STGIII HPV+ SCC: anyone had only radiation?

lynxcat

i'm a 59-yo woman who found a lump in her throat 2 weeks ago, w/associated node. biopsies, scans, presentation to tumor board all done, and now i must decide whether to accept the whole recommended hog -- radiation, chemo, and then possible resection -- or to decline chemo. i'm reasonably savvy about medical matters. it looks like the increase in survival added by chemo for scc is negligible (perhaps 10% -- which means 90% of people who have chemo for this condition get no benefit from it) compared to the risks of complications and the morbidity associated w/ the treatment. anyone out there made this decision, or had a doctor recommend it? yes i know everyone is different. it sounds like rtx for the throat & neck is one hell of an ordeal on its own. also curious -- any women who have had radiation but not chemo, did you keep your scalp hair?

i'm sure as i go through this i will appreciate having found this site and the people on it. right now i'm still in the surreal phase.

lynx

Kent Cass

Rad Only
Yes, there are some who got rads but no chemo, but I think it's typical if such is the case they do have surgery w/removal of a significant amount. Sweet is one of those. We are all different, and your Drs who know the specs on your C are the best to advise.

As one who had both chemo and rads, I must advise that you consider it best to error on the side of the aggressive. This is C, lynx, and not getting it all and having it come back on you is a very bad thing, and options, then, usually involve radical surgery. For most SCC H&N, it is my understanding that the U of Iowa, recognized as one of the top-5 H&N centers in the USA, advises that both chemo and rads are mandatory. Do, personally, know of a man treated locally with only rads, and he lived to regret it in a major way- couple years later with a 14-hour Op at the U of Iowa that took his voice box and most of his tongue. H&N is nothing to toy around with, because success rates are among the best of all Cs, so long as the Drs do right by the patient in the first round of treatment. Yes, it can get a bit rough, but if it's contained to the H&N it should be winnable.

kcass

longtermsurvivor

an interesting take
on the percentages. I view those same numbers very differently. To me, the survival rate improves by 10%.

Best wishes for a successful outcome.

Pat

ballonk

Surgery and Radiation Only (No Chemo)
Hi Lynx: I'm a 60 year "young" woman who was first diagnosed with SCC on the left side of my tongue in 2001. I had surgery where a portion of my tongue was removed; followed by no radiation or chemo. I did have frequent checkups by my ENT but he only did physical exams after the 1st year. Two years after my 1st surgery (and 2 weeks after a checkup with my ENT), I woke up one morning with a very bad nosebleed and a big lump in the left side of my neck. The cancer had returned and I had a radical left neck dissection followed by 2 months of IMRT radiation, ending in December 2003. My doctors did not consider chemo as an option for my case. I lost very little hair during radiation (just some small patches in the back of my head at my neckline where the radiation exited my body). That hair grew back within a few months after I finished radiation.

As you stated, everyone is different so you can only make your decision for yourself armed with the best info you can get from your doctors. Yes, it's been an ordeal but considering the option, one I'm grateful to have survived. It's been 8 years since my last radiation treatment and overall, I've adapted quite nicely and I have a wonderful life. For which I am VERY grateful!

Sending prayers your way; good luck! KathyB

Skiffin16

Percentage
I'm not sure where you found that percentage statistic, but I'm skeptical about it. I'm not a MD, but I just don't buy that statistic based on my experience, the many that have had similar Dx on here, and comments from my MD's. For me, I'll take every extra percentage for chance of survival that I can get.

Like Kent, I'll opt for the more aggressive if it has a proven track record. In our case (I'm also STGIII SCC HPV+ Primary Tonsils with a secondary lymhnode), we went with a fairly aggressive approach.

I did have sixteen weeks of four different chemos, seven of which were concurrent with rads. I didn't have any surgery (dissection), other than removal of the tonsils.

That was January 2009, and to date all has been clean and clear.

Too be quite honest, the rads are the hardest part, and the most long term side effects anyways, chemo (for me) was a piece of cake comparatively...

The hair which I did lose from chemo grew back. The hair I lost from rads, didn't...

As for MD recommendations, my MD suggested that I didn't deviate from the tratment that I mentioned. Has he had patients that did and survive, yes, does he recommend not having the full monty, NO.

Anyways, it's always your thoughts and ultimate decision..

Welcome to this forum, you'll find many here with great backgrounds, experience and knowledge, always willing to share...and several Dx pretty much the same as yourself.

Best,
John

sweetblood22

Lynx
I was told that chemo would give me another 10%, as well. I was told neck dissection alone, 40% chance of return, adding rads knocked it down to 20%, and adding chemo, down to 10%. However, those numbers are for regular cancer patients. I have another complication. I decided to refuse chemo, because I have a very rare blood disorder where both radiation and chemo have an extremely high rate of morbidity during treatment and after. Fanconi Anemia patients Like 8 of 12 died according to the study. I had to get three opinions to decide what to do, and they were all split. I decided to do radiation only, for fear that chemo could irreparably damage my bone marrow/blood counts. If I was "healthy" and did not have what is surely likely a fatal blood disorder, I would have done both rads and chemo.

I had SCC stage 4, unknown primary, mets to lymph nodes. Had neck dissection with left salivary gland removed, with 23 lymph nodes, 3 were positive. Ended radiation 5/15/09.

I did lose the hair from the tops of my ears down. It grew back. The neck hair I did not want anyway, did not grow back. Now when I cut my hair pixie short, she doesn't have to shave my neck.

jtl

10%
I have also seen that figure used but I guess 10% is still better than zero. You could look at some of the newer biological treatments like Erbitux if you are concerned about short and long term side effects because it may be better in that regard.

Skiffin16

Unknown Primary Example
So what if you have an unknown primary, and they only treat with rads?

Radiation to me is very localized, and we all know that the PET and other scans do not catch the smallest of cancer cells.

Chemo would greatly increase the odds (percentage) of killing any free floating or non-detected cancer cells.

Or at least that's my logic, though that could be flawed.

Not discounting the power of positive thought...

JG

sweetblood22

Skiffin16 said:

Unknown Primary Example
So what if you have an unknown primary, and they only treat with rads?

Radiation to me is very localized, and we all know that the PET and other scans do not catch the smallest of cancer cells.

Chemo would greatly increase the odds (percentage) of killing any free floating or non-detected cancer cells.

Or at least that's my logic, though that could be flawed.

Not discounting the power of positive thought...

JG

Unknown Primary
That is true, John. Since I was rads only, there was a wider and harder hit radiation field with my RO taking his best educated guess mapping out where to zap. That might be one of the contributing factors to why my side effects were so rough.

Had to weigh the odds, and decide whether to risk possible death because of radiation and chemo, or death because I didn't radiate, and I got a recurrence, or..... It boiled down to talking to a lot of medical professionals, and a lot of prayer. What else can you do? But yes, rads is localized, while the chemo hopefully kills anything in your body, hopefully.

Skiffin16

sweetblood22 said:

Unknown Primary
That is true, John. Since I was rads only, there was a wider and harder hit radiation field with my RO taking his best educated guess mapping out where to zap. That might be one of the contributing factors to why my side effects were so rough.

Had to weigh the odds, and decide whether to risk possible death because of radiation and chemo, or death because I didn't radiate, and I got a recurrence, or..... It boiled down to talking to a lot of medical professionals, and a lot of prayer. What else can you do? But yes, rads is localized, while the chemo hopefully kills anything in your body, hopefully.

Your Case
Dawn, I know your case is more complicated, and you needed to do what was needed for survival.

I was more just speaking in general to the original poster topic.

I think we all would like to take the less invasive approach. But then again, we are dealing with cancer. To me it's not something that I'm willing to gamble with. I'd rather hit it hard and keep hitting it.

I know it's an individual choice for each of us and what we are willing to deal with.

There are no guarantees with any of this..when it comes down to it. We have all seen people that have survived with many treatment plans (traditional and alternative), some whose plans were to do nothing.

One of the wonders of us all being different I suppose, not taking the power of faith out of the equation.

Faith, Family and Friends along with a positive mental attitude, and just plain survival instincts go along way toward survival.

JG

sweetblood22

Skiffin16 said:

Your Case
Dawn, I know your case is more complicated, and you needed to do what was needed for survival.

I was more just speaking in general to the original poster topic.

I think we all would like to take the less invasive approach. But then again, we are dealing with cancer. To me it's not something that I'm willing to gamble with. I'd rather hit it hard and keep hitting it.

I know it's an individual choice for each of us and what we are willing to deal with.

There are no guarantees with any of this..when it comes down to it. We have all seen people that have survived with many treatment plans (traditional and alternative), some whose plans were to do nothing.

One of the wonders of us all being different I suppose, not taking the power of faith out of the equation.

Faith, Family and Friends along with a positive mental attitude, and just plain survival instincts go along way toward survival.

JG

If I did not have
If I did not have extenuating circumstances, I would have done the chemo.