+ Reply
Log in or Register to participate in these discussions
HPV tongue cancer
dayone
11 Posts
Hi everyone.

I am three months three weeks past treatment of 35 radiation and 6 chemo for HPV cancer of the base of the tongue and right tonsil area plus Mets to the right neck region

I had my follow up PET scan last week and the scan showed that there is still cancer in the right neck region and I can still feel a lump in there. But it is much smaller than what it originally was.

has anyone else experienced still having active cancer at this point and what did you do. The radiation oncologists is suggesting to wait 2 months and repeat PET scan and if still there surgery. I suggested that I would rather be on the surgery list now and the way the hospitals are right now get the PET scan at two months and surgery can be canceled if resolved.

personally I would rather have it removed now but know that the chances of getting surgery time are slim.

thank you.
3 Replies
supersu
1102 Posts

@dayone

good morning! thank you for your post - and welcome to this community. every question has the potential to help others who may be wondering the same things.

this is such unprecedented, (I know, I know - everyone is sick of hearing those words - but it is true), times in health care.
our hospitals have been overwhelmed, and our health care professionals are being asked to do the impossible.

not sure where you are from, but here in Alberta, some cancer surgery has definitely been put on hold as there are simply NO OR times available. what a nightmare---for patients AND medical professionals.

who can decide which cancer surgery is not important? if I were asked of course NONE would be unnecessary. what a gut wrenching job that must be!

as cancer patients we all know that our anxiety started from the moment we heard the words: ‘you have cancer’.
each wait, no matter the length, is tortuous and hard on our mental health.

I had radiation therapy for a breast cancer and in my experience many months later, (up to a year), my breast was still changing due to that radiation.
perhaps the radiation you received will continue to make changes to your tumor as you wait the suggested 2 months???
smaller is better, I hope that this wait time will continue to shrink the mass.

I have done a quick look and found a few folks who have experienced head/neck treatments - if they are able, perhaps they can chime in.
@law1

@Jillie

@JamesT

let us know how things move along in your story.

cheers
su

#HPVcancer #PETscan #COVIDcancer #radiationtherapy #waitingistorture

law1
697 Posts

Welcome @dayone-- and I am sorry to read about your pesty cancer which refuses to go away!!! I too, had cancer of the tongue at its base, right tonsil with HPV causation.

I had 36 rounds of radiation, and refused chemo as I was too afraid of the reactions.

Fortunately, my PET scan 3 months after radiation ended, (3 yrs. ago) was thankfully NED--no evidence of disease. So, I can understand your concern about the small bump which is still evident. I cannot recommend treatment of course, but you may consider browsing Discussions on this site to find those which relate to such matters, or, begin a new discussion on this subject.

Your Medical Team will advise you, if not already having done so; Hang in there a bit longer and keep inquiring with your doctors to continue your search for eradicating the last bit of cancer in your neck area. This website is an enormous library of info and full of very educated and empathetic folks. I had the support of a marvelously sweet counsellor who helped me deal with the physical and emotional pain. She works at the Cancer Centre here in Victoria, so perhaps your cancer centre can make a counsellor available if you wish.

Jillie
27 Posts

@dayone I am sorry to hear you still show signs of cancer after all that treatment. I had HPV16 on my right tonsil and in two lympnodes. I was lucky they were able to do laparoscopic surgery in my mouth. I had 35 weeks of radiation and 3 rounds of chemo. When you go through that, you are such a mess and to find out you still have it is devastating. I would be the one to say do the surgery now. I don’t believe in waiting. Anxiety kicks in really bad for most of us and waiting can sometimes make things worse but if the say they can’t I guess you have to wait. I had breast cancer and it was nothing compared to this. Anything with the mouth is so much worse. You cant eat or drink. I had a feeding tube for 6 months. I wish You much luck with Whatever happens and hope not too long a wait period.

+ Reply