Hello everyone I need your help. My little brother who is 22 years old was just diagnosed with squamous cell carcinoma, moderately poorly differentiated. I am really scared. He had a sore on his left tongue for about 2 months and we thought it was just a kinker sore and now we got the results back and we are scared. Qe are taking him to a specialist tomorrow. Can you give me insight? Is his survival rate only 5 years? I keep reading that it is 5 years and im so scared.
Thank you for your help,
AK
Hi Ak123.
First, my condolences about your brother. It's always a shock to learn that someone very close, as with the case of your brother, has a life-threatening disease!
But please take a deep breath now. A huge part of the determination of his life expectancy depends on what Stage is cancer is when he was first diagnosed.
The "expected" 5-year survival rate is different for each stage. I'm stage IVc, which has the least "expected" number of years before the disease overwhelms the bodies ability to cope.
No one can give you a definitive answer to "Is his survival rate only 5 years?" because the reality of this prognosis business is that it is entirely a matter of Statistics. Within any staging group, some will have a shorter life, and some will have a much longer survival.
And don't forget, we are all born with an incurable and 100% fatal condition called "life." And that means that NO ONE gets out of here (this existence) alive. Even if his prognosis is for 5 years, he ( or you or me) could easily die from some other event, like getting hit by a car as you walk across the street.
In my case, none of us are expected to last 5 years. But I expect that some do. I'm 3-1/2 years into this prognosis, but I fully expect to outlive that number by a considerable amount of time. I might be wrong. C'est La Vie.
Wait for the detailed prognosis from his Medical Oncologist before hitting the panic button, You may well have caught it in time and he might well actually get cured!
Try to maintain a calm mind and go into each meeting with the medical team with an open mind and avoid thinking about what you are going to hear. It could be good news, and obsessing about it now will have only brought unnecessarily grief and anguish to your mind.
And should the news be less than good, you will have denied yourself the normally peaceful mind by dwelling on the future. No one can say what the future will bring, facing it with a calm mind with no expectations will lower your stress and Cancer feeds on stress.
And sugar.
I hope this helps,
Bart
Welcome to OCF! I'm very sorry to hear about your brother. He is very young to get OC, but it is not unheard of. We have a number of young members on the OCF forum. Oral cancer can be very aggressive, and it does claim a lot of lives each year. Often this is because of late stage diagnosis. I was diagnosed in 2005 with SCC stage 1 on my tongue and I know many long term survivors. Don't dwell on the statistics, as each person is different.
OC is treated by surgery and/or radiation with or without chemotherapy. The OCF website and this forum are excellent resources to educate yourself about oral cancer. If possible, try to take him to a Comprehensive Cancer Center that treats a lot of oral cancer patient. There is a list of these hospitals on the OCF website somewhere and I'm sure if you read some of the posts on the forum there will be a link to this list. Who you are treated by and where are critical!
Make a list of questions to ask the doctor you are taking him to tomorrow. Get copies of his biopsy report and other medical records. The OCF forum is made up up of OC survivors and caregivers and we are here to help you and your family 24x7. Please use us as a resource and don't be afraid to ask questions. Wishing your brother the best!
Welcome to OCF!
Please do not misinterpret the 5 year survival rate as meaning he will only be here for 5 more years. That simply means that at 5 years post treatment the survival rate is only about 55-60% of everyone who was treated will still be alive. That shows you oral cancer is nothing to play around with! Ive seen patients with terminal diagnosis survive for several years while others who seemed to have a much less invasive case of OC pass away. There is no rhyme or reason, (to be blunt and repeat what one of our long time members would say)... you will either make it or you wont.
I suggest going to a major comprehensive cancer center (CCC) and seeking the best medical care you can for your brother. Below is a list of CCC's. They are the countries top hospitals to treat cancer and where your brother should get the most up to date treatment available. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get a second opinion.
CCC List US News Best Hospitals List You have found a great place to get info and support! We will help both you and your brother get thru this so stick with us.
Hello AK, I'm really sad that you have to be here, your Brother is so young.
However this disease doesn't take any notice of age. I do know that on initial diagnosis one does get sent into a whirlwind of panic and rambling thoughts.
I reiterate what all the above posters have said. Take a deep breath and breathe .
Can not stress enough the importance of being seen at a Comprehensive Cancer Center with the whole team approach. Look through the list Christine has posted and get your Brother to one of them. This disease needs to be treated correctly from the get go to give your brother the very best chance of Cure. Yes, cure. This disease is curable. Hang onto that thought and take it one day at a time.
My very best wishes to you, your Brother and your family.
Tammy
Thank you Bart! We will know the stage tomorrow. I am very sorry for your cancer too. I will pray that you live 100 more years. Our oral doctor is sending us to a Otolaryngology is that the same as an Oncologist? and you are so right no one is guaranteed life.
Susan-
If you dont mind me asking did you do surgery or radiation? If you dont want to answer please dont worry at all.
We scheduled him with an appointment with an Otolaryngology doctor. I dont think he is at a a Comprehensive Cancer Center. Is that a bad idea? we just want to get to an appointment first thing in the morning.
What kind of questions should I ask? I am so confused.
I did get a copy of the bioposy report and it says Squamous cell carcinoma, moderately poorly differentiated (tumor is present in all margings. P16 immunoperoxisade stain is negative.)
Christine we are going to a Otolaryngology doctor named Jan Akervall tomorrow he is at Rontal-Akervall Clinic .
is that a bad idea?
Sorry but I do not know about individual doctors (except a top few) or small treatment facilities. Check the lists I posted and see if they are on there for being one of the top CCC's or hospitals.
The best advice I can give you is to go to a CCC. If that is not an option then find the best medical care you can. A second opinion is also a good idea. Just remember... surgeons cut, radiation oncologists always recommend radiation, same goes for chemo oncologists. This is why going to a place where they use a team based approach, all the doctors will get together and discuss each case individually. They will all be on the same page when a treatment plan is drawn up.
Cancer, especially oral cancer is not anything to play around with. Where a patient gets treated can make a major difference! Im sorry, I can not advise you which facility is the best one to take your brother to. I can only give you the list of our country's top places, its up to your brother and family to decide what works best for him. I know its not easy and everyone doesnt know which way to turn when first being diagnosed. This is why a second or even third opinion is so important.
Good luck!!!
This should help...
Main OCF pages I suggest reading and educating yourself both here on the forum and on the main OCF pages. There are all kinds of important things there as well.
Hi AK,
I don't mind answering any questions - just ask. You can see dates and treatment in my signature line. I've had 4 surgeries - first in June 2005, and then 3 more in 2010-2011 due to a recurrence.
I was diagnosed as stage 1 in 2005 and recommended treatment was surgery alone. I found out a few months later that my biopsy was misread and there was cancer at the margins. This doesn't happen often fortunately. I sought three opinions on what to do, and the final recommendation was "watchful waiting" or radiation. I opted for radiation. My doctor, the best ENT in our area, is still my primary doctor, however, I found out the hard way that where you are treated is also very important.
In 2010 when I had a recurrence, I also went for three opinions but this time I included Johns Hopkins in Baltimore - best decision I made. JH is one of the best head and neck cancer hospitals in the country. I had my last two surgeries there.
Most of us are treated by otolaryngologist or Ear, Nose & Throat (ENT) doctor. ENT's treat a number of conditions including oral cancer. One question to ask the doctor you are seeing how many oral cancer patients he/she has treated. You want someone with lots of experience.
Ask the doctor to explain the biopsy results. He should recommend additional treatment since the tumor is present at the margins. Poorly differentiated isn't good (sorry to say) - well differentiated is better. P16 I believe is related to HPV status - now a leading cause of oral cancer (but rarely positive in SCC of the tongue).
He should recommend additional tests - CT, PET and/or MRI to determine if the cancer has spread. SCC usually will spread to the lymph nodes in the neck first. Look into info on neck dissection (removal of lymph nodes).
As we've said, there is a lot of great information on the OCF website and forum. Use the search functions. You can find more information on my treatment (or other member) by clicking on my name to see my posts.
Hi AK - So glad you found this great place to be. Everyone here helped my son and me when he was at the same place. My son had a sore under his tongue, left side for about 6 months before he went to a doctor who referred him to an oral surgeon and then a Maxillofacial surgeon. It was a Stage 2 and he was treated with surgery and radiation and is doing fine now 7 years later. It helps to have someone else go with you when you see the doctors so that they can help you and your brother remember what was said or take notes. It does help to read up on everything on the main pages, especially where it says "Diagnosis" and can help you formulate questions for the doctors or for anyone here. Hope everything goes well with your appointment today. Check back often and let us know how your brother is doing.
HI there... check your PM I did respond to your message... HUGS.
[quote=ak123]Thank you Bart! We will know the stage tomorrow. I am very sorry for your cancer too. I will pray that you live 100 more years. Our oral doctor is sending us to a Otolaryngology is that the same as an Oncologist? and you are so right no one is guaranteed life. [/quote]
Hi AK,
Thank you for the kind wishes yourself.
But if I may do so without appearing to to be an ungrateful wretch, I'd very much like it if you could dial back on those extra years.
Living to be 175 years... (shudder,) Let's just say that such is not one of my most fervent desires. The very idea scares me more that any diagnosis I could ever face. (shudder...)
But you have my very best wishes for your brother, and you, of course.
It's a Noble and rewarding and challenging job you have taken on, being your brother's advocate and I applaud you for stepping up like that!
Hello,
I am familiar with Dr. Akervall. I sent you a Private Message. I hope to hear from you soon.
Hi AK - welcome to the family. You will find a lot of caring, knowledgeable people here who can help you and your brother through this journey. If it turns out to be oral cancer, it would probably be a good idea if you could get brother to join the forum himself. Having a great caregiver is a real blessing, but there's lots he needs to learn himself about this disease and it's treatment. If he joins he will think of and ask more questions than if you do all the reading, thinking, communicating for him.
Good luck with the diagnosis. If it turns out to be oral cancer, you know we are here to help you.
take care
Tony
[quote=Susan2992]Hi AK,
I don't mind answering any questions - just ask. You can see dates and treatment in my signature line. I've had 4 surgeries - first in June 2005, and then 3 more in 2010-2011 due to a recurrence.
I was diagnosed as stage 1 in 2005 and recommended treatment was surgery alone. I found out a few months later that my biopsy was misread and there was cancer at the margins. This doesn't happen often fortunately. I sought three opinions on what to do, and the final recommendation was "watchful waiting" or radiation. I opted for radiation. My doctor, the best ENT in our area, is still my primary doctor, however, I found out the hard way that where you are treated is also very important.
In 2010 when I had a recurrence, I also went for three opinions but this time I included Johns Hopkins in Baltimore - best decision I made. JH is one of the best head and neck cancer hospitals in the country. I had my last two surgeries there.
Most of us are treated by otolaryngologist or Ear, Nose & Throat (ENT) doctor. ENT's treat a number of conditions including oral cancer. One question to ask the doctor you are seeing how many oral cancer patients he/she has treated. You want someone with lots of experience.
Ask the doctor to explain the biopsy results. He should recommend additional treatment since the tumor is present at the margins. Poorly differentiated isn't good (sorry to say) - well differentiated is better. P16 I believe is related to HPV status - now a leading cause of oral cancer (but rarely positive in SCC of the tongue).
He should recommend additional tests - CT, PET and/or MRI to determine if the cancer has spread. SCC usually will spread to the lymph nodes in the neck first. Look into info on neck dissection (removal of lymph nodes).
As we've said, there is a lot of great information on the OCF website and forum. Use the search functions. You can find more information on my treatment (or other member) by clicking on my name to see my posts. [/quote]
Why isnt Poorly differentiated good??
Poorly differentiated means that it's aggressive. It's the least like your own cells, they are reproducing so quickly that they don't mature properly and are unpredictable in nature. The plus side is because they are so poorly developed they're easier to kill, but they're also harder to catch. Hope this helps.. Hugs
[quote=Anne-Marie]Hi AK - So glad you found this great place to be. Everyone here helped my son and me when he was at the same place. My son had a sore under his tongue, left side for about 6 months before he went to a doctor who referred him to an oral surgeon and then a Maxillofacial surgeon. It was a Stage 2 and he was treated with surgery and radiation and is doing fine now 7 years later. It helps to have someone else go with you when you see the doctors so that they can help you and your brother remember what was said or take notes. It does help to read up on everything on the main pages, especially where it says "Diagnosis" and can help you formulate questions for the doctors or for anyone here. Hope everything goes well with your appointment today. Check back often and let us know how your brother is doing. [/quote]
i am also so glad to find this great place! I am so glad to hear that your son is doing fine. My brother has it on his right side of the tongue. I see that your son removed 1/6 of his tongue. Did he have to do speech therapy after that? Did he have to use the Maxiofacial surgeon? Also, my brother is only 22 so he is dissapointed that he wont be able to drink alcohol again. Does your son ever drink now? if these questions are too personal please do not feel like you have to answer them.
AK - My son did not have any speech therapy after the surgery. He did have a lisp and there were times when I had to ask him to repeat things but it was only for a very short time. He was frustrated and depressed because recovery was a s l o w process and he would be very impatient with me when I had to ask him to repeat stuff. I told him I had a hearing problem (I didn't) so he had to be patient with me. Paul did not have to have anything done to his face or neck that would be noticeable except for the surgery scar but it was cleverly hidden in a fold of his neck so it is not at all visible.
Re alcohol use - I think it depends on the individual, the medical history, the reason for the surgery, and what the doctor recommends for your brother. My son does drink occasionally and I worry about that because I don't know how "occasional" it is. I have sent him a lot of helpful information on alcohol and it's relationship to oral cancer from the main pages of OCF. (I feel that as an adult, he has the responsibility to be in charge of his own health). You can also use the search box at the top right of this page to find what others have said about it. Don't worry about asking anything personal. If you are concerned, you can always ask it in a PM (personal message by clicking on the name at the left of this box) but asking here will get you more replies and suggestions.
I know I've said this before but I'll say it again. To me the risk of drinking is just not worth it.
Hugs. I answered your PM my dear.
Hi AK,
Generally I side with a few drinks now and then do no harm for the over the hill gang who are HPV+ with no history of smoking or drinking excess.
Knowing what I know now, if I was 22 and had oral cancer I would be wary of any alcohol. Being so young it is hard to know if his body is predisposed to alcohol being a trigger for cancer. If the cancer is HPV+ it might be a bit easier to think alcohol is not involved but he has a long life ahead of him so why not be on safe side.
In my case, at 58, having zero abuse of smoke or drink, being HPV+, and drink in moderation for a long time, I am at ease having a few beers here and there. Given HPV+
SCC is viruse based, I believe my profile does not fit one that has oral cancer linked to moderate alcohol use.
Hey everyone,
My brother just had surgery. His CT scan results were negative for lymph nodes. We are going to wait on the pathology report to know mlre about the situation.
Want to know the craziest thing about all of this I just asked the doctor was it from smoking? Alcohol? And he said no your brother was just picked randomly. He is negative for HPV too. So literally he was just picked randomly! Was anyone here picked randomly?
Great news on the nodes being clear. Means a lower stage and less harsh treatment plan.
[quote]Was anyone here picked randomly?[/quote]Basically, he is saying he does not know where it came from or how he got it.
Other than those who had a history of much drinking and smoking and have SCC HPV-, much of it is "random". This just means they do not know all the factors that trigger cancers.
Even HPV+ is the known source of this cancer but why do only a very small percentage that get it do not pass it without it turning into cancer?
There are many members who are HPV- and have never used tobacco but have ended up with oral cancer. Sorry your brother is part of our group who have no known cause.
Yup, it happens. My mom was 74 at diagnosis so it isn't quite the same situation but she never smoked ever. She drank socially no more than a glass of wine at dinner. It happens.
Good news on the nodes!
I have a question for everyone. My brother did his surgery to remove some
Of his tongue and it was orignanally scheduled to be an outpatient surgery but he was in too much pain. They kept him overnight. Did anyone do outpatient or in patient? It's crazy to me that they wojld send him home after removing some of his tongue and expect him to take norco/Tylenol?
No two surgeries are the same ak. I am sure it would depend on how much tissue they had to remove and where it was. They can send you home with stuff much stronger than Tylenol.
AK,
I'm glad your brother is done with his surgery and his CT scan was negative for the lymph nodes - that is good news!
In answer to some of your questions, I and most of the people I have personally met with oral cancer (over 30 since 2005) fall into the non-smoking, no risk factor group - the "random" unlucky group! If you read the stats on the OCF website, this group is only 7%. Smoking, alcohol and HPV are the leading causes.
[quote] A small percentage of people (under 7 %) do get oral cancers from no currently identified cause. It is currently believed that these are likely related to some genetic predisposition.[/quote]
Its been suggested to me that it could be from some irritant in my mouth (a rough tooth), but for me that is not the case. Genetics (again, no family history) or another, unknown virus were also given as a possible reason. I've researched this topic a number of times, and the best of the best haven't come up with a reason yet for those with no risk factors who develop oral cancer - other than unlucky!
Since I've had a recurrence (same location), "why" I got it twice (plus dysplasia once) does give me concern. Since some of my surgeries were at Johns Hopkins, I have participated in some of their studies trying to find a reason, so I hope some day an answer is found.
I've had four surgeries - two were done as outpatient and two I spent one night in the hospital. The first surgery I was sent home with liquid prescription pain medicine which took me over 20 minutes to swallow since my tongue was very swollen and painful. I felt that I should have been kept overnight because of the pain and the swelling I had, so when I needed surgery #2 and #3 I insisted to be kept overnight. The last surgery I had they were not sure how much tissue would need to be removed. I was prepared to stay overnight, but fortunately they didn't need to remove that much and I went home.
My brother was negative for spreading to the lymph nodes in his CT scan and he was negative in the pathology report. We just met with the doctor and the doctor said "we removed the tumor bht it is going deep so myself and a couple doctors say we should do a neck dissection to remove about 28 lymp nodes and 4 weeks later we will do implant radiation."
Doctor wanted this Monday but my brother wanted a break so he will do two weeks from now July 14. (Doctor said actually that is a good idea for you to get a break) and then a month from now he will do radiation. What do you all think of this friends? He just wants to take an aggressive approach do it doesn't recour.
I personally don't think that a two-week break will hurt his chances a bit.
I remind you that this is only my PERSONAL opinion. Not a medical opinion.
Sounds like the doctors are being very positive about the outcome if they are suggesting a two week break, but it might be worth asking the doctors Why? here so they could reinforce their medical reasons for the break. Everyone is different of course even though we may see similarities between diagnoses and patient experiences. My son had 48 lymph nodes removed (all negative) at the same time as the surgery to remove the lump under his tongue, but his was a stage 2.
Ultimately rather than having surgery twice they should have removed the nodes at the same time. But that's a moot point. The neck dissection isn't too bad of a surgery but he will need physio after - depending on how the dr cuts he'll Likey have a wonky shoulder and arm for a bit. Physio will help. As for pain and what not depending on how much of his tongue they removed going home is a possibility. I was in for 10 days but I also had reconstructive surgery.
Radioactive seeds.... I suppose they could use that but the standard is actual beam radiation for anywhere between 6-7 weeks with possible chemo. I would definitely get a second opinion.
hugs
For head and neck cancer, they usually like to keep the "total treatment package" less than 100 days for better tumor control, survival. After the neck dissection, radiation is usually done within 4-6 weeks, depending on healing. Sounds like brachytherapy, which is an option for radiation or permament seeds, which I'm not as familiar with. There is low dose rate, LDR, and Hgh Dose Rate, HDR, Brachytherapy can be given solely or as a boost to EBRT, Extetnal Beam Radiation also, within 1-2 weeks. I had a newer form of Brachtherapy called High Dose Rate Intraoperative Radiation Therapy, HD-IORT, during resection of tumor, followed by IMRT after healing, and a 2nd one this year with Proton Therapy.
Good luck.
I am so confused. My brother did the surgery with an Otolaryngology doctor on June 24, 2014. Our doctor works out of Beaumont Royal Oak and thats where my brother had his surgery. They do have a cancer center but I dont think its a comprehensive cancer center. (I tried to open ChristineBs list of comprehensive cancer centers and it wasnt working) I opened the hospital one just fine and U of M-Ann Arbor MI was number 24.
Anywho...our doctor who performed the surgery recommended that my brother does a neck dissection to remove lymph nodes and then to do 1 week of brachytherapy (which is radiation implants).
Today- we went to a 2nd opinion at Karmanos Cancer Center. The doctor there says that both Karmanos and U of M-Ann Arbor are the comprehensive Cancer Centers in MI.
This was his opinion...
I think because of the close margins, the lympathic problem, the vascular invasion I would recommend additional therapy which would be radiation therapy alone. I would recommend IMRT opposed to an implant radiation (brachytherapy) I would not recommend an elective neck dissection. The question of verbatix in addition to radiation therapy is an open one. They might recommend it down to cancer centers because of your age group. I personally think its probably overkill.
If he were to do a neck dissection I think 1 chance out of 5 that we will find cancer cells�
Can someone please help me? I am so lost.
This doctor is recommending no neck dissection and no brachytherapy but IMRT most likely to include both sides of the neck and of course the tongue. I assume the cancer cells did not test positive for HPV. IMRT is pretty standard for our cancer.
[quote=davidcpa]This doctor is recommending no neck dissection and no brachytherapy but IMRT most likely to include both sides of the neck and of course the tongue. I assume the cancer cells did not test positive for HPV. IMRT is pretty standard for our cancer. [/quote]
Yes David he is negative for HPV. Do you think IMRT is good? Did you do
It?
ak, check the signatures of other members. You will find most members (David included), have done the IMRT.
IMRT is used much more often with our cancer than brachytherapy. Judging by your comments I'm not sure he is being seen at a CCC? I would want to make sure he was at this point.
[quote=ChristineB]ak, check the signatures of other members. You will find most members (David included), have done the IMRT. [/quote]
Opps- Sorry Christine! I forgot about that. Christine- How do I get the CCC list to open? It wasnt working last time?
Brachytherapy (internal radiation) has been around for 100 years. It fell out of sync with the now more favorable and widely used IMRT, which is also tissue/organ sparing with its dose painting techniques, and doesn't require as much specialized equipment, training and a leaded shielded room. It is still used at select locations, and as primary treatment, and as a boost dose with IMRT to increase radiation dosage delivery.
Sorry the link wasnt working. Try this....
CCC List
[quote=ChristineB]Sorry the link wasnt working. Try this....
CCC List [/quote]
Thanks so much Christine that one worked! Yes, the doctor that I went to today is at a Comprehensive Cancer Center ( Barbara Ann Karmanos Cancer Institute). There are only 2 comprehensive cancer centers in MI. Do you think a cancer center is much better?
Recent studies confirm that those treated at a CCC have better outcomes and survival rates.
This may well be due to the fact that they have more expertise and experience in treating head and neck cancers. CCC's treat thousands of these cancers every year. Your local hospital may only treat a dozen or so.
Personally I would head straight for a CCC. This cancer is aggressive and it warrants treating correctly/according to the NCI guidelines the first time. Recurrences are always more difficult to treat and you do not want to go there.
Personally I have not heard of anyone else being treated with Brachytherapy for this and it raises a red flag for me.
Seek out a second opinion at a CCC, maybe from 2 CCC's. I wish your brother all the best.
Tammy
@Tammy- I believe EzJim did brachytherapy but he never called it that. He always said seed implants. Brachytherapy is not the usual standard of care in treating OC the first time. Its normally only seen with patients who have had recurrences.
[quote=ChristineB]@Tammy- I believe EzJim did brachytherapy but he never called it that. He always said seed implants. Brachytherapy is not the usual standard of care in treating OC the first time. Its normally only seen with patients who have had recurrences. [/quote]
Yes Christine they do call it seed Implants. Does ezjim think it was a good option? I am worried if we make the wrong choice.
Hon, EzJIM sadly passed away in may of this year. I send you a pm reply to your PM. In short my reply is much the same as everyone else here. IMRT is the standard. Brachytherapy is usually used in recurrences. Tell your brother to get treated at the CCC (karmanos) and do the radiation, I said much the same thing in my PM but with more explanation of why. Hugs and take care
He's no longer "with" us.
As long as I've been on this site I only remember 2 maybe 3 having this recommended and as Christine said only on recurrences. I don't even remember the seeds being mentioned by a CCC for a first time Tx ever.
Seeds may be referring to as used in prostrate cancer, and are seed like and or the beads that are used in a hollow tube for brachytherapy, interstitial believe. As mentioned, we probably seen more of this in the recurrence setting, but Brachytherapy is in the NCCN Guidelines for definitive radiation treatment for oral cavity cancer, although IMRT is preferred.
Here is more info for resource purposes.
http://en.m.wikipedia.org/wiki/Brachytherapy
We had some treated with brachytherapy as IMRT was replacing XMRT 10+ years ago for tonsil cancer or oral cavity as Paul mentioned. Seeds have been used mostly for lung and liver mets.
Hi everyone,
I am so lost and confused. I know I typed up some of this already but now I have 3 opinions.
My brother did a tongue dissection on June 24, 2014 at Beaumont Royal Oak (this is not a comprehsive cancer center). After the surgery the doctor realized that the tumor was deeper than expected. He was diagnosed as stage 1 cancer but the depth is 0.7 mm. The doctor recommended that my brother does a neck dissection to remove lymph nodes and then to do 1 week of brachytherapy (which is radiation implants).
We went to Dr. John Jacobs (Northwestern University School of Medicine, Chicago, Illinois
M.D., 1975) afterwards for a second opinion. He is out of Karmanos Cancer Center in MI. He is at a CCC. This was his opinion... I think because of the close margins, the lympathic problem, the vascular invasion I would recommend additional therapy which would be radiation therapy alone. I would recommend IMRT opposed to an implant radiation (brachytherapy) I would not recommend an elective neck dissection. The question of erbitux in addition to radiation therapy is an open one. They might recommend it down to cancer centers because of your age group. I personally think its probably overkill.
If he were to do a neck dissection I think 1 chance out of 5 that we will find cancer cells�
Today we went for a third opinion (also at a CCC- U of M Ann Arbor, MI) The doctors name is Dr. Matthew Spector (Loyola University of Chicago - Stritch School of Medicine, 2007) His opinion is:
The treatment we would do after that is 2 choices.
1. my recommendation is re-incision (tongue surgery again) with neck dissection, re-construction of your tongue (rebuild it) and then radiation but maybe not chemo.
2. chemo radiation now. Radiation and chemo. External beam IMRT
radiation.
�Erbitux- type of chemotherapy (never been studied in your type of cancer and shown to be affective) new type people are using. I would not give you erbitux because such a high risk of coming back. The only drug that has been shown in randomized trials to help this type of cancer is high does Cisplatin.
Doctor: radiation isn�t as affective- the reason we use surgery followed by radiation is because surgery- because radiation is not really as affective when there is a lot of disease left so radiation is really good at cleaning up little few cells but if we have a postive margin we consider that gross disease left on the tongue.
What should I do now?? I need help?? Which opinion should I listen to?
Im very sorry you are having a hard time with this! I can certainly understand how confusing this can be. None of us here are medically trained professionals. We arent qualified to make these types of decisions, only you with your family can decide what is the best option. Selecting a treatment plan is never an easy choice. Im sorry I wasnt able to help sway you on this.
Best wishes.
Cancer in the tongue has proven to be quite aggressive so if I were the patient and knowing what I have seen on this site I probably would lean towards additional surgery and then IMRT but as Christine points out ONLY your doctors are trained and in the best position to make their recommendations. My leaning towards the surgery would depend upon how much cancer is left because if I were told say "not much" then I would lean towards just the IMRT. I definatey don't agree with the above comment that radiation isn't as effective. In some initial treatments of this cancer radiation is the only recommended treatment.
After reading all of the above, and because tongue cancers tend to be aggressive, I would lean towards surgery and then IMRT radiation. I have no medical background but here are some questions I would be asking the doctors:
Re Opinion #1:
Since this is not a CCC I would have more confidence in the opinion of an ENT from a CCC.
The questions I would have the following questions to ask of the #2 and #3 doctors:
1. Is a tongue dissection another word for a type of Biopsy where only a portion of the lump is removed for analysis?
(see OCF link to detailed info on Biopsy types here:
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php2. First opinion was Stage 1 which seems to indicate very early stage.
How does the staging as well as the depth of 0.7mm figure into to the type of treatment recommended?
3. Is it recommended that surgery be to remove existing or remaining tissue from the tongue, the lymph nodes or both? Why?
Re the 2nd opinion Dr. Jacobs (Northwestern Univ) recommends radiation therapy alone (IMRT).
4. Why only radiation? Does he think the earlier neck dissection being Stage 1 removed all visible cancer cells?
Re the 3rd opinion Dr. Spector (Univ of Ann Arbor) who recommends
tongue surgery with neck dissection, reconstruction of tongue and radiation.
5. Is the re-incision/surgery to remove any possible remaining cancer cells?
6. Is the neck dissection to remove lymph nodes?
7. Why is rebuilding the tongue necessary? Is the staging still Stage 1?
8. When Dr. Spector said �radiation is not really as effective � did he mean Radiation alone? My understanding is that Surgery takes care of everything they see during surgery and radiation following surgery takes care of whatever not seen during surgery.
Maybe you and your brother could make a list of all the questions you both have, type them up with copies for when you next see the doctor. Or you could fax them to the doctors to be able to prepare their answers for you. That's what I have done and have had good results from the doctors I have dealt with. Making a list can lessen any feelings of confusion and helps to "release them from your brain".
Hi AK,
As you found out when you go for 2nd or 3rd opinions, you do get multiple options. From my experience when doing this, no two doctors agreed on what was the best option for me - it was ultimately my decision. In my case I based it on the research I did, the questions and answers I received from each doctor, and my gut feeling.
As many have pointed out, this can be an aggressive cancer, and you should seek treatment that is aggressive. Believe me you don't want to face a recurrence in a few years. There are no guarantees that whatever decision you make is the right one and unfortunately there is no "undo" button.
Gather your family around and make a list of pros and cons for each option. Ultimately it is your brother's decision as to what course of treatment he wants. The OCF forum members can share our experiences and what we've learned, but each person's situation is different and will react differently to treatment. Basically you need to select an option now and move forward. If your family believes in prayers, then pray for guidance and for a good outcome.
We will be here to help you, your family and your brother through this. Again, wishing you the best! It is not an easy decision to make.
[quote=davidcpa]Cancer in the tongue has proven to be quite aggressive so if I were the patient and knowing what I have seen on this site I probably would lean towards additional surgery and then IMRT but as Christine points out ONLY your doctors are trained and in the best position to make their recommendations. My leaning towards the surgery would depend upon how much cancer is left because if I were told say "not much" then I would lean towards just the IMRT. I definatey don't agree with the above comment that radiation isn't as effective. In some initial treatments of this cancer radiation is the only recommended treatment. [/quote]
I know that doctors are the only ones that are in the best position to make recommendations. However, this forum has helped me understand all of this more than our first doctor and I love all of your opinions. They dont know how much would be left they just said he has a positive margin. The distance between the invasive carcinoma to the nearest margin was only 0.5 mm and thats what they are worried about. The second doctor did say that he believes the radiation will kill all of the cells. However, both doctors said they could not make a final final opinion until they received the slides from Beaumont Hospital.
Unfortunately there will be no guarantee that they will kill all the existing cancer OR it won't come back regardless of which approach you go with and that's just one of the reasons dealing with this cancer is so unpredictable. I wish I had that crystal ball.
One question you should ask is: how much raditation can I receive if I don't have surgery, and how much can I receive if I have surgery. The doses can be very different and may help you make your decision. I hope this helps.
[quote=Anne-Marie]After reading all of the above, and because tongue cancers tend to be aggressive, I would lean towards surgery and then IMRT radiation. I have no medical background but here are some questions I would be asking the doctors:
Re Opinion #1:
Since this is not a CCC I would have more confidence in the opinion of an ENT from a CCC.
The questions I would have the following questions to ask of the #2 and #3 doctors:
1. Is a tongue dissection another word for a type of Biopsy where only a portion of the lump is removed for analysis?
(see OCF link to detailed info on Biopsy types here:
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php2. First opinion was Stage 1 which seems to indicate very early stage.
How does the staging as well as the depth of 0.7mm figure into to the type of treatment recommended?
3. Is it recommended that surgery be to remove existing or remaining tissue from the tongue, the lymph nodes or both? Why?
Re the 2nd opinion Dr. Jacobs (Northwestern Univ) recommends radiation therapy alone (IMRT).
4. Why only radiation? Does he think the earlier neck dissection being Stage 1 removed all visible cancer cells?
Re the 3rd opinion Dr. Spector (Univ of Ann Arbor) who recommends
tongue surgery with neck dissection, reconstruction of tongue and radiation.
5. Is the re-incision/surgery to remove any possible remaining cancer cells?
6. Is the neck dissection to remove lymph nodes?
7. Why is rebuilding the tongue necessary? Is the staging still Stage 1?
8. When Dr. Spector said �radiation is not really as effective � did he mean Radiation alone? My understanding is that Surgery takes care of everything they see during surgery and radiation following surgery takes care of whatever not seen during surgery.
Maybe you and your brother could make a list of all the questions you both have, type them up with copies for when you next see the doctor. Or you could fax them to the doctors to be able to prepare their answers for you. That's what I have done and have had good results from the doctors I have dealt with. Making a list can lessen any feelings of confusion and helps to "release them from your brain".
[/quote]
Hi Anne-Marie:
I am going to answer all of these questions as best as I can. (we will be meeting with the Karmanos doctor tomorrow morning along with his tumor board).
1. The tongue dissection they are referring to is doing another surgery of removing the tongue.
2. The depth changed things a bit because even though he is a stage 1 all doctors agreed that the depth worried them and thats why they all recommended more treatment.
3. The tissue on the tongue is clear but the third doctor recommended removing more clean tissue because the margins were close. Also, he recommended the neck dissection to remove lymph nodes. the reason why he wanted to remove lymph nodes is because he wants to properly stage him.
4. He recommended only radiation because he thinks that only 1 out of 5 chances would a lymph node be involved. My brother has not done a neck dissection yet.
5. Yes.
6. Yes.
7. He wants to remove a lot so he thinks rebuilding will be necessary. I will ask the 2nd part of the question to the doctor.
8. Yes, thats what he meant and thats why im confused because one doctor told me that radiation will kill remaining cells but Dr. Spektor says it will not be as affective.
I love all of your questions and tomorrow morning I am going to use them all! thank you.
Hope everything goes well with your brother's appointment today. Since my son's surgery experience was removal of only one sixth of his tongue, perhaps someone else here with more experience than my son or I have, can comment on your -
#1 question re: <<. . . doing another surgery of removing the tongue>>
I think I would be asking "Does this mean the whole tongue depending on what they see during surgery or is there a chance that only a portion of the tongue can be removed ?" And if this is the case, I would ask what is involved in the rebuilding procedure and recovery.
Stay close and let us know what happens today.
Hey everyone,
On Wednesday we went back to karmanos cancer center for a follow up which was Dr. Jacobs (2nd opinion). The tumor board walked In and said...
You had a relatively thick cancer the cancer has some signs of aggression in large number of patients not particularly you as an individual and it's going to the lymphatics it's crawling around the nerves and it's into the vessels. Recommendation group for re operation on the tongue ..Remove from forearm and neck dissection. After that operation we will know better about your cancer and you may need to do additional therapy which is radiation therapy or chemo radiaton.
The radiaton doctor was basically saying he wants to save the radiation because if it was to ever reoccur they want to keep it in their back pocket. If you don't want the surgery we recommend radiation and chemo to sterilize the area and also this would help to kill any spots that have potential to form cancer in the future but that's not guaranteed.
If the radiaton chemo does not work. When you operate then is the operation the same the answer is probably but I don't know for sure. The complication rate is going to sky rocket because of the prior radiatikn and chemo. There is going to be some problem with speech if I have to operate after chemo radiaton and it's not a free shot.
Your very young to be here so we want to keep many options open as possible.
Sounds like your brother's cancer is very aggressive. The issue I see (please correct me if Im wrong) is your brother already had surgery to supposedly take the cancer out. But its only a short time later and the cancer is still there. Was this meeting with the original team of doctors? I would not feel comfortable going back to them since the cancer is still there and growing even after surgery to remove it.
To me what the doctors are advising to do surgery and get as much out as they can and after that they will see where he stands. If they can avoid rads they want to because of his young age. That is understandable due to all the damage radiation does and the lousy after effects that will last a lifetime.
In my opinion (without a medical background) they need to hit it hard with everything to get rid of it all this time. Surgery first then radiation with chemo to make sure they got every single cell. Yes there is always collateral damage with radiation but it will clean up individual cells that can so easily get missed. This is especially important due to how the doctor explained the location of the cancer. It sounds to me like its growing and beginning to spread at least thats their opinion after reviewing all the tests and charts. Its time to decide which route to take and what team to go with and get this taken care of before the cancer grows even more.
Wishing your brother, you and your entire family all the very best with everything!
.In reading through the many posts, it seems tongue surgery was done, and due to the close margins, and lymphovascular invasion, LVI, a neck dissection was done with no further cancer found. Different consultations resulted in a number of further treatment options because of the negative prognostic factors found after tongue surgery, and is where brachytherapy came in, which is good for close or positive margins, PNI, perineural Invasion, and LVI.
At this same point, I've had similar findings, but with positive margins, and lymphovadcular invasion, LVI, and one with both LVI and PNI.
My treatment (s) were: 1. Neck Dissection to remove remaining cancer, 2. High-Dose Intraoperative Radiation Therapy, HD-IORT during surgery directly on the tumor bed (similar to brachtherapy) and 3. A pec flap to do additional radiation, and 4. 4-6 weeks after healing, additional IMRT or Proton Therapy with chemo, (Chemoradiation).
As you can see, my doctors incorporated everything or smilarly suggested for your brother, to deal with my persistent cancer. My scan was clear after my treatment in May.
As far as PNI and LVI, it's not cut and dry as far as its definate invasive spreading, but my doctors took no chances. They said without further Proton treatment (external beam radiation), Chemo, I stood a 70% chance of my cancer returning.
Each person, cancer, doctor, treatment, and outcome is different.
I hope this helps.
[quote=ChristineB]Sounds like your brother's cancer is very aggressive. The issue I see (please correct me if Im wrong) is your brother already had surgery to supposedly take the cancer out. But its only a short time later and the cancer is still there. Was this meeting with the original team of doctors? I would not feel comfortable going back to them since the cancer is still there and growing even after surgery to remove it.
To me what the doctors are advising to do surgery and get as much out as they can and after that they will see where he stands. If they can avoid rads they want to because of his young age. That is understandable due to all the damage radiation does and the lousy after effects that will last a lifetime.
In my opinion (without a medical background) they need to hit it hard with everything to get rid of it all this time. Surgery first then radiation with chemo to make sure they got every single cell. Yes there is always collateral damage with radiation but it will clean up individual cells that can so easily get missed. This is especially important due to how the doctor explained the location of the cancer. It sounds to me like its growing and beginning to spread at least thats their opinion after reviewing all the tests and charts. Its time to decide which route to take and what team to go with and get this taken care of before the cancer grows even more.
Wishing your brother, you and your entire family all the very best with everything![/quote]
Hi Christine,
Yes you are very correct the issue is that he already had surgery to remove the cancer. Afterwards we meet with a second opinion and third opinion (the second and third opinion are from comprehenesive cancer centers)... and they both agreed that they want to re-disect the tongue and do the neck dissection.
We met with our original surgeon on Wednesday for a follow up who wasnt at a comprehesive cancer center (wish I listened to you all in the beginning :() and he said that he would not re-dissect because he wants to save his tongue function and they he would still recommend brachtherapy. I was then questioning him like why would you recommend brachytherapy if its not a reoccurence? and so on? and he never mentioned that he would want to save the radiation option for the future like how the CCCs' did. Yesterday his office called us and said if we want to re-dissect he would love to do the surgery. I just wanted to say go fu** yourself. (sorry excuse my language but i am PISSED).
Christine we need to act fast! We just are so lost now on what to do. U of M- Ann Arbor is number #34 for CCC. I called Memorial Sloan Kettering Cancer Center in New York today as they are number #1 but they are closed. I am going to try to get him in Memorial Sloan or MD Anderson. Should I try to do that? Or go to U of M? I know you arent a medical expert but you are so wonderful and knowledgeable.
Having your brother treated at the BEST hospital is always a good idea, however, that is no guarantee of success. I believe that you've already had 3 opinions, and two agree that more surgery is necessary because they feel the cancer is aggressive and still growing and spreading. Getting an appointment at Sloan and MD Anderson will take more time, time that the cancer will continue to grow and spread. Is this in your brothers best interest?
If you do decide to contact Sloan or MD Anderson, do it on Monday.
Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.
Radiation may or may not be necessary, but this is something that his doctors need to address after the next surgery and the results of any tests that they do. If radiation is necessary, he may be able to get this treatment at a hospital closer to home working with the doctors at a CCC.
I know that this is all very confusing and stressful for you and your family. I'm really concerned about delaying your brother's treatment anymore. Time is not your friend here! What does your brother want to do? Ultimately it is his decision.
Best wishes!
Just to add, it took me a month to get a reply from MSKCC. I needed to send them Everything from 2009-2012...such as scans, cd's, original pathology slides, pathology reports, surgery reports, colored radiation treatment plans, totaling over 400 pages, 26 discs, and so on before a consultation date would even be considered. During that waiting time, phone tag, sending more and more materials each call, I went elsewhere to another CCC for a consultation where my surgery, and treatment was planned! Eventually, after calling several more times, MSKCC told me not to come in for a consultation after all, which was ok with me since I felt I found a better place, and doctors, to treat me, and had a definite plan in place.
Each person's experience may be different than mine.
Ak123, I'm with everyone here saying your brother knows he has had surgery and that surgery not only was unsuccessful, it has spread cancer cells over the area that was exposed during surgery. I would get things moving sooner, rather than later. Many of us chase the beast because we are trying to figure out where it is. Your brother not only knows, but has additional information indicating it is aggressive. Time to get moving.
[quote=Susan2992]Having your brother treated at the BEST hospital is always a good idea, however, that is no guarantee of success. I believe that you've already had 3 opinions, and two agree that more surgery is necessary because they feel the cancer is aggressive and still growing and spreading. Getting an appointment at Sloan and MD Anderson will take more time, time that the cancer will continue to grow and spread. Is this in your brothers best interest?
If you do decide to contact Sloan or MD Anderson, do it on Monday.
Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.
Radiation may or may not be necessary, but this is something that his doctors need to address after the next surgery and the results of any tests that they do. If radiation is necessary, he may be able to get this treatment at a hospital closer to home working with the doctors at a CCC.
I know that this is all very confusing and stressful for you and your family. I'm really concerned about delaying your brother's treatment anymore. Time is not your friend here! What does your brother want to do? Ultimately it is his decision.
Best wishes! [/quote] Hi Susan thank you! I have a question what do you mean exactly by .. Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.
How is it more insurance? And is that meaning tell them to take extra tongue out?
Here's a link to the OCF website called The Biopsy Report: A Patient's Guide.
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php This is an excellent summary of the biopsy process and terms. In the Specimen Processing section more information is given on frozen sections.
As I understand this procedure, during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed.
I hope this helps!
[quote=Susan2992]Here's a link to the OCF website called The Biopsy Report: A Patient's Guide.
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php This is an excellent summary of the biopsy process and terms. In the Specimen Processing section more information is given on frozen sections.
As I understand this procedure, during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed.
I hope this helps![/quote]
Thank you so much for the link. I will read all about it tomorrow. We went to our appointment today regarding the surgery and he said exactly what you said that "during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed"
I wish the first doctor did this so my brother wouldn't have gone through two surgeries but you live and learn right.
My brother is on the closterphobic side and he's worried about the nastrogastic feeding tube and his mouth is gonna be traumatized from the surgery, hence he needs a trach to breathe easier. Does anyone know if you can get all the proper nutrients and calories through his IV so he can avoid the feeding tube. He doesn't want both his nostrils and mouth being blocked off and would be more comfortable being fed through his IV for 5-7 days. Thank you
For short periods of time an IV might be used. Check with the doc and let them know what your brothers concerns are. From what Ive heard, the NG tube is no big deal, its easily removed and will not interfere with breathing. Who knows, he may not need the NG tube at all. I would doubt a regular PEG tube would be mentioned for only a weeks worth of usage.
I had the nasal tube for 2 weeks and there is no pain or discomfort and it was easy to use.
[quote=ChristineB]For short periods of time an IV might be used. Check with the doc and let them know what your brothers concerns are. From what Ive heard, the NG tube is no big deal, its easily removed and will not interfere with breathing. Who knows, he may not need the NG tube at all. I would doubt a regular PEG tube would be mentioned for only a weeks worth of usage. [/quote]
Thanks for the response, his aspect is the less tubes attached to his body the better he will feel. He was told that with the feeding tube and trach placed in his body, he will feel like he isn't breathing and may go Into a panic mode. So hopefully we can get him nutrients through the IV, I keep telling him
even though it doesn't feel like you're breathing, you will be breathing perfectly fine!!
I can only speak to the nasal tube but it NEVER interfered with my breathing. After a day with it I really didn't feel it's presence near as much as I thought I would.
Hi everyone,
Thank you all for your help. The current update is my brother will be doing his surgery on 8/11/14 at karmanos cancer center. My brother might even be cancer free right now but the doctor wants better margins. The doctor says he wants to take precautjons so the cancer will not reoccur. Two doctors will be doing the surgery one will cut the cancer out and the other will do the construction part. He will be getting a modified neck dissection, a skin graft from his thigh and forearm to reform his tongue as a free flap. He will be in ICU for two days. He will be jn the hospital for 10 days. He will have a feeding tube, IV and trach. Does any one have any suggestions? Please wish us luck on all of this.
Something to write with talking will not happen for a few days...
hugs and best of luck
A laptop or iPad in the hospital for when his mouth is too sore for talking. My son used his laptop and typed in big letters so those around him could see what he was saying. A dry erase board is good, too - so your brother can express his wants or thoughts. Very best wishes going out to you and your brother for everything to go just the way it is supposed to on the 11th. Keep us updated.
Make sure you understand I'm not a doctor but IMO I would get another opinion before this surgery.
[quote=ak123]Hey everyone,
So literally he was just picked randomly! Was anyone here picked randomly? [/quote]
There are other causes for oral cancer such as environmental factors and secondhand smoke. I think the doctor more meant that they aren't sure of the actual cause. I don't really know if I like the phrasing they chose as it sounds like getting cancer is a lottery.
Glad to hear the good news about the lymph nodes!!
[quote=davidcpa]Make sure you understand I'm not a doctor but IMO I would get another opinion before this surgery.[/quote]
Hi David,
Both NCCC in MI recommended the same surgery. do you think we should get a third opinion?
Not if you are satisfied with your due diligence.
RE the picked at random statement, I have observed during my time on this site that we have 3 large groups of patients, 1. HPV positive, typically non tobacco users and Primary usually found in BOT or tonsils, 2. HPV negative, tobacco users with Primary usually found in the forward part of the tongue and 3. HPV negative, non tobacco users with Primary usually found in the forward part of the tongue. I have asked docs at Moffitt numerous times over the years what do they think cause OC in group 3 and the only answer I have ever gotten (not universal) is perhaps another virus or another undiscovered strain of HPV. Back when I was Dx'ed with OC I was told that the typical OC patient "was an old man who sits in a bar and smokes and drinks all day"! Since I was in otherwise perfect health and didn't use tobacco and only drank socially I pushed Moffitt for a cause to my OC only to be told "what difference does it make, you have the cancer and there's only one way to treated so gets get started". This response really ticked me off especially coming from a teaching cancer center but what else was I to do. I went thru Tx and I also didn't find this site until my Tx was over so it was then that I renewed my quest to find my cause. When I first went on this site there was no mention of HPV, EVERYONE was a tobacco user. I did happen upon a "study" being done by a Dr from Johns Hopkins, Maura Gillison who thought there might be a connection between OC and the HPV virus. I
called her (she answered her phone herself) and after we talked she asked me to send my cancer slides to her (Moffitt tried to talk me out if doing this BTW) and a month later she said my slides tested positive for HPV16 meaning my cancer was not tobacco related but caused by a virus. Ever since then I have been on a mission to make sure the world knows that HPV causes OC.