All,
I've never had cancer before so this is very new for me. I thank you in advance for welcoming me into this forum. I have a complicated history, but quite frankly I was really surprised to find out it was cancer. I'm only 35 years old.
Back at the beginning of December, I woke up with a tooth abcess on my left upper mouth. I was told that I needed to have a root canal. At the meantime, I had a long term problem with my left back molar, where it needed to be pulled and was bothering me by scraping my tongue at the left base. Long story short, I had the root canal and tooth extraction done under general anesthesia. After that, I developed a complication with my tooth extraction and also developed oral thrush from the overuse of antibiotics. I thought that was the reason for the lesion on my tongue getting worse...but apparently that was not the case.
I live in California, but all of my family and friends live in Missouri. The first slight indication I received is that it could be cancer was at my last appointment with the oral surgeon in CA, the day before I left on my trip to visit St. Louis for Christmas. When I was in MO, the lesion on my tongue got progressively worse, so I had a biopsy there. On New Years Eve, whilst I was preparing to throw a huge party, my dentist called and advised me that the biopsy was cancerous.
I am posting here as I have filled in some of my close friends and family, and they have been really supportive, but I don't know what to expect. I'm really afraid and don't fully understand the journey ahead of me. The tongue lesion is about the size of a round nickel. I know that surgery, radiation, and chemo may be involved. I work at a small but very promising start up company in the SF Bay Area. I love my life, have a great husband and a condo, have three kitties, and my job is great. I don't know what to do.
As far as what caused it, I'm really not certain. I do have a history of drinking and smoking, but am still relatively young. I also have HPV which has caused cervix cancer scares in the past. I found an awesome E-Cig in MO called "Ovale" so I've been using that diligently, but it's tough.
I'm scheduled to see an ENT with Kaiser (an HMO in CA) this Friday. I hope they do have a sense of urgency. I don't want to die, but I can't afford care at Standford which is what my oral surgeon recommended.
I thought I would introduce myself and read up on other stories. It's been so hard to explain to my family, friends, and management at work. So, I just want to make some new friends and connect with others that are experiencing this as well.
Thanks so much for your time in reading this - if you got this far! :-)
Gina
Gina, welcome to OCF! So sorry you are facing a battle with oral cancer. Glad you have found this site to help you get thru it.
The best advice I can give you is to go to a top cancer center. It really can make a huge difference! Here is the list of NCI cancer centers.
http://oralcancerfoundation.org/resources/cancer_centers.htmNutrition will be a huge factor in how easily you get thru this. Every single day you will need 2500 calories and 48 oz of water, minimum! I know it sounds like its too much but this is the least you should be taking in. Your age will hopefully help you get thru it easier too.
Get a full blood count including thyroid. See your dentist and get fluoride trays made any teeth pulled which are not in good shape. Get your hearing checked.
Always take someone with you to doctor appointments. Read here and on the main OCF pages and educate yourself. Line up friends and family. Anyone who offers to help write down their name and number and tell them when the time comes you will contact them.
When in doubt ask questions. We are here to lean on for info and support.
Best wishes!
What type of cancer did the biopsy indicate. Have you been Staged? Just because you have vaginal (I assume) HPV doesn't mean that you could have oral HPV as there is no study that indicates it can travel throughout the body. Also if your cancer is located in the forward tongue then it's very UNLIKELY that HPV is the cause.
Sorry you have to be here but this site will prove to be worth it's weight in gold.
Keep us posted.
Gina, sorry to hear about your recent diagnosis, and having to join, but welcome. The first few weeks is like a hurrucance coming at you, but it will slow down. When you see an ENT, usually more tests will be ordered...a PET, CT or MRI, and an endoscopy under general anesthesia, along with usual pre-surgery work up, and biopsies taken of any suspicions, so the type, extent of the cancer, if there is any other involvement, can be determined, and tumor graded, staged, and if HPV is related or not. Based on the findings, it will be decided what treatments will be appropriate, but the lesion sounds fairly large being the size of a nickel, but the depth is just as important. Sometimes surgery is done first. You may be referred to see an MO and RO, at some point, Medical and Radiation Oncologist, if they will be involved with your treatment, as well as others, if needed, and maybe another ENT if beyond the scope or expertise of the doctor. Basically, you will need a multidisplinary team of professionals to treat this disease, and is why ChristineB recommended the NCI's list of Comprehensive Cancer Centers, in addition too, having another person present with you to write down what is said since most will be forgotten in the heat of the moment.
You can always get a 2nd opinion, and suggest you do, and to start keeping your own file with copies of any and all reports for your surgeries, biopsies, payhology, blood tests, including the CD's, x-rays for future reference. I heard of Kaiser, and may want to see if any of your doctors are US News Report's Best Doctor's list, if you are unable to go to Stanford.
The other things often not considered, and may not be necessary, but how you will sustain your future finances, medical, and employment, if you are unable to work or need extended time off? You may want to see what your employments benefits are, and any city, state and federal benefits available, before needing them. The social worker at the hospital can assist with this if needed.
Good luck with everything.
Thank you Christine - it's nice to virtually meet you! I've read some of your other posts on here and it sounds like you've been through a lot. I really appreciate your advice. The 2,500 calorie thing will definitely be a challenge, I don't think I clear 1,500 on a good day. I've never been a big eater and now it's really painful to even try and chew. But, I'll try...
Sadly, my husband is one of the best Indian chefs in the Bay Area! :-( But I think spicy food should be avoided for awhile.
Hi David,
Thanks for your reply! I'm looking at the biopsy report right now and it indicates "invasive squamous cell carcinoma". It's on the left side of my tongue, towards the back. I don't know if that means "BOT". I'm really going to have to figure out this auto-signature thing! :-)
Thanks again,
Gina
Great to meet you Paul, thanks for your advice! I am seeing an ENT on Friday, so I suppose we will take it from there. My dentist seemed a little bit nervous about Kaiser because they are an HMO, but there are some conveniences about being in a network. And it's inexpensive, a lot of procedures are covered with a very modest co-pay. My boss talked to HR yesterday and said that she would try and ensure that my finances are covered as much as possible, so that is good news. Instead of having to take a leave of absence, I can work from home as long as I can talk and type. She also said she would give me projects that don't require travel until we know more information. If my speech is affected though after surgery, I will need to take a leave of absence as I do have a lot of direct interaction from clients. So, we will play it by ear. I just wish I had some sort of schedule, what to expect and when...like a project plan! But, it sounds like with having a whole team to treat you, it's pretty hard to know everything in advance.
Gina, there are ways of boosting the calories without actually eating more in terms of volume. For example, add skim milk powder to whole milk to make fortified milk and then use the fortified milk to make smoothiies. Try to eat a lot ( I told people I was fattening up my husband) prior to treatment and eat all your favorite foods to your heart's desire. I tried very hard to keep my husband at 2000 calories a day and still, he lost weight in the course of the treatment. I totally agree with Christine that you need as much energy as you can find to fight the cancer and to help the body repair itself. Hydration is vital, it can make the difference between a feel-good day and a crappy day.
Hi Gina,
My husband is a Kaiser member, but was treated out of the system because Kaiser in our area does not support that level of therapy. I think your area may support more sophisticated treatment, but I'm not sure. In any case, if you get your local Kaiser book out, or look it up online, there will be a process for getting a second opinion, which is never a bad idea, regardless of where you will ultimately be treated.
When you see the ENT, bring a list of questions to ask the doctor and write down the answers. If you have a notebook, you can staple everyone's cards to it so you won't lose them.
I would also suggest that you look at the NCCN treatment guidelines on this site
NCCN Treatment Guidelines - print the ones for oral tongue and oropharyngeal (base of tongue) since we don't know which it is and bring them with you. These guidelines constitute a project plan for treatment - but what we don't know is exactly what type / location your lesion is, as well as the exact stage. They are NOT fun to look at, but will give you a general idea of the possibilities. it will also impress the ENT; the more that you and your doctors think of yourselves as partners in this fight, the better.
Best wishes - this is a heck of a way to start the new year.
Maria
Thanks everyone! I haven't seen an ENT yet but the link is very helpful. I should know more tomorrow once I have my appointment and hopefully be more specific about what I'm facing.
Hi Gina,
Based on what you have said, it is not base of tongue (you can't actually see the BOT as it's in your throat). I had a similar diagnosis and similar age (I'm 39).
You will likely have surgery to remove the tumour, and surrounding tissue and based on the size, potentially a reconstruction of the lost part of the tongue (called a glossectomy) from another area of your body. For me, it was from my forearm.
Radiation and chemo will be determined in consult with an oncologist. Oral cancer has high recurrence risks, and if it has spead to any of your nodes, is almost a guarantee.
This is not a death sentence. It is cancer, it is scary, but it is beatable.
Good luck with your tests and keep us posted.
Hi Gina!
Like the others, I'm sorry you had to find this site. I'm fairly new here too, but definitely appreciate the information I've received from everyone here! You have already received some GREAT information in the previous posts.
My advice is to take what you KNOW so far and work with that. Try not to worry about what may or may NOT happen. Yes, it is good to think about possible actions that may need to be taken, but try not to worry about it. Write down questions you have so you don't forget them. Take someone with you to your appointments. They often think of things you don't and remember more than you do.
I was diagnosed with tongue cancer when I was 36. Mine was also at the back of the tongue, but not considered BOT. It was right next to the molars. I was diagnosed on 8/21/08 and got an appt with the ENT surgeon right that afternoon. He ordered labs, PET, and set up appointments with MO and RO. After a frantic week of appointments (my sister flew in to go to all of my appointments with me), I had surgery on 9/1/08 to remove the cancer and lymph nodes on right side of neck. Thankfully, no nodes were involved, margins were clear (3.5 cm tumor) and I didn't need further treatment. I know many others are not as fortunate.
I was out of work for about 5 weeks, went part-time for a week, then back to full time. I did have trouble speaking for a while. (Well, I didn't have trouble speaking; people just had trouble understanding me. :-) ) I saw speech therapist for just a few weeks which helped tremendously! Now only I can tell that there's a difference in my speech, its so minor.
I'll be thinking about you tomorrow at your ENT appointment. Good luck! You CAN do this!
:-)
Teresa
Sorry to hear about your recent diagnosis Gina. I also live in the SF Bay Area and was diagnosed young. This is a great forum - let me know if I can help... Been there, done that excluding chemo.
Keep us posted.
Hi Gina, how are you? Hope you are able to do well with all this crazy news. Its not easy to have the news about tongue cancer when you are young. I know the feeling...
Its been one year and one month feom my surgery and diagnosis.
I live in Brazil - and glad to know you are from San Francisco. I'm visiting the city in march and I also work with start-ups and digotal marketing business.
Hope you have a nice progress on your treatment, and any doubt about surgery feel free to ask.
Hi Lola! So glad to hear your suscessfull case!
All,
Thanks so much for reading my post and sharing your stories. I feel very inspired to hear about similar situations, and feel like there is a light at the end of the tunnel! I am very nervous about the surgery. The hemi-glossectomy and partial neck dissection is scheduled for Wed, 1/23.
I don't still have the full diagnosis as I only got my PET scan done this last Sat. morning, so I hope to hear more tomorrow. I did have an MRI and met with an oral surgeon. He does not think it has spread, but that it is stage 2 based on the size of the tongue tumor (2.8 cm). So, I guess I am T2N0M0, as far as I know. I would like to get the confirmation from the doc before I build my auto-sig. :-) They think it was caused by HPV but still not sure. I am a former smoker, I quit 9 days ago cold turkey and haven't looked back since.
My surgeon thinks they will need to remove 1/3 of my tongue. They are not sure if they will need to fill it up with a skin graft - he said they will assess it first and then see how big the hole is. He gave me the option to do a skin graft from my thigh, or have skin cells from a cadaver used. Has anyone every heard of this? I voted for the cadaver as he said the results would be the same, and I wouldn't have another wound or scar to deal with. I don't care about scarring, but one less wound would be nice. As long as the results are the same, I don't feel squeamish about the cadaver.
I'm still not sure about the neck dissection. I wrote down a note about drainage bags but I was pretty much in shock when I was taking notes, so I don't know. I just pray it hasn't spread. I supposed the PET scan will be the final test to gauge that. I also hope that getting the first results from the biopsy on 12/31 with surgery scheduled for 1/23 is soon enough. I want it done with this surgeon, he is supposed to be one of the top two in Kaiser in the bay area. So, I did wait another week and he said it should not be a problem.
I will post more once I have the final results...probably in a different topic forum I presume?
I did speak with my employer and will be on short term disability with 60% pay - we are planning 6 weeks for now but I hope to go back sooner. They have been very gracious and i know my job will still be there when I'm better. It was very nice of them considering I've only been there 6 months...some like my boss are even donating some of their unused PTO to minimize the financial impact.
I just pray, pray, pray that I don't need radiation and chemo. But, if I do, I know I will have support here to help me through that scary time.
Thanks again to everyone who responded...I don't feel alone!
Gina
Hi based on location - oral tongue - chances are your HPV negative. You will have drains but the neck dissection normally isn't too painful as the nerves are damaged post op so you'll be more numb than anything. The drains should be removed a few days post op.
You might look like you've gone a few round and be uncomfortable but pain isn't too bad. You will likely need physio post op for your shoulder but other than that recovery is surprisingly quick. Best of luck.
The donated skin is called Alloderm. I had it placed over my carotid artery after a RND whereby the neck muscle protecting it was removed. Major hospitals keep a bank of Alloderm for this, and other uses.
Gina, sounds much like me. I was not given the option of a cadaver, they took from my forearm to rebuild my tongue.
I think the risk of a cadaver would be that it is foreign, and your might reject it (that's how it works with organ donation - I'm a kidney donor to my dad). With your own tissue there is no risk of that, so it is something you may want to explore further with the surgeon.
You will likely have 4 drains from your neck, which is simply to aid in draining a buid-up of fluid in your neck. They tend to take them out one at a time, when the levels in each drain drop. I didn't feel a thing when they removed them, so no worries there.
Good luck and keep us posted.
Good question, and here is some info from Alloderm:
"Donated human skin tissue supplied by US AATB-compliant tissue banks is aseptically processed using LifeCell's proprietary technique to remove the epidermis and cells that can lead to tissue rejection and graft failure. The result is an intact acellular matrix of natural biological components that promotes rapid revascularization, white cell migration and cell repopulation, as shown in animal studies."
My ENT needed to use Alloderm since he did not plan on a RND, I was supposed to just have a MRND, otherwise he would have done a flap. Luckly, the neck muscle was removed, since it contained cancer. The Alloderm had to be removed in a subsequest surgery, peeled off carotid artey, to do a pec flap for a different reason other than tissue failure, which was not enough protection on the carotid artery for additional radiation.
Thanks, everyone! I have written down more questions to research and ask my doctor in our next appointment. It sounds like I should really dig into the cadaver vs. skin flap option to really see what the benefits and drawbacks are before I make a decision.
Still waiting on the results of the PET scan, so I probably won't have the information and firm diagnosis until Wednesday. But you have all helped me come up with a pretty comprehensive list of questions and concerns - so I hope to share more later this week.
Thanks again,
Gina
Hi Gina,
It sounds like you have a pretty good grasp of what to expect. I'm rooting for PET results that only show the known tumor. (Even if PET shows possible node involvement, pathology results may still be negative; mine was.)
One thing I didn't ask my surgeon about was what to expect right after surgery. I had thought/assumed I'd be in hospital 2-3 days, but at my pre-op appt just a few days before surgery he told me 5-7, which is when the seriousness of the surgery hit me. Ask what kind of tubes you'll have when you wake up. I had EKG, drain, NG tube, IV and oxygen. Will you have to stay in ICU? (I did from right after surgery until about 9 or 10 the next morning. I don't think it was expected.) Does your surgeon expect you to be able to swallow/drink shortly after surgery? Just ask whatever you can think of. Maybe just asking what to expect right after surgery will be enough for your surgeon to volunteer all of that info.
Its good that you're writing stuff down, but don't forget to listen. If there's something you wrote that you don't remember why, feel free to ask about it again. If someone is going with you to appointments, perhaps they could write while you listen.
Good luck! You can do this!
:-)
Teresa
Gina
You have gotten great advice. In considering cadaver vs your skin, you mentioned that the surgeon would use the thigh for the graft. My experience was that if they take it from the folds of the thigh, it leaves an almost invisible scar, barely noticeable.
Since I did have base of tongue, my surgery required the tongue flap to be from my wrist due to all the veins and arteries that could be tied into my mouth. But they filled in the gap in my wrist with a graft from the folded skin in my thigh. What was amazing was that the thigh graft healed faster and with little or no pain and just left my left thigh firmer and leaner than the right one.
Add that to your list of questions to see if your experience would be similar.
Charm