Intro and radiation time

aidensdad

Hi all.

I'm a 47 yo male. I was diagnosed in early August via a FNA of a left 4.6cm node which revealed SCC (p16+).

No visual of the primary was found via several (awake) scoping attempts.  PET and MRI seem to indicate a small-ish primary on the left tonsil, but everyone across multiple teams at multiple hospitals had different opinions.  Some saying it's clearly on the left tonsil and others saying they don't believe so. It's hard to make an educated, informed decision about treatment when there is so much variety of opinion. 

After far too much research on the interwebs and reading of peer-reviewed papers on every possible related subject, and with some careful consultation with many docs at Stanford and UCSF, I decided a laryngoscopy and tonsillectomy (left only) was the biggest bang for the buck at the moment - aim for the likely primary and extract it.  Tonsillectomies are very common and I snore anyway, so if nothing else my wife will be happy afterwards.

I'm T+6 days out now from surgery (Laryngoscopy, tonsillectomy (left only)) and no word yet from pathology.  But my wife confirms that I no longer snore.  Yay!

Assuming I get clear margins on a found primary on the tonsil, there's just the node(s) to deal with and I'm looking at more surgery and/or radition as far as I know right now.

This whole decision process has been confusing for many reasons - as you all know - but the way tumors and "cancer" are measured (visually, PET, MRI) in order to make treatment decisions confuses me further.  My understanding of radiation (and chemo) is that it's both targeted to known tumors and a "clear up everything we can't see" treatment, but then I see things like:

• "Scans and scopes show I'm cancer-free so no more treatment!"
• "After radition, all my tumors disappeared and treatment is done"

How can one claim "tumor free" when the modalities used to measure tumors only have very low resolution and/or cannot detect the microscopic bad guys?  I can't even get straight answer from the docs on this one.  

Not surprisingly, but disappointingly, the surgeons wanted to cut and the radiation oncs wanted to radiate, each claiming theirs was the better treatment plan and the radiation onc actually citing 5% general anesthesia risks to make her point!  This does not give me loads of faith in my "team".  At the end of the day, people (and doctors are people too) just want to do good work, high five and go home.  It's rare to find a doc or a team that aggressively works with you on a wholistic treatment plan that puts you first considering all of the outcomes and modalities.

My hope is to find clear margins on the tonsil and do a partial neck dissection to clear the bad nodes and skip radiation.  I know radiation results can be different for different people, but for a ~90% efficacy treatment with so much potential for disasterous short-term, permanent and 10-15 years out surprises, I just can't see the need unless there's a very specific something we're aiming it at.

I'm wondering if anyone else has shared this particular journey or something close to it?  

Great reading all of your stories and to find such a helpful community!

D

CivilMatt

welcome

aidensdad,

Welcome to the H&N forum, sorry that you are here, but you are just one of many novice researchers here.

Your problem is you selected doctors which are people too, you want super people doctors.

You sound like you researched yourself into some good choices and are keeping the big guns in reserve.

Many of us go the well-worn path of surgery, rads and chemo or a combination of these.  It has worked for many and to be counted with the many is sometimes a good thing.

This could be called the H&N decision forum since most of us have been in your shoes.  Regardless of your selection your cancer days are numbered and once you get your doctors inline you will be on your way.

Good luck,

Matt

behindthepen

welcome, I guess?  I have a

welcome, I guess?  I have a fairly similar story on the other coast, I'm at Mass General. I had a small tumor removed from my tongue almost 4 weeks ago (which didn't show up on the PET scan either).  But my surgeon was very conservative with the surgery, and was pushing me towards radonc from the beginning.  My guess is many doctors avoid neck dissections because those also have long term side effects -- but who knows, maybe it's because they make a lot more money on the radonc and chemo.  But it does seem to be confirmed with all of the research I've read.

Anyway, I start radonc in 16 days, and finish in 70.

CivilMatt

both coasts and overseas

Behindthepen,

Many of the H&N members have neck dissection, tongue, mouth and  throat surgery.  I had a jugular vein dissection to remove a tangled up lymph node along with base of tongue work.  I was given the choice of all or none.  I went with what I hoped would work.  I did not study the problem too much, I just wanted it gone.

If you read enough threads you will find that many strategies work.  Good luck with yours.

Matt

HelenBack

Yep, you get it

The only way to diagnose cancer "for sure" is tissue biopsy and patholgy. Scans are open to much interpretation. It's totally imperfect and frustrating. It's true that when people say they are NED, it just means that as far as they know there is NO EVIDENCE of DISEASE, not that they for sure, don't have cancer. 

But the docs know what to look for and what would be a likely progression of disease. Most recurrences happen within the first two years, if they happen, and usually present as a visible tumor, or so I'm told. My husband loves to be scoped as his radonc has always told him that she would be the first to know if he had a recurrence, visually. PET scans are used to look for distant METS, but has many terrifying false positives. FWIW, my husband never had a post-treatment PET scan as I think is becomming the norm.

You may be right that the docs aren't looking at you wholistically but I think it's probably just a matter of it 'all works quite well'. Like you, I was all over the place looking for the exact right protocol but I know now that many different (but similar) treatments still seem to work. They biopsy and scan as best as they can (and maybe remove tumor and/or lymph nodes) so they can really target the areas. The more info--the more targeted. That's why they want to find the primary, so they can target better. Many people are sucessfully treated with unknown primaries though, but I think they get a little more rads. Don't quote me on that though--all the info I absorbed three years ago might be a bit fuzzy. 

My husband had his tumor removed with clean margins, had 44 lymph nodes removed, 4 were positive (one with extacapsular spread) but didn't hesitate to do the recommended chemo/radiation. Outcome would probably be the same if he didn't do surgery first. It was no pinic but he made it through and is really back to normal in every way except his thyroid stopped working, so he takes meds for that.

We live in Berkeley, BTW, and he was treated at both Stanford and UCSF. Where are you located? And I'm curious to know if you met with or are being treated by any of the same docs? Sirjani at Stanford,  Sue Yom at UCSF.

Helen

 

 

 

 

 

aidensdad

HelenBack said:

Yep, you get it

The only way to diagnose cancer "for sure" is tissue biopsy and patholgy. Scans are open to much interpretation. It's totally imperfect and frustrating. It's true that when people say they are NED, it just means that as far as they know there is NO EVIDENCE of DISEASE, not that they for sure, don't have cancer. 

But the docs know what to look for and what would be a likely progression of disease. Most recurrences happen within the first two years, if they happen, and usually present as a visible tumor, or so I'm told. My husband loves to be scoped as his radonc has always told him that she would be the first to know if he had a recurrence, visually. PET scans are used to look for distant METS, but has many terrifying false positives. FWIW, my husband never had a post-treatment PET scan as I think is becomming the norm.

You may be right that the docs aren't looking at you wholistically but I think it's probably just a matter of it 'all works quite well'. Like you, I was all over the place looking for the exact right protocol but I know now that many different (but similar) treatments still seem to work. They biopsy and scan as best as they can (and maybe remove tumor and/or lymph nodes) so they can really target the areas. The more info--the more targeted. That's why they want to find the primary, so they can target better. Many people are sucessfully treated with unknown primaries though, but I think they get a little more rads. Don't quote me on that though--all the info I absorbed three years ago might be a bit fuzzy. 

My husband had his tumor removed with clean margins, had 44 lymph nodes removed, 4 were positive (one with extacapsular spread) but didn't hesitate to do the recommended chemo/radiation. Outcome would probably be the same if he didn't do surgery first. It was no pinic but he made it through and is really back to normal in every way except his thyroid stopped working, so he takes meds for that.

We live in Berkeley, BTW, and he was treated at both Stanford and UCSF. Where are you located? And I'm curious to know if you met with or are being treated by any of the same docs? Sirjani at Stanford,  Sue Yom at UCSF.

Helen

 

 

 

 

 

Thanks for the replies

Thanks for the replies everyone.

HelenBack, thanks for updating me on the NED definition.  It definitely can be interpreted differently.  

Radition then, in the pressence of NED doesn't seem like a great cost/benefit.  To me, anyway.  Especially when there's NED, because then you have to point that destructive beam everywhere and anywhere just to get any remnants that may or may not be there.  I get the idea, but given what I've learned about radiation, the cost/benefit just isn't there. I'm still on the fence, however.

HelenBack, how is your husband doing now?  Things that concern me with radiation: salivary glands, taste buds general vascular destruction and fibrosis (including carotid), long-term and permanent dysphagia, mucosis, strictures, additional stiffness / damage that appears 10-15 years out.

Dr. Ryan (UCSF) said he would personally avoid chemo.  Jeniffer Kizner (Stanford speech pathologist) said avoid radiation at all costs - she's seen the damage first hand for years out.  

I talked with Sue Yom too at UCSF.  I really liked her personally.  Great to talk to, but was heavily steering toward radonc.  It's hard for me to listen to people who have a vested interest (numbers, trial participants, etc) in a course of treatment recommend that course or treatment.  

What would be great at these institutions that instead of meeting with all of the treatment modalities is to be assigned a case worker who involves all treatment types who understands and advocates together with the patient, but I don't see that kind of role in the institutions I've met with so far.

Dr. Holsinger (Stanford) did my surgery last week.  Pathlogy just came back today with SCC-p16+ located ONLY in the vallecula.  No evidence on tonsil or 5 other bioposied sites.  I'm still waiting to hear if we got good margins on that one malignent section.

 

HelenBack

now that you mention it

I do remember thinking why radiate if all the known (verified by pathology) cancer was removed? It's true that radnocs want to radiate, surgeons want to cut and medoncs want to infuse. So maybe use that to your advantage when seeking opinions from doctors-ask the surgeon if he thinks you should radiate? That's pretty much how it went for us. The Stanford surgeon really hoped that if he could remove the tumor with good margins, my husband wouldn't need radiation since my husband didn't have a noticeably involed lymph node but he had a neck dissection which proved that it was in several lymph nodes. That fact made even the anti-radiation surgeon recommend radiation. One study I read (I can find the link for you) concluded that chemo (while still recommending radiation) isn't necessary with hpv+ cancer, unless there is extracapsular spread found in the nodes, and my husband's had extracapsular spread. So he got the chemo too. Of course the only way to know that is to have the nodes removed. And of course, many, if not most people just get the standard chemo/radiation without surgery , therfore not knowing the exact stage of their cancer. I assume it's because it's so likely they'll need chemorads anyway, so they might as well just get started so the cancer has less time to advance. And that's a good decision too. 

You say there's no cost/benefit but that's not quite true. It's so great that hpv associated cancer is quite curable, but that is specifically because it's really sensitive to radiation. The benefit is that you get cured and get to watch your kids grow up. I don't mean to be a downer but this cancer is no joke. People do die from it. So, obiously I'm on the side of getting radiation. That's just my opinion. The chemo is added often because it somehow sensitizes the cells to the radiation, helping the radiation do it's job (at least that's how it was explained to me.) So if you don't have chemo, it's an easier ride, for sure.

My husband is doing great. He was basically back to normal witin a month or so. No kidding. I know he was very lucky, and we did work really hard to manage his side effects. His thyroid took a hit though and he's on meds. I don't know if he will one day have long-term issues but he's fine three years out. Saliva, taste, energy, teeth all normal. 

Helen