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Metastatic SCC just removed, now in waiting mode, quaking in fear.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

I had a lymph node removed from my upper right neck on January 20th. I learned on the 27th that it was a "metastatic poorly differentiated squamous cell carcinoma." I've been scoped three times, and my ENT Doc still doesn't have any idea where the primary tumor is located. I admit that I am beginning to lose faith in him, as things seem to be moving forward way to slowly for my comfort. He got the biopsy results back on the 21st, saw me twice in the interim, and didn't tell me. He did not ask his staff to schedule a PET CT scan until the evening of the 27th, and on the 28th we learned that it may take up to 5 working days to get permission from my insurance company. And, he will schedule the next appointment to see me some time after that scan is done. Why was he not asking for this on the 21st? He admitted being puzzled about the fact that it was a head/neck SCC and I was a non-smoker. Hey, he's the doctor. Took me just about 15 minutes on this site to get a pretty clear idea about the significance of HPV in my diagnosis, treatment and prognosis. My husband and I both have a history of HPV infection and treatment. I consulted with my own GP, who had to hunt down the biopsy even though it was supposed to be sent to him. He was the one who told me about losing my teeth and the feeding port. Yuck. I'm chasing after an integrative medicine, nutritional specialist who is not accepting new patients, but my GP promised to get me in. I contacted my own dentist, who does twice-yearly oral cancer screenings with my checkups, and scheduled another screening for first thing tomorrow. We'll be discussing the tooth loss issue. I'm putting things in motion at work for FMLA and disability leave. I even sent an email to my ENT late last night, telling him to have my excised tumor tested for the presence of HPV. No reply yet. It seems like everybody has been falling all over themselves to get this thing moving, except my ENT. Or, is this just one of those time dilation things, where I am moving so fast that it only seems like everyone around me is going in slow motion? It is worrisome that I had to put this together all by myself. Is this the way it's supposed to go?

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

What's happening to you is like reading what happened to me. It took about three weeks from diagnosis (poorly differentiated SCC, unknown primary, mets in jugular lymph chain, HPV+) to surgery (removed 50 lymph glands, 7 had cancer in regions 2 & 3). Then 4-6 WEEKS before treatment (mid- to late February, radiation and chemo)! Because I had more than 1 lymph gland with cancer I am stage IV by definition. If you had only 1, then you are stage II or III. Have you been staged yet?

That 3 weeks before surgery were the most panicked days of my life. What I wish I had done was advocate for myself more by *insisting* from whoever (Dr, insurance, etc.) that I be given information and treatment. Whenever I got information, good OR bad, it always calmed me down. Since surgery I have been much calmer and preparing for what's coming next.

Good for you about chasing the integrative approach and the nutritionist. I'd also suggest picking up the book AntiCancer. It is a great general guide to a nutritional modality. Make sure and share all you do nutritionally with your rad and chemo Drs.

No source for information has been better nor more supportive that this site. Please post your questions here. We will help hold you through this and YOU WILL SURVIVE THIS!

Best,

Mick

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Thanks for the response, Mick. So far, they've only removed the one metastatic tumor. It was pretty obvious, as it was over 3 cm diameter. (At the time, they were assuming it was inflammatory and benign. Surprise!) As far as I can tell, no other huge lumps, but that does not preclude additional involved lymph nodes. I guess that's the purpose of the PET CT scan. So, no, I haven't been staged yet, as we have no idea what else is involved. When I asked, the ENT doc said that staging was, in part, based on the primary tumor. Which, apparently, might not ever be found. So, they never found your primary? And, did you choose the option of having all lymph nodes removed, or was it the only choice? My ENT doc said that it was an option, and that he had done such surgeries, but they were very invasive, and other options were proving to have similar long-term survival rates. I had massive swelling associated with removal of the one biggie, so I have would have concerns about having them all taken out. (I'd probably need a trach to breathe.) Why the long wait between surgery and treatment? Was this to allow you to recover? Do you still have a neck? Do you have teeth? (Sorry, couldn't help myself, my GP was the one who baldly stated that they would all go away. Previously, I hadn't heard that.) I'm so excited. Not.

Deb

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

Hi Deb. It is interesting. Our symptoms are so similar yet we are treated so differently. I had a smallish lump back in March that my primary care practitioner (PCP) said was "just a swollen gland". He gave me antibiotics and said to "watch it". By the time October rolled around it was bigger (3cm) and it had a couple of buddies (1 cm each). They needed to do the biopsy back in April, but part of that os on me for not advocating for myself. The other part is on the PCP who was not curious enough. I now have a new PCP.

I finally had a biopsy in November that was botched due to a sampling error. Then a second a week later with a larger needle which was also botched due to a sampling error. By that time it was December (9 month since finding the lump). On Dec 18th I was sent to UCSF and a pathologist there did an FNA (fine needle aspiration) and confirmed SCC and her "impression" was that it was NPC (nasopharyngeal carcinoma). Subsequently I had a 4th biopsy (no local anesthesia!) which confirmed the UC report. I had cancer. It was New Year's Eve.

My primary is "occult", meaning it has not been found even though I had MRI, PET/CT, and about a dozen scopes. I am told that my body got rid of it, but not before it metastasized into the right jugular lymph chain.

I went with my Drs suggestion of removing all the nodes in the jugular chain because what we have tends to follow this route unless there is extracapsular extension (cancer outside of the lymph capsule). Out of the 7 that were diseased, I had a couple of nodes with focal extracapsular extension (microscopic). The diseased nodes were in regions 2 & 3 (1 is closest to brain, 5 is closest to lungs). Why they took them all was to remove the gross disease and determine extent of the spread. I think it was the right thing to do. I have had no major swelling (2+ weeks since surgery) and very little pain.

They want my surgery to heal before undergoing radiation, that's why the wait. I still have a neck because there was no adhesion of the nodes to any structure, a very good thing. All my major muscles and nerves were spared and I've maintained full range of motion. I'm numb in a broad area from the bottom of my ear to my chest, but I'm told that "most of it will come back". I remain skeptical on that.

I have a dental appointment next week but my Rad Onco thinks I wont lose any teeth, so this is just due diligence on his part. BUT there have been surprises all down the line with this so I remain skeptical until I see the Dentist.

I will likely get a PEG because there are so many on this board who have talked about the pain of radiation and the limits to taking in food and more importantly hydration. One of chemo's big risks is kidney damage due to dehydration. If I cannot even swallow water and have no PEG, I run the risk of kidney failure. Cancer is bad enough that I don't need to add to the struggle by thinking I'm tough enough to do without the PEG. I will endeavor NOT to use it but, if I need to, it will be there.

I hope all that helps.

Best,

Mick

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Deb,

I'm very sorry you are having to go through this, but you are at the right place to get support and information.

About a year ago, my right side neck lymph node began enlarging and eventually became a solid mass. A double biopsy showed that it had an excessive amount of lymphocytes. I had to postpone having it removed until Dec. 16th 2009. On Dec. 21st. I learned I had Squamous Cell Carcinoma. On Dec. 29th, I had a PET/CT scan and it didn't reveal a primary, I have been scoped several times since then and nothing has caught their eye as yet. On Dec. 30th they removed my tonsils and placed a PEG feeding tube. On Jan. 14th 2010, I had all my teeth removed by Oral Surgeons, in preparation of radiation (35 sessions) which starts this coming Wednesday, Feb. 3rd,. On Jan. 29th, I had a port placed.

The PET Scan apparently showed that it had not spread anywhere else. Being a Type 1 diabetic, I question as to whether the PET tests are more likely to give an inaccurate or false report, as controlling my blood sugar is an ongoing problem for the doctors at this time and the PET is all about sugar. I had my pancreas removed in 2001 from cancer which made me a diabetic.

Deb, I had the same feelings about what appeared as "ENT constipation", as everything seemed to go into slow motion....except me! I just wanted to point out to you that I had waited a year to get the ball rolling and then once I learned it was cancer I was the one in a big hurry. Have faith and you will get through this.

You are in my prayers Deb.
Mike

Mick,
I have not seen anyone explain how cancer stages are determined until this post by you.

I was never told what stage cancer I have. I had the solid mass lymph node with excessive lymphocytes and my tonsils came back clean. So I'm not sure what stage number I fall into.

Your friend
Mike

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

The ACS and NCI websites both have links to how scc is staged in h&n cancers, and I do not have the link on hand. However, these are just definitions not certainties in regards to prognosis. Stage IV is not good, but there are so many factors involved in how a person does that staging is at times irrelevant.

I hope you're doing well Mike with all the extra drama you have to live with. You are an inspiration.

Best,

Mick

Chefdaddy
Posts: 164
Joined: Dec 2009

Heh Mick,

Good to hear from you. Thanks for the website info, I'm a little web nieve for good informative cancer sites.

Mick, when I had my tonsils removed they also placed a PEG and after reading so many other's personal experiences, I'm very thankful that it was done.

I can tell by your posts that you keep a close eye on what goes on with your health and what goes in your body for nourishment. In your deciding as to whether you can go through the radiation without having a PEG and trying to guesstimate whether or not you can afford to lose a few pounds and still be close to your ideal weight seems like deep sea diving without a reserve tank. Very risky!

If you do not have a PEG, and you react poorly to the radiation and end up like so many others have, unable to eat or drink and you start dropping unanticipated weight, you may possibly bring on more severe conditions that you would be forced to deal with as well.

I would hate to see that happen to you my friend.

Just my own concerns for you.

Your friend,

Mike

Dazey
Posts: 86
Joined: Sep 2009

My story is very much like yours. One lymph node - two fine needle biopsies were negative, but the lymph node was removed and found to be mets SCC. ENT was less than helpful (see my info on this site). Had a PET scan which showed nothing light up except for where they had removed the node. I then went to Memorial Sloan Kettering for more biopsies - they checked the tongue, esophageal passages and anywhere else they could find. All negative. Treatment recommendation was for radiation. Dr. at Sloan assured me that this was "curable" not "Palliative" He spoke with me at great length about what he saw, found and recommended (unlike the ENT). I consulted with a Sloan radiation specialist who concurred and said it would be IMRT treatment. I was not able to do a daily commute to this doctor, but he personally spoke with a treatment center 45 minutes from my home and approved the treatment protocol. I am 14 weeks out from my last treatment and am doing very well. No PEG tube; I was able to consume food throughout - limited amounts (lost 40 unwanted pounds), but kept my nutrition up with Boost drinks laced with soy protein and yogurt. It is in the last 2 weeks that I see a tremendous, tremendous improvement - much less mucous, some dry mouth, can eat many more foods, more energy, etc.

My follow up CAT scan was "perfectly normal" and I expect to have a PET scan in April. I went back to my old ENT doctor to do follow up. He had removed my right tonsil about 15 years ago and it is his opinion that he had removed the primary then. Sloan and the treating rad oncologist both felt my body already destroyed the primary. I will continue to be monitored every 6 weeks for the first year.

Like you, the dx felt like being punched - no air, pacing around, truly a panic. Having an ENT who was less than helpful, truly contributed to that panic. The surgeon at Sloan said that a surgeon could have all the best surgical skills in the world, but if they cannot talk to the patient, they are useless. While it is critical to do a lot of research to gain the knowledge, it is also critical to have a medical team leader you trust and who will help you "direct traffic". You will hear many people tell you on this site that we are all different and all react to treatment differently. That is very, very true. I can only share my experience. I wish you well and remember that time so clearly; there are only good thoughts and energy being sent your way. This is an incredible journey that you are embarking on and fortunately, you have many supports on this site to help you on your way. By the way, I worked full time during treatment and drove myself to the cancer center daily

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

Do you know what the energy amount was on your rads? I'm getting between 50-60 grays. I have a decision to make about the PEG. Did you ever feel that you wish you had gotten it? I can't lose 40 lbs. I could lose 20 and be ok, but more than that I fall below my BMI. I'm 183 now and my *ideal* weight is 160. I may just get the PEG just in case, but I'd rather not.

Best,

Mick

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

This is a good question. I could lose 25 lbs and be at the bottom end of my BMI. I could lose 40, and match the weight I carried as a bike racer in grad school but I'm not convinced I want to go there. I am not, however, excited about the addition of any bodily orifices. I kind of like the way I am now... oops. I guess, in the new reality, I'm already different.

Dazey
Posts: 86
Joined: Sep 2009

I was shown the original "plan" - but do not remember the "grays" specifically because with the IMRT, each area received a specific amount. I do remember the section that showed they would not hit the spine. I did get thrush the second week, but the rad. oncologist immediately put me on diflucan and magic mouth wash which helped immensely. He told me then that he normally does not have a peg put in for just radiation (he was originally down at MD Anderson in Florida before coming up to this center).

I lost the weight due to not eating much and most came off during the 10 weeks after treatment - I always was able to get the Boost shakes down and various foods. Anything with an acidic base was torture, but things like oatmeal - Lipton chicken noodle soup,scrambled eggs and egg drop soup went down. It took a very long time to eat anything - very tiny bites that were very well chewed and a water chaser - but I was determined and I know others on the board did it also. I am now adding ground vitamins, glutamine and aloe to my shakes. I try to have at least one major shake/day plus foods each day (just to make sure I am getting good nutrition) and each day is getting better. I have even added turkey chili to my menu!

The important thing to remember is we are all different. If I thought that I would have to endure the pain that was caused by the thrush at week two, I would have insisted on a peg tube, but it was an infection that caused that. Any other pain, I was given the liquid oxycodone - .5 ml every three/fours hours as needed. Being who I am, I chose to take half that dose when needed (smallest amount needed to ease the pain, not obliterate me) It worked for me - no pain refill needed, only the one script filled the end of September. Now, I only have pain, later in the evening if I have had a strange texture - and sometimes whatever I am eating gets "caught" - but not enough to stop breathing - it does come up eventually.

I have no regrets about not having the peg This was my experience.

Warm thoughts and prayers are being sent - You can do this! Dazey

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

A PEG tube does not preclude the possibility of thrush, if that makes you feel any better, Dazey. I had a PEG tube in before I even woke from surgery. I still contracted thrush. The reason, or at least one of the reasons, is that we need to try to start eating as soon as we can. We therefore rely on the tube for most of our nutrition, at least in the earliest days, but we also try to start orally ingesting things, some of which you mention (I would add yogurt to any starter list, as it is rather easy to get down for most of us and has the added benefit of aiding our digestive system.)

For those posters who have been talking about their current weight versus their 'fighting weight' when thinking about the viability of a tube, I would caution that these factors are not the only ones and maybe not the most critical ones involved.

Losing weight because of cancer and cancer treatment is not like being on a diet. It may be that you can 'afford to lose 20 or 30 pounds', but can you afford to lose them because you have a sudden imbalance in your body caused by the inability to ingest the things that give you certain vitamins, certain essential nutrients?

As a result of my surgery and following chemo/rad therapy, I lost 75 pounds. I was not rotund and certainly not obese. Every time I went to see OncoMan, the first drama of the day was whether I was losing or gaining weight, and we were approaching, were right at the redline for stopping treatment.

Just something to consider.

Take care,

Joe

Dazey
Posts: 86
Joined: Sep 2009

Thanks for your feedback. At the time of occurrence, I had no knowledge about thrush and thought that the pain and sores were a result of the radiation. Thankfully, it was treatable with medication. If I had thought that I would be suffering with the pain and sores for all of the radiation treatment, I would have considered a PEG. It was not necessary because the thrush was treatable and the discomfort eased. I understand now about thrush, the symptoms and cause. I am 14 weeks out of treatment and doing very well, eating, not losing any additional weight and in over all, good shape. I must say thrush is terrible! Dazey

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Your experience sounds a lot worse than what I initially encountered and thankfully was able to avoid.
I live in a rural area with a hospital that serves a population of about 50,000. It's a good hospital for what it is, but I quickly learned that it wasn't going to be up to snuff when it came to putting my life in their hands.
When I had my tumor out, there was not a word about HPV. When I was told by the ENT that my chances were "maybe 50-50," I started researching tonsil cancer -- I'm a reporter, so research comes naturally to me -- and I quickly learned that Johns Hopkins is a leader in the treatment of head and neck cancers. It's about a 90-minute drive from where I live.
I saw a specialist there, and practically the first thing he asked me was whether my tumor was tested for HPV. I told him that no one had even mentioned that. He took the initiative, ordered tissue samples and told me it was HPV-positive and that my chances were much, much better than 50-50.
I opted to have my treatment there. My ENT, radiation doc and chemo doc all worked in harmony. When I suspected I was having some hearing loss from Cisplatin, they immediately sent me to an in-house audiologist. Sure, there were a few glitches, but by and large, I was always kept in the loop and all my docs were on the same page. If I had questions, they answered them. And I was fortunate enough that all three docs recognized that I'm an intelligent, well-educated guy who was entirely capable of grasping difficult concepts. They treated me like an adult, and I appreciated that.
The moral of this story?
Get yourself to a major cancer center, a teaching hospital or similar facility.
It's your life and your treatment. Take charge of it.

--Jim in Delaware

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

D Lewis- I agree with Jim, if even just to get a second opinion from a very major medical center. I was fortunate, in that my Oto/ENT has direct ties to the U of Iowa, and the greater-Quad Cities area is populated by over 300,000 people. C is very serious business, you know, and compromising on quality of care is not a good idea. And, I was treated at the Regional Cancer Center of the Quad Cities, which does participate in trials. Was Cisplatin and Flourouracil pumps for me, twice for 96 consecutive hours, and full head and neck rads in 20 places x 31 times.

As for your wait to get a Pet Scan- might be typical. Routine is= first a needle biopsy, then a surgical biopsy to get confirmation, and then the Pet Scan to see how wide-spread the C is. My Pet Scan was just about a month after I took my two tumors to my regular Dr., and he got the ball rolling. Then, with me, I had a second surgical biopsy in hopes of finding the Primary, which was not found. Then, maybe installation of the Port and PEG feeding tube- YOU MUST ASK YOUR DR. ABOUT THE NEED FOR A FEEDING TUBE!!! I, and many others, regard them as a CRITICAL NECESSITY. With what I was to go through, my Onco didn't give me the option- had to have one installed before she would go forward with treatment. And, believe me- I got no regrets for getting the PEG installed. I still have it and the Port.

I'm a 15-month Survivor, D Lewis, and weigh a couple pounds more, now, than I did five years ago! And I returned to work last May, a month after my last rad. Returned to work at the start of week #13. Week #1 was when treatment started- both chemo and rad. Week #2 was the onset of living on morph and ice, magic mouthwash and 4.0 formula thru my feeding tube. And that continued until late in week #6, after a four-day hospitalization. The morph ended at the end of week #6, but the feeding tube lasted until the end of week #8. And it was all bearable, though times do get tough. Your Drs. should prescribe for you all the help you will need to endure it, and you will. All of us on this forum are proof you can get thru this. We have, and so will you, D Lewis.

Believe.

kcass

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I know from my particualr case (also a non-tobacco user) that my ENT suspected HPV from day one. He removed my tonsils (primary three days later). I also had a lymphnode involved (secondary), but it wasn't removed. He staged me as stage III the same time he removed my tonsils. He also did a quick biopsy that night immediately after surgery and concluded it was indeed SCC. He sent the tissue samples out for HPV testing which took a good three weeks to come back as positive for HPV.

In my case there was no need for a needly biopsy to the tumor (lymphnode) as it was already determined I had cancer. They opted to not do a neck disection or remove the lymphnode at that time. Their logic becasue like you said it's a very invasive operation, was to prescribe nine weeks of chemo, then seven weeks of concurretn chemo and 35 rads... They felt if it reacted to the treatment well (which HPV derived cancer tends to) that there was a good possibility that the tumor would dissolve or at least shrink smaller and be less of an invasive operation, they were correct in their logic.

In my situation, the tumor completely dissolved an was no longer present after the second round of chemo. This was confirmed with a CT scan and later by the PETC scan. No signs of cancer remaining.

As for the PEG, I didn't have one and for me it worked out fine. I had no issues by not havong one. Maybe I was lucky, I don't know, but they didn't feel I needed one, and their diagnosis worked out correct for me.

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

This has been an excellent thread and great points by all. One critical factor here in the PEG np PEG discussion is that of known vs. unknown primaries. Known primaries have a smaller radiation target volume and therefore less gross irradiation than occult or unknown primaries. In my case (occult) they need to enlarge the target area because they don't know where it originated. That means my *entire mucosa* is going to be blasted. That likely means relatively more trouble/pain swallowing than a known primary treatment.

I especially liked Joe's response because it hits the nail on the head. Losing weight by design is a much different animal than losing weight because you can't eat. As I just responded in an email, for me this is about a swift recovery and that means staying hydrated and not losing a lot of weight. Without the PEG that is a tougher hill to climb. It has been done, as some here have testified to, but it is a tougher route. I plan on being tough, but I also do not want to be stupid.

I meet with the med onco tomorrow and have a gastro consult on the 12th. I'm leaning toward the PEG and will keep you posted.

Thanks to everyone for the contributions here and please keep them coming. This site in invaluable.

Best,

Mick

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