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treatment options

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I met with my onco (Dr G) today and he did a complete exam and took more tissue for his pathologist because UC had not yet sent the FNA slides to him (ARGH!).

My official diagnosis ("for now") is squamous cell carcinoma (scc) of unknown origin with multiple (3 or 4) lymph node metastasis (right jugular chain, above and below the swollen node). The reason the tumor "shrunk" is because of the aspiration from the 3rd biopsy (according to Dr G) although the pathologist (Dr L) who did the aspiration said she didn't know why it shrunk.

Ok, so Dr G (a surgeon) says the protocol he recommends neck dissection to remove the regional nodal basin, which is pretty aggressive. They want to take ALL the lymph glands as well as the salivary gland in my jaw, which I am told I will not miss. Indeed, the rads will probably kill the salivary glands anyway. He will also do random biopsies of the pharynx to try and find the primary. If they cannot find the primary (not uncommon) it is called an occult primary of unknown origin. the aggressiveness of the treatment is a bit of a bummer since getting the PET report (no primary, no distant metastasis).

That will be followed by radiation and chemo, fortunately I can have the rads done locally, only 7 miles from my home and only a mile from my work (I am a MFT Intern working at a free community clinic). I will probably have to stop seeing clients which is a bummer.

Does anyone have experience with this treatment protocol - neck dissection and aftereffects/issues?

Lastly from Tricia, Dr G agreed about the sugar but slightly disagreed about oxygen/pH. he feels sugar definitely has an impact on malignancy growth. He disagreed that cancers cells don't like oxygen so I need to go back and review my source for that. He feels that the body will regulate pH just fine, but making sure of a balanced diet is the best way to avoid disease.

Thanks to all for your attention and care.

Warmly,

Mick

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Hi Mick

Your plan of attack seems on target. The neck Disection first I think removes the path for metastasis and empirical data has shown that in 25% of cases some disease remains in the lymph nodes after radiation unless a neck disection is done. I had one about 3 weeks ago. There are appx. a dozen different variations of neck disections and if possible you want to preserve the jugular and nerves on that side. You can watch one on U-Tube. Mine was a selective disection and did just that. The surgeon just moved my nerve that controls movement to my right arm. I still feel pain here and this arm is much weaker than it ever has been. I do daily exercises to gain mobility and the ability to raise it above my head which I can do. If they cut that nerve chances are you will lose the ability to raise that arm above your head for the rest of your life. No more throwing baseballs to kids. Next week I start thearapy for lymphedema which right now is very bad for me. My chin or whatever side I sleep on gets full of lymph fluid during the night because the mouth is still draining but now has nowhere to drain since your pathway has been removed. Folks report this gets better over time.

"You won't miss the salivary gland" is an outright misrepresentation from someone who has never had their saliva diminished. After my radiation I have about 50% of what I used to. Eating is very slow and always accompanied by water to help in swallowing. Sleeping is difficult because your mouth drys out during the night and you need to get humidity in there. So you drink lots of water. Then you get up to pee all the damn time. Then you drink more water. You get the picture. Long term your teeth need saliva to stay healthy. They need to be bathed constantly in saliva to avoid cavities. You will have problems with your teeth.Radiation will weaken your Jaw bone so that getting a dentist to work on them is a quest. I would lobby for preservation of this gland if possible or at least want to know the probability of cancer spreading there.

Is it better to be alive, you bet it is! You are going to have side effects from the disection. You may lose mobility and range of motion in one arm. Lymphedema will be a royal PITA. Losing all your saliva Glands would be tragic and make life very difficult for you.

Make sure that the place you are doing radiation is at the minimum using an IMRT radiation machine which can be targeted more precisely and cause less damage. I say this because you mention that treatment will be done away from your primary hospital.

Try to Lobby for preservation of your major nerves on that side of the neck and Jugular with a selective neck disection. Make damn sure those saliva glands have to come out! Not pleasant but you have a plan of attack and are on your way to ridding yourself of this horrible disease.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Mick- ratface is correct about the salivary business. It's the one major thing I didn't advise you about with my posting last night on your other thread. The complications by having your saliva altered is tolerable, but you will miss them. My saliva is like a thick white foam, and dry mouth is constant. I use Biotene, along with frequent water. I did not have a dissection, and cranial nerve damage seems to have healed on it's own. I honestly, now, wish I had been more involved in getting info ahead of time from the Drs., as I just went with what they said had to be done to me, and the two neck tumors were rather large, and growing. So- yes, you will definitely miss the saliva function, and I agree with ratface.

I did have a root canal done on the problem/left side a couple months after the rads ended. Rad Dr. hit the roof with my Dentist- said he should have seen the problem before treatment. Was in the chair to get the tooth pulled, when the Oral Surgeon called Rad, who said I could not get it pulled. Had the RC a week later, and it went well.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

They are talking about removing all nodes and the single saliva gland in my chin. After a somewhat sleepless night I have these thoughts (so far:-).

Firstly, the removal of the nodal basin will also remove the "early warning system" of recurrence, will it not? Indeed, the reason I went to my primary Dr was because of a lump, not a sore throat. If the biggest challenge to SSC is local recurrence, why remove this effective alarm system?

Secondly, if IMRT and chemo will effective kill SSC, how more effective is dissection in terms of overall survival rates? What is the empirical evidence to support the decision? I can see this as a huge issue for HMOs - the most aggressive approach is likely the most cost effective in the long run. How much does that influence decision making?

I am not saying I do not want a neck dissection. This thinking comes directly from the experience of finding the tumor, not fear of the procedure. If I lose the alarm bell, how will I know there's a fire?

Thoughts?

Warmly,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

-about the warning sign thing. My warning(s) were when two tumors developed on the left side of my neck.

As for the dissection being necessary- I was the one who brought-up the subject of surgery with my Oto. He said he could remove the tumors, but said the chemo and rad should be able to take care of them, and because of my unknown primary- was gonna have to go thru full treatment, anyway. Bottom-line: I got the impression from him that surgery would just add to the costs, and for me was not necessary. The upper tumor was at my lymph, and the lower was next to my thyroid. My Oto is directly tied to the U of Iowa, which claims to be the second-best for head and neck in America. Not sure they are, but that's what I've heard. And I know for a fact they are into all the major h&n 14-15 hour surgeries, because of what was done, there, to a co-worker's stepfather.

Just seems to me you should get it explained by the Oto and Onco as to why the combo of chemo and rad won't be able to take care of it, as your research is telling you it might.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Kent. Thanks for that and sorry my post wasn't clearer. The reason I went to the Dr was because my lymph gland was swollen, which I am attributing to the fact that the lymph more or less contained the cells draining from the oropharynx. If they remove the lymph glands, all of them, where will the cells drain to if there's a recurrence? If they remove all the glands don't they also remove one of the ways we have of detection. That is the essence of my thinking.

The reason my surgeon (is that what you mean by Oto?) wants to take the glands is to reduce the chance of later metastasis or local recurrence. He did say the rads would "melt the tumors away" but surgery would remove them completely AND they'd radiate anyway. This is an aggressive approach. Is it too aggressive? Can treatments for cancer be too aggressive?

The literature I'm reading supports the surgery then radiochemotherapy (rct) approach as the standard. The prospect of the side-effects of radiation PLUS the side-effects of surgery are daunting. I'm a guitar player and a singer. I could lose my voice and movement of my arm!

Would I trade them for more time with my kids? Absolutely. Yet I want to run this to ground. This illness is rare in the US, but endemic in southern Asia. Some research there suggests no overall survival difference between surgery or no surgery. I'm not sure what to do.

I meet with the tumor board on the 11th and then we'll decide what to do. If I do the surgery I need 6 weeks recovery before rct. That would be 3 months after diagnosis! Do I bail on the surgery and get the rct now or do the surgery, get rid of teh thing, then worry about metastasis?

Thoughts?

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Oto= Otolaryngologist/ENT Dr.

Cannot advise you on the aggressive. Only know what I went thru. Thing is, my treatment appears to be different than others for head and neck: two 4-days carrying Cisplatin and Flourouracil pumps, weeks #1 and #4, while getting full head and neck rads of 20 places/session. Contents on the bags read "6,880 mgs Cisplatin," and "125 mgs Flourouracil," which is so far over the top that it defies all logic. I may have been part of an experimental treatment. I don't know, yet, but plan on asking about with my next Onco visit on the 25th of Jan. If I was part of an experimental, and you are not- perhaps this explains the dissection business I did not go thru. Of note: it was my Oto who handed me over to a separate Onco, without surgery in play, as if he/Oto was the one who prescribed my treatment's specifics by my Onco and Rad. And, my Oto is part of the U of Iowa network, which claims to be the second-best in America for head and neck, and may be cutting-edge, and which may include experimental treatments. I'll find out more about my treatment on 1/25.

On my first Onco office visit, Mick, I was told I'd be on morphine, which I was for weeks 2 and 3, and 5 and 6. She knew where this would take me. I was given no option- had to have the Port and feeding tube installed before any treatment. Have you been told the same? I was told this by Onco at a time when all that was known was: positive NPC, with two left-side neck tumors, and the treatment they had planned.

I would suggest that you confront your Drs. with what you know of the treatment I have undergone, and for them to explain just exactly why they want to remove what they do, rather than take the route that was given to me.

Please keep me and Hondo, and ratface, informed with all news about you.

Believe.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Here's my Dr's response (he's very good about email):

"The biggest challenge in Stage 4 squamous cell carcinoma is distant metastasis. We actually have good regional control rates when the nodes are not extremely large, there is no extranodal spread, and no vascular invasion.

"As we discussed, using surgery up front would remove all your gross disease and allow for lower doses of radiation therapy. This will help to some degree in keeping the side effects down. I have found this to be beneficial in the patients I have treated. Squamous cell carcinoma of unknown primary is rare so, good data is limited. Anecdotal information from myself and my colleagues around the country support the treatment plan I proposed to you."

So there it is. It is rare, ood data limited, so we'll take everything and hope for the best. Does it sound that way to you?

Warmly,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

The side effects are not good, so this may be a good path to take, with lower doses of rad. Thing is, the worst of times for me was at the end of the chemo (weeks #2 and #5-6), and my recovery happened while I was getting only the rads. The rad, alone, was not the major problem with side effects that the combo of rad&chemo were. To me, Mick, the issue of the rads is minor, compared to the combo with chemo. But maybe that's just me. Could be your Onco is correct. And, again, maybe I am part of an experimental. Would not wish what I went thru on the worst of my enemies, if I had any. The "good data is limited" would seem to be your Dr.'s ultimate justification, but he may be correct. Again, I would throw what I've told you about my treatment past him, and maybe he'll consider it. Then, again, what I experienced got very ugly, as I know all treatments do, but maybe his path will work and be less ugly.

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Mick,

I understand this must all present a dilemma and lots of uncertainty. I am very confused why they can't identify the 'Primary' in your case. Perhaps the Nodes are the primaries ????

I was treated in HK by one of the leading teams in HK where they do get lots of NPC cases as you mention. My Doctors seemed to work 7 days a week and are online via Email. If you and / or your Doctor would consider contact with them, I can supply the contacts and you guys can take it from there. I am unsure if they would take on this as a second opinion type of deal or how you would work the billing but just a thought. I assume they could email the PET CT results and your blood work. I can also make contact to see if and how they would handle such a case.

Of note, I made contact with a well know Oncologist in Australia 'after' I had commence treatment to seek some advice and a 'late' second opinion to make sure I was on the correct path, and he flatly refused to review my case unless I came to see him and became his patient. As I was in the middle of treatment and in in no shape to travel i didn't take any further action. From these forum pages, I have since gleaned that I was treated with the latest and preferred regimes of treatment.

From what you (and your Doctor) have said, they intend to treat yours in an aggressive manner. Your concern is "is that too much" or "do I need to be hit with the full monty? " Good questions indeed. I wish I had an answer for you.

As the guys stated earlier regarding what you will go through, they tend to understate the side effects but that may be the way you need to go to eradicate that ***** of a disease. Personally I would be looking a a full Second opinion or perhaps a another full PET CT Scan.

I am unaware of the costs and your insurance etc so don't know if the above suggestions are an option. Which ever way - the sooner the better re: getting a second opinion or starting treatment.

Regarding the second opinion, probably the most famous of recent stories of this was Lance Armstrong's case. A very motivating story of a fight against Cancer. In brief, his first team intended a very aggressive approach as an 'only option'. He also found the Oncologist to be quite arrogant and his way was the 'only way'. He sought a second opinion at another leading hospital Cancer Center and ended up there with a different treatment plan which worked for him.

My thoughts are with you and I hope you find the best path forward. You can beat this so keep focused on that. I have two tiny kids to live for so I understand where you are.

Best Regards
Scambuster.

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Hi Mick

Your Doctor in MY personal Opinion is echoing much of what I uncovered in my research when faced with same decision. http://www.cancernetwork.com/display/article/10165/91518?pageNumber=1

Follow this link to a very informative and definitive discussion of neck disections. I'm sorry I don't know how to get them to turn blue. There is also a very good thread on the Oral Cancer Forumn which I started this year prior to my disection and was taken up by an academia type faced with the same decision and this guy really did an outstanding job reserching disections. The thread is located in the forumn section of the site, do a search for pros and cons of disection which is how I started it.

Part of the reason for your Dr's recommendation is your occult primary which is a stronger argument for neck disections. This probably stems from the fact that they don't know what level the lymph spread can be because it is diferrent for different priimaries. The article explains much of this. So depending on where your cancer started they know where it is most likely to travel based on past experience and this what your doctor wants to target. In your case the target is wider because of the occult. You stated earlier that a doctor told you it may have started at the BOT? If so it usually, 70% of the time starts in the right tonsil.

I'm three weeks past a neck disection and just got done working out with 3LB weights above my head. If the nerves are preserved you don't lose mobility. I just wanted you in my earlier post to be aware of the possibility depending on type of disection. I say this because most doctors I encountered don't really know that you play the guitar, they just assume it's better to be alive and don't mention the possible side effects. Your voice is going to take a hit though just because of the radiation, mine has changed and I don't know how long the froggy sound remains or if it comes back, perhaps someone else has progressed this far and can comment?

The disection closes the door on spread as your doctor stated. It can be done now or after radiation. Some are in the camp of wait and see after RAD and chemo. Mine was after treatment but your case is DIFFERENT because of the Occult. Tell your doctor you play the guitar and explore the differrnt levels of selective disections if possible????????? When you say he wants to take the whole nodal plane how many nodes are they predicting? You have around 700 nodes in your body. I've known people who have 80-100 removed just in the neck area. I had 9 removed. Nodes are usally removed in sleeves like your shirt. They are like strings of christmas lights and Doctors like to take the entire strings. Is this what your doctor means when he says entire plane? A selective disection is not a bad procedure, I went in at 6:am and was home the same day around 9:pm. The incision was completely healed in two weeks.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi ratface. I am being told I'll be in the hospital for 2-3 days of recovery, so this is going to be a radical dissection. The Dr wants to take the "nodal basin" as well as one salivary gland, possibly because he thinks the primary may have started there - I've asked him that question.

I did tell him I played guitar and sing so that's in the mix. Hopefully there will be minimal cutting to avoid any major problems. He did say "We actually have good regional control rates when the nodes are not extremely large, there is no extranodal spread, and no vascular invasion."

I have access to all the same databases and reports he does through my job at college, so I have tons of reports on what is going on. What he's suggesting is not always done because in my case (occult tumor) there is no standard of treatment between facilities and a lot of what happens is anecdotal as he notes "As we discussed, using surgery up front would remove all your gross disease and allow for lower doses of radiation therapy. This will help to some degree in keeping the side effects down. I have found this to be beneficial in the patients I have treated. Squamous cell carcinoma of unknown primary is rare so, good data is limited. Anecdotal information from myself and my colleagues around the country support the treatment plan I proposed to you."

So there it is. Hopefully all will go well and there are no micro-mets and they'll either find the primary or the rads will blast 'em all away for good.

Best,

Mick

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Mick, all I can say is sounds like a great Doctor, wish Mine Had been that good. Your On your way! The surgery will be the easiest part of your treatment, Get spoiled while in that hospital and take advantage of being pampered!!

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Mick

Vol 18 No. 2 from the SPOHNC monthly news letter is titled:

Metastatic Cancer to the neck from an Unknown primary source

It addresses patient evaluation, exam, treatment, Diagnosis, prognosis, and a summary

Interestingly enough the unknown primary has a better prognosis than the known primary. It dosen't state why.

Suuport for people with oral and head and neck cancer (SPOHNC)
1-800-377-0928
www.spohnc.org

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thanks ratface for that link. I have visited that site, but have been reading a lot of scientific papers I am getting from the school library system (a great resource). I will check that out. BTW I started a new thread about my surgery - a week from tomorrow!

Warmly,

Mick

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