New here, seeking advice, questions to ask for treatment approach, question on surgery

ReneB

My husband was diagnosed 22nd of December, 2021 with HPV+ SCC the right tonsil, Stage Il. Additional history…presumed cT2 N1 MO SCC of right tonsil, HPV+, P16.

He completed 33 rounds of radiation along with 7 chemo on 4/5/2022. His MRI on 5/27 came back clear. 6/16 CAT Scan showed positive lymph nodes and throat...subsequent biopsy confirmed positive lymph nodes, negative throat. Lymph nodes were removed. Mid August doctor did not like the way a healing sore looked, biopsy came back positive. Subsequent MRI was positive as well.

Had a lengthy doctor appointment this past week where the plan is an aggressive surgery to eradicate the cancer which we were told was mutant, though no additional tumor information has yet been provided. The mutant HPV is because it was not receptive to the cisplatin chemo.

Is this surgery the right approach at this point? It has been scheduled at the end of the month and it’s hard not to be afraid after the explanation of the procedure. Are there other experts we should consult? What type of information should we be seeking about the case and tumor markers to properly treat?

We feel like we are always playing catch up to this. We feel lost. I want to be a strong advocate for my husband since he has the hard part of healing.

Any tips, experiences and resources would be appreciated.

TawandaJ

Hi Rene,

I am sorry you are going through this. Have you gotten a second opinion at a major cancer treatment hospital/center? If not, I would suggest getting one ASAP. A second opinion can either confirm your physician's treatment plan, or provide you with alternate options to consider.

Wishing you and your husband the very best!

ReneB

https://csn.cancer.org/discussion/comment/1699985#Comment_1699985

Thank you TawandaJ. His doctor is chief of the Division of Head and Neck Surgical Oncology at a well known NCI hospital. So needless to say we feel like he's had the best but now we don't know what the normal route is or maybe should have been. Because he's the Chief surgeon of HNC we have felt or thought we were in the best hands. Everything seems to have been on par but again this is all very new to us, as I'm sure it is to most everyone on this forum. I guess, we don't know at this point what a second opinion would do or say (and we don't want to loose time. Times seems to be one thing cancer controls)...I guess it might be comforting to hear this is a normal path for these mutant HPV cancers.

He is feeling so alone right now. Everyday he wakes up, his throat is tight, his tongue stuck to his mouth and more swollen than the day before. This is due to the treatment and surgeries he's had and the recent biopsies that won't heal due to the what we were told was the cancer not allowing that. And just when he finally began getting saliva back, taste and the desire to eat. He feels like it's such a step backwards and is totally discouraged or depressed...likely both. This messes with his mind in thinking the cancer is growing, everything is dire. And due to trismus from the radiation he can open his mouth at 25mm after all day of stretching and in the morning starts all over again with a 10-15mm ability to open. Which is something else we are worried about with this surgery as they will be going through the jaw and we aren't sure if he will be able to continue doing his mouth stretches after surgery and recovery seems quite extensive and slow.

Thank you for responding. I am aware I gave TMI :) but again this is all new and after reading several other posts I just wanted to put it all out there :) We have our list of questions and continue adding to that list for the next appointment. I just want to help give him some relief from all that he is feeling.

ratface

It's impossible to know all the answers at this time. Cancer has a way of messing with the mind, his and yours. You are a good spouse and trying to be his best advocate and doing a great job of it. He needs support and confidence from you, you can chase second opinions and even third opinions, but from what you describe his doctors seem quite competent. Trust them if it feels right to you. They really do take some of the burden and it's ok to share that load. I don't have any experience with mutant reactions, cisplatin worked for me, but there are other types of chemo, platinum based treatments were the gold standard but I know Erbitux followed and took over with the increase of HPV cases. Surgery is always the preferred treatment when the odds are in favor of getting it all. It seems prudent to me. Your doctors might have valid reasons for not not attempting a different chemo protocol. His initial diagnosis seems encouraging and surgery seems like a natural progression, BTW , the neck dissection is much more tolerable than cisplatin and radiation although it has a scary name. I commend you on your sincere desire to do all you can and it sure sounds like you have left no stone unturned. All the best to both of you in your journey and you truly are doing everything you can.

ReneB

https://csn.cancer.org/discussion/comment/1700014#Comment_1700014

Thank you so much for this it was quite comforting on what is a bad day for both of us in regards to our mental state. His chemo was platinum but the cancer didn't respond thus making it a refractory cancer. I guess what we want or need right now is to be told this is okay, this is normal, this does happen and yes you are in the 10-15% of HPV patients. He has been in incredible pain and there has been no relief. Nothing seems to want to heal and we know that is the cancer not allowing that. He has another biopsy tomorrow and even though we know it's necessary and needed we also know it's going to leave a wound in the back of his throat thus making eating, swallowing even more painful. Days are long and will continue to be that way until surgery. Thank you for your comforting words!

wbcgaruss

ReneB I have seen your post for a bit now but didn't know 🤔 how to answer. I would say ratface has given you an excellent response. I agree trust in your medical team and be confident and move forward. You have the best his doctor is chief of division. Neck dissection is not difficult. Trust in God, pray 🙏 and be confident, and take one day at a time.

Take care and God bless Russ 🙌 🙏

TawandaJ

https://csn.cancer.org/discussion/comment/1699988#Comment_1699988

Hi Rene,

It sounds like you have a good treatment team. Like Ratface said, it's impossible to know everything and you will drive yourself crazy trying to figure it out. I would say, if it doesn't feel right, if you think you are missing something, or if things are getting lost in translation, do not stop yourself from speaking up and asking the necessary questions. If you feel like you need validation for the treatment plan, seek validation. I agree with being confident for your husband. At the beginning of my husband's treatment I made sure he signed the authorization forms so that I could speak to the doctors and nurses with or without him being present. There were a few times I sent an email or made a call for further explaination, a concern, or to get advice without my husband being present or even aware. It helped me get what I needed while not alarming him.

My husband did not want to participate in a support group even though he was down and feeling alone. When I felt he needed it, I read to him some of the encouraging words and experiences from this group. It helped.

Finally, know that you are doing the best you can do and that is all you can do.

Best,

Tawanda