Hello Everyone,

My name is Katy and my Mom was just diagnosed with Oral Cancer. We're not sure what stage it is yet, but doctors think that it is either stage III or IV. She had an infected tooth for 2 years and did not get it checked out by a dentist until Fall of 2011. He thought she had leukoplakia, but my Mom thought she was okay so did not get it checked out. Later on, in February, she developed a large lump on the right side of her neck (lymph node). She had also had a sore in her mouth, and it was progressively getting worse. We just found out last week that it is squamous cell carcinoma with possible mets to lymph and lung. My Mom is only 48 years old and is not a smoker, drinker, and does not have HPV.

On top of all of this, I recently moved across the country away from her (husband is in military) and I am 8 months pregnant. This is my first pregnancy, and I've been dealing with health problems of my own. It hurts me to not be by her side at this time, I just want her to be healthy. She has lost lots of weight and I am very concerned. Her and I are extremely close-she is my best friend. I am lucky to have found this forum and I look forward to talking with all of you. Thank you for reading my post, and please pray for my Mom to heal.

Hello, i�m sorry for your mom. The oonly advise i can do is to run to get treatment as soon as possible. I was really resilient and insisted a lot with tons of doctors that presumed it was impossible that i had oral cancer so young. But I had. Please ask your mom to go as fast as she can to a cancer center. And good luck, praying for everything to be fine with your family.

Welcome to OCF! Im so sorry to read of your mothers cancer. It is a very stressful time for you to be going thru this with her. I know being far away will make you worry even more. For your own health, please try your very best to stay busy so you dont make yourself more upset about her situation. Im so glad you found this site to help you both get thru this. OCF is full of important info and kind, caring members to help you both.

There are quite a few members who have had no known cause for their cancer. At this time no matter what caused it, the treatments are the same. The only cures are surgery and radiation with or without chemo. The best thing she can do is to go to a large comprehensive cancer center (CCC). This is where a whole team of specialists will work on her own individual case and see many oral cancer patients every year. It will give her the best chances of a full recovery. Even if she already has seen some doctors, a second opinion at a CCC is a very good idea.

http://oralcancerfoundation.org/resources/index.htm#centers

If she is already losing weight, she will need to turn that around right away to help build her up before any treatments. Her daily intake should be a minimum of 2500 calories and 48 oz water. I cant stress this enough, especially if she is already losing weight. Many of us have had success with Carnation Very High Calorie. It has 560 calories per 8 oz can. It can be easily ordered thru the Amazon link (the green box on the main forum pages). A case runs about $48 with free S&H. Her doctors may talk to her about a feeding tube. This is a highly debated subject here with each side giving arguments both for it and against it. Im one who thinks its an important tool to help the patient get thru this easier. She will still need to swallow water daily to help her retain that function.

Prior to beginning any radiation treatments she should do a few things to prepare. She should be seeing a dentist to get flouride trays made and any teeth removed which arent in the best shape. She will also need to get a hearing test done and also a full blood count including thyroid.

Feel free to ask any questions and we will help you. Your mother may want to also join OCF herself so she can learn about her illness. Best wishes with everything!

I'm so sorry to hear what your mom is going through... Has she been scanned? I gather since she has a definitive dx of cancer that she has been biopsied. They can't tell for sure the extent of the involvement without a scan. Hopefully it's localized to the nodes, and her mouth. I too had no precursors including the HPV negative situation. Christine's right the cause at this point is unimportant. I know she doesn't live near you but you in fact have one of the best hospitals in your area - md Anderson. Make sure she gets to a ccc - and quickly things should go into hyperdrive at this point if they dont tell her to push to get them moving. And yes on the nutrition! Though tell her not to load up on junk calories - make them healthful as they will help her fight. Hugs! And do try to relax pregnancy is always a stressful time.

Thank you all for your kind words and responses. I really appreciate all of the advice, as this is a very new situation for me. You all seem to have been through quite a lot with this disease, and I hope all of you are doing better.

She did have a biopsy of the lesion on her tongue and it came back positive for squamous cell. She is having an MRI and CT scan this week to check for mets. She has quite a large lump on the right side of her neck (how we knew something was wrong). She is currently being seen at Boston University Medical Center, which I hear is excellent with oral cancer surgery and treatments. Also, my Dad is a physician, so that helps as well.

We are really hoping that it is just localized to her lymph nodes. She has been complaining of chest pain and shortness of breath, so we are concerned that it could have already spread. My Mom has always been in shape; she exercises more than an hour every day. Doctor said she has that on her side. She also has changed her diet drastically. She is now a vegan and is eating very well. She lost about 30-40 pounds since December and is now trying to put it back on. I will get the Carnation for her, thank you for the advice. I think she drinks muscle milk right now for calories. The doctors haven't talked to her much about treatment yet, as she has not had the scans. I'm hoping they will do the surgery asap. It is very difficult to not be with her, as I am her only family besides my Dad.

Thank you all for listening, and I will take your advice and make sure that they get the ball rolling on this as soon as possible.

I wish I had more time to write as I'm sneaking in a post while I'm at work, I unfortunately know how you are feeling as my mom was handed a similar diagnosis last August. My mom had her surgery at Boston Medical as well, they are excellent! Who is she seeing? I know most of the oral surgical team at BMC from my mom's surgery, the SICU there is fantastic as well and I can't say enough about all of the nurses there either. My mom's team included Dr. Salama, Dr. Jalisi, fellow Dr. Nadershaw, and 5th year surgical resident Dr. Helal. They are all fantastic at what they do as well as compassionate. Dr. Salama's nurse practitioner Maryann is amazing as well and actually became a good friend of my mom's. She is in good hands. Make sure she gets her treatments at Dana Farber or Brigham, my mom decided to stay w/ her breast cancer oncologist who was more local to her in the suburbs and I'm afraid that made a bit of difference in her outcome...

Feel free to ask as many questions as you have!!!

Hi there again. From a fellow veg head, tell her to buy a good vegan protein mix and start making herself a shake in the morning that has a lot of protein and fresh fruits etc... She'll needs to get her protein up to help make it through surgery and treatments. Hopefully the shortness of breath is not related to the cancer being in her lungs, but rather exhaustion related to having cancer. I too was a veg head and worked out once a day 6 times a week. It does help to be in shape going into this whole thing. It's also fantastic your dad is a dr. this will help immensely because he probably has contacts, and most importantly can advocate for your mom. Hugs... let us know what is going on. ;o)

Hey, Katy, so sorry what your mom is going through. I was 63 when I was diagnosed and mine was stage IV. I was very healthy, too. In fact the last time I had been hospitalized was 1979 when my son was born. I also never smoked in my life, was a light social drinker and was negative for HPV. The most important thing, of course, is to get treatment as soon as possible, and to eat, eat, eat. Keep us posted and remember that we are all here for you. Her good health should help her, and the fact that your dad is a doctor should also help. I am nearly three years out and am cancer free!

Boston Medical is good however if you need a second or want to be sure your mom gets the best medical care available anywhere...Mass Gen is the option. It's ranked #2 in Ear Nose & Throat, 7th in Cancer Care and #5 in rehabilitation "Nationally". Literally Mass Gen is one of THE best medical facilities in the country.

Just a thought.

Eric

Great point, Eric. Mass General is a great hospital as well. Can't really go wrong in Boston. We were never patient enough for the time it would take to get the 2nd opinion though, it was just too aggressive to waste any time.

LD, it definitely helps that your dad is a physician. It's always wise to get a copy of your records and send them out to a few different docs that your dad may have connections with.

Let us know how things are going!

Would love an update.
Kathy

Hi everybody!

Amy- My Mom does have Dr. Jalisi and Dr. Ezzat (plastic surgeon). She really likes Dr. Jalisi. Sorry I haven't updated in awhile. Life is hectic with pregnancy. So my Mom had an MRI and CT Scan done this past week. The MRI showed 2 nodes (one on the left side of her neck and one under the mandible) that looked suspicious. Doctor was not concerned about the one underneath the mandible, and just suspects that the other one could be cancerous. Radiologist thinks there is a greater than 50% chance that it is NOT cancerous. CT Scan was completely clear. The doctor did a biopsy of the lymph node and we will know by Wednesday if it is cancerous or not. Right now she is considered Stage 3, but if biopsy comes back normal she is considered Stage 2. We are praying that everything will come back normal. We were thinking of getting a second opinion, but considering timing and the fact that my Dad is very involved with her care, we are going to stick with BU at this point. My Dad has been asking all around for advice. We are lucky to know so many good doctors. So far the scans have been coming back much better than expected, although we are not in the clear yet. I will update again soon. Hope everyone is doing well. Take Care.

So glad her lungs are not involved! Not sure why the are concerned about the nodes, despite the factthat I had none involved according to my ct and MRI my otolaryngologist / so told me up front he was doing a neck disection too. It's pretty standard with tongue cancer. thankfully it was planned as by the time I went into surgery one was involved. Also that one was under my mandible. Hugs and good luck.

Oh I'm so thrilled to hear her scans are looking good! I'm also glad to hear she likes Dr. Jalisi, my mom loved him too. She said he was larger than life when he first walked in the room. He is a very talented surgeon, the whole team there is good so I'm glad your mom and dad feel comfortable with her care.

Totally understand life is hectic with your pregnancy and trying to stay on top of your moms situation. But please keep us informed when you can. Also, I am obviously close in proximity to your parents so if there is anything I can do let me know!

Thanks for the update. So glad they are happy with the team they have. That makes the battle so much easier.
Good luck in the next couple of months. Just write when you can!!

Welcome to ocf Katy! Sounds like your mom is in good hands. Praying for good results!

Thank you so much everyone. Haven't updated as I went into pre-term labor at 33 weeks. Luckily, the doctors were able to stop it and all is good. We found out that my Mom's lymph node came back positive for cancer. Luckily they believe it has only spread to that node. She is having about 1/3 of her tongue removed and a selective neck dissection this Thursday. I'm hoping the operation will go smoothly and that she will be feeling better afterwards. I will keep everyone updated when I can. Thank you for all of your support and encouragement.

Oh, my goodness - glad that your labor is continuing normally! Best wishes for you and your mom!

Good luck with your pregnancy... as for your mom's surgery... you'd be amazed at how quick the recovery can be... Radiation and chemo on the other hand... takes a while! I'll say a prayer for her!

Are they going to do the Rad?

Thank you! We need all the prayers we can get. My Mom's doctor hasn't discussed chemotherapy and radiation with her yet. I think he wanted to wait till after the surgery. He did mention at the beginning that if the cancer had not spread very much he wanted to avoid doing it at first. Not sure, will find out.

Loving Daughter,

I am so sorry to hear of your mother's diagnosis. It's very hard news to take. I wish for her (and your family) that she has a good prognosis.

Being pregnant is indeed a stressful time, in of itself. I'm glad to hear that your preterm labor was halted. Keep that little one in there as long as possible! I was pregnant when I was diagnosed and treated for OC. I have the fortune of living in greater Boston, as well, where we have plenty of top-notch facilities to chose from.

Please be sure to get all of the physical and emotional support that you need, especially now. Pregnancy is a time when you should be dreaming of the wonderful things that motherhood will bring. Please try to keep your mind on track, as I know that you are nearly there! This is not an easy task, I know.

If your parents are having difficulty getting support, things will be challenging during her post-operative recovery and then radiation, chemo, or whatever they decide on for a treatment plan. Your parents will need all the help they can get. I made a list of contact of people who were willing/able to help. I gave them to my husband so he could keep everyone updated, when I was unable. Also, one of my friends used a support system website for me...she acted as the administrator. Basically, the patient/family in need of help lists their needs...anything from rides to/from doctor appointments to grocery shopping/housekeeping. I even posted needs for playdates for my toddler daughter.

The website is called http://www.lotsahelpinghands.com/

I live northwest of Boston. I'm not sure whre your parents live, but if I am able, I may be able to offer some support. If you need anything, feel free to send me a private message (PM).

I wish you the best of luck on your upcoming delivery as you welcome your new baby into this world!

Take good care,
Kerri

Frankly I would push for rads and chemo - if it's in a node - I would want to have it done. I know some drs take the wait and see method, but ideally you hit it as hard as you can first time out... If you give it a chance to spread it will - and microscopic cancer in the other nodes isn't visible on scans. Chemo and rads is designed to get any strays. Hugs and good luck.

LD,
As you know, my mom had the same doctor as yours and he didn't discuss treatment until after surgery with her either. He wanted to see what the lymph node involvement was first. He was pretty sure she would be having radiation to her head and neck, but the lymph node involvement would determine if she needed chemo with it... which she did. I trust he will make the right decision for your mom. I do agree with the others here though, as much as chemo/rad sucks, it is worth it to decrease chance of recurrance. As mentioned earlier in this thread, she will recover from the surgery surprisingly quickly. I watched my mom improve leaps and bounds each day, was amazing to see her walk out of the hospital 8 days after a 10 hour surgery. She is in good hands so I am sure she will do just as well.

I will continue to hope and pray for you and your family!

Katy

What a great daughter you are and what a wonderful mother you will be. All I can add is that since radiation and chemo are possiblities, please insist that your mother's doctors do a basic blood test for her TSH (thyroid levels)so she has a baseline. Without that, her doctors will only be guessing as to what levels she should be after radiation. It's a simple blood test and can even be combined with the ones she has to get anyway. Most oncologists do not do the TSH test until after the radiation when it is too late and basically worthless.
Charm

I hope your moms surgery went well today. Keep us updated.

Hi Everyone!

Thank you all for your kind words and advice, we appreciate it very much. My Mom was just released from the hospital today, only 3 days after surgery! So proud of her and happy she seems to be recovering so well. It was not as bad as originally first thought, so the doctor was able to remove the tumor from her tongue and it resected upon itself. They also removed the cancerous lymph node from her neck and surrounding ones to test. I think the surgery was around 5 hours and she did great. She was very talkative on the phone and I could understand every word she spoke. She slurs a little bit, but that is to be expected. She said it is very painful though and is trying to stay positive through the amount of pain she's in. She is also upset because the side of her face is drooping from the lymph node removal, and she wants to know when that will improve? I told her to just give it time, and she will heal. I am just so happy she made it through the surgery successfully and seems to be doing better.

I believe Dr. Jalisi did discuss treatment options with my Dad. I didn't ask my Mom, but I'm sure he discussed it with her as well. We plan on following whatever treatment options are the best for her at this point in time.

Kerri-Thanks for sharing your story. I can't even imagine what it must have been like to be diagnosed with cancer while pregnant. I am so happy you got through it and had your beautiful baby boy. I'm expecting a boy too

Amy-My Mom LOVES Dr. Jalisi! She just raves about him. He did a tremendous job on her surgery and I'm so happy that he's taking care of her.

I will continue to keep you all updated when I can. I'm so happy to be here on this board and you all have been such a great help for me during this most difficult time. I hope all of you are doing well and I look forward to talking with you soon.

Katy

SOOOOOOOO glad to hear how well your mom is doing! To go home just 3 days post surgery is amazing! Even though she is experiencing some pain that is only temporary and manageable and her positive attitude will take her so far.

I'm so relieved for you that you can relax a little bit.

Fingers crossed all the other lymph nodes come back negative! <3

Katy,

I am so very happy to hear that all is going well with your Mom. She must be one tough cookie! It sounds like she is a fighter .

It's so exciting to be expecting a baby boy! Either one, of course, is exciting! When is your due date? Were you able to have a baby shower yet?

My sister was also pregnant with her first child when I was diagnosed and treated. My niece is exactly one month older than my son. I was planning her baby shower and had already sent out invitations, got favors...the whole bit...when the bomb dropped. I got released from the hospital the day she was supposed to have her shower. She refused to have it without me and I still feel heartbroken about that. I will certainly be planning a shower for her second baby when the time comes!

I hope you are feeling well. Please keep us posted as you are able!

Hugs,
Kerri

Yeah! So glad your mom is feeling better!!! And did well - the droop may be nerve damage or just swelling from lymphedema - hopefully she will recover quickly. I didn't droop so maybe someone here will jump in to give you more info. HUgs an blessings to you all.