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jalind's Message Board Messages

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On Jun 03, 2019 3:08 AM byrer wrote:

On Apr 08, 2011 4:24 AM jalind wrote:

On Mar 24, 2011 5:10 AM Georgenone wrote:

 

Is there any cancer patient out there who can really answer this Question?

Neck dissection is an exploratory procedure where Lymph Nodes are removed and examined to see if cancer has spread to the lymph system. Why is this done? If cancer has spread to the lymph nodes there is largely nothing they can do about it. They will tell you all they can do is watch to see where cancer may spread to next. Has anyone ever heard of any possible benefit from a neck dissection?

What could possibly make a neck dissection worth a guaranteed lifetime of pain and other problems?

I have read thousands of pages of information on neck dissection. What am I missing?

Neck dissection and a host of pathology reports failed to detect the cancer in my jaw. It was actively causing a horrible amount of pain both before and after surgery. Perhaps my point of view is too narrow to understand. What I see is they butchered my neck took out my tongue and larnyx but never touched or found the cancer causing the problem that prompted me to seek medical help.

So does anyone have some answers?

All lines of wisdom, witt or just plain *hit are welcome. After 3 and a half years of searching for an answer,  even a good laugh would be nice.

[Play ELO's "I'm Alive" in background while reading this.]

A neck dissection really should NOT be an exploratory procedure . . . not if PET/CT scans and FNA biopsies can be used to determine what is going on first so that the radical neck dissection can be planned properly! I can understand why there might be some circumstance that would preclude FNA biopsies, but even so, a CT or PET/CT should still be done beforehand.

For me, the radical neck dissection was done to remove some lymph nodes that were already KNOWN to be cancerous, plus a parotid gland they were on top of, and most of the rest of the string of nodes just to be sure we got it ALL.  As it turned out, that was a wise move as there were more nodes involved than we knew about.  For me, the overkill was a Good Thing.  Radical neck dissections are NOT simple, they take hours to perform, and there is risk of significant nerve damage with quite morbid consequences in the process.  You DO NOT want to have to go back in with a "do-over" to get more tissue, nodes and/or glands.

The side effects from nearly all neck dissections are nothing compared to the morbid side effects of head/neck radiotherapy, some of which continue appearing for months and years afterward.  For me, the question would be what made radiotherapy worth its side effects, some of which will be permanent (not the surgery)?  The answer: it's better than pushing up daisies, which I'd almost certainly be doing by now, or be in palliative care and hospice doing daisy pushup planning.

Your point of view is definately not too narrow too understand. I wish I knew what I know now. I would have definately went to a specialized cancer hospital instead of being shuffled to a local general surgery clinic. No scans were done beforehand. I have had the proceedure & 3 yrs. later I still have problems of inflammation, lymphodema & severe anemia. They do a blood test every 6 mo. My advice to anyone at this point is to always seek a second opinion.

Nine years later I'm still coping with the morbid effects of surgery and six weeks of head/neck radiation, and will be for the rest of my life. Some of them are a combination of the two as I'm missing 16 lymph nodes, and a parotid (salivation gland).

* Lymphedema - in my lower limbs of all places
* Xerostomia - not just the missign parotid but radiation effects on other salivation glands.
* Fibrosis - combination of surgery and radiation generating heavy scar tissue that starts to affect range of head motion if it's not exercised
* Hearing - consequential effect of radiation on the inner ear and fibrosis constricting the eusachian tube
* Hypothyroidism - thyroid called it quits about three years after radiation, an expected effect of head/neck radiation that doesn't present itself for 3-8 years.

Whatever those are, it's still better than the painful agony of late stage terminal cancer and looking at the dirt side of the sod, having watched my father's long ordeal with it. My best advice is to get yourself into good physical condition and weight, within the limits of other medical considerations. Physical conditioning takes time - many months - but the effects of becoming physically active are more immediate. It will help with the lymphedema by helping move lymph fluid. If you also had radiation, the blood tests should include TSH level to see if it's starting to go high - an indicator of the thyroid no longer functioning. The sedentary and obese have a much tougher time than the physically active that aren't carrying around excess weight.

Best wishes for you going forward.
John

Neglected to mention . . . I'm also a 5 year melanoma survivor, with that diagnosis occurring almost exactly 3 years after the H&N squamous cell carcinoma. It was also on my neck on the same side as the radical neck dissection which complicated the excision slightly but nothing we couldn't deal with.

Keep putting one foot in front of the other toward the ultimate goal and find something to celebrate every day, even if it's trivial or small. There is life after cancer and it can be a very good one.

Best wishes to both of you.

On Jun 07, 2018 2:00 AM justacountrygrl wrote:

Steph - Thank you for your comments here.  It is such a relief to know that after all the pain and suffering that my husband has endured the past few weeks with the radiation and chemo therapies, that there is a possibility of a positive outcome.  Other than the physical aspects of his reaction to the treatments, it has changed him so emotionally as well.  After today he has 3 more radiation treatments, and 1 chemotherapy left!  I'll tell his story when I know how his recovery goes.  I'm hoping the man I married juat a few months ago will come back to me when this is all done...   

Thanks again. b

I am with Susan (Sdurnell) on this. The thread started eight years ago, barely a month after I finished six weeks of radiotherapy after a radical neck dissection and Stage IV diagnosis. I won't candy-coat treatment morbidity. It's quite severe for head & neck squamous cell carcinoma's standard of care. It will take some time to recover from treatment once it ends. For me it was a couple of months or so as some of it's gradual. Everyone recovers from the short-term effects on their own timeline. The body is still reeling from it all for a while.

I don't know of anyone who isn't changed from what they were before cancer. It becomes a "new normal" both physically and psychologically. There will be permanent effects from treatment. I and all the other long-term head/neck cancer survivors I know are dealing with them. How severe each of them are depends on the patient, the radiation field, the surgery site, etc. The standard of care for treatment morbidity is well known and well understood. Like Susan, none of these have affected or limited what I do and I'm far removed from a sedentary lifestyle. I'm doing more now with greater physical demands requiring greater physical stamina than I did before the cancer diagnosis, having deliberately ramped up physical activity after treatment.

John

On Dec 29, 2016 10:48 PM JRToronto wrote:

I also set-up an account specifically to reply to this and maybe give people some hope. I am a 32 year  old female who was otherwise in good health. I had 36 radiations and 6 chemo for base of tongue cancer.  I had a feeding tube and lost my sense of taste completely.  I could not eat anything, not even water, for the last few weeks of treatment. I am now about 5 weeks post treatment and my taste is back to about 80 or 90%. Some things still taste bad or just different, but every day is an improvement.  My gtube came out a week ago, or 4 weeks post treatment. Everyone is vastly different so please don't panic that you will take months or years to recover. You may not.  

Anyone is free to contact me if they'd like. I'm more than happy to answer any questions about my experience. 

Glad you're improving from treatment effects. It will take a while. Chemo, depending on what it was, can also affect taste. The time needed for mine to substantially return wasn't far off from yours. How is your salivation? That usually takes a hit. How severe depends on the individual, and the specific radiation plan with its radiation field. Treating radiation induced xerostomia is well understood, usually with daily Salagen (Pilocarpine), but don't expect to get back to where you were. In conjunction with that, take very, very good care of your teeth to prevent the need for oral surgery of any kind. Keep track of your TSH with annual or semi-annual blood tests as one of the very common late effects is hypothyroidism that appears a few years after the radiation. There are other threads on the message board about various temporary and permanent treatment side effects, some of which emerge immediately during treatment and some of which emerge later, sometimes a number of years later (thyroid damage is one of them).

I'll be celebrating 7 years of H&N SCC, and 4 years of Melanoma survivorship in January. Best Wishes and have a great New Year!

John

RE: Squomous Cell Carcenoma

by jalind - November 14, 2015

On Nov 14, 2015 12:01 AM Panlinea wrote:

Hello all i was diagnosed last year April 2014 with HPV Squamous cell carcinoma in my left tonsil. wasnt sure how to start my own thread so have tagged it on to the end of this one. My treatmment consisted of neck disection 6 teeth pulled tumor removed by laser followed by 30 Radiothraphy sessions. And about a year ago was told that i was clear. Two weeks ago i started experiencing symptons such as sore throat, ear ache, pain in my Jaw shrp pains shooting up into my head causing headaches tender gland etc. I telephoned my ENT department and managed to get seen last week 6th Nov and was informed that there was nothing obvious. Today i have had an ultrasound scan and i have been informed that i have a number of abnormal lymph nodes in my neck. I was told by the doctor doing the scan that it could be because i had had lymph nodes removed from other side of my neck and had had radiotheraphy, he also took a sample with the fine needle etc.

Now my question is to those of you who have experienced recurrances and what symptons you experienced. I should find results out next week but i have that feeling there is something not right. or are these symptoms im experiencing common side effects that are nothing to worry about. Any info greatly appreciated.

I wouldn't let up on this until finding out definitively what was causing the string of swollen nodes. It could be a number of things, but metastatic cancer is one of them, hence the FNA. It's the standard method of determining what's going on inside lymph nodes sufficiently close to the skin surface to enable using it. There are any number of causes for what you're experiencing. Wait for the FNA pathology before thinking the worst (read on).

Radiotherapy has numerous long-term side effects, a good number of which do not emerge until well afterward, sometimes years later. Radiation induced fibrosis is one of the well-known "late" effects, and it typically does not have a sudden onset, but it's gradual, and continues developing for a long time. Depending on where the fibrosis is occuring it could also cause a number of different symptoms. It's affected my ear and hearing acuity on the side that took the rads, including closing off the eustachean tube for a couple years, shifting my bite which was severe at one point (since resolved by continuing stretching exercises), and range of motion stiffness with my neck. Hasn't limited it but it is quite noticeable and can be uncomfortable at times. I've also had lymphedema, oddly in the legs, but with 22 lymph nodes missing in my neck, the system isn't working the way it used to. Substantial (i.e. strenuous) cycling or cycling trainer exercise very nearly daily gets rid of it, but if I'm off the bike and not on cross country skis or speed skates as an alternative, it comes back and takes a while to work it back off again. Exercise . . . within the limits of any other medical conditions you might have . . . is not just good for you in general, it also helps to mitigate all the long-term treatment effects. What you experience will depend on the specific location of your radiation field, the specific radiation plan your radiation oncologist created (how many rads and where withithin the radiation field), and how your body continues to react to it, including the magnitude of fibrosis generated. I'm five and a half years out from my radiotherapy and the effects of it continue to evolve.

Welcome to head/neck cancer treatment survivorship. Not that it's a club anyone would want to join, but for those of us that have, it was much better than the alternative of no treatment. Hoping what you're experiencing is late treatment effects, or something other than metastatic recurrence.

John

PS - have your TSH monitored at least annually (simple blood test; can be easily included with annual physical blood panel). Radiation induced hypothyroidism is one of the most common late effects emerging years later.

RE: Squomous Cell Carcenoma

by jalind - November 14, 2015

On Nov 14, 2015 2:22 AM SameJourney wrote:

An ENT, who felt by husband's swollen tonsil and lymph node were 85% cancerous, recommended a FNA for my husband. We were told there was a 50-50 chance the findings would be inconclusive....and that was exactly the results we received. Based upon a friend's recommendation, we sought a second opinion with an oral maxifacial surgeon who immediately diagnosed tonsilar cancer and recommended tonsillectomy/rad. neck surgery. If we had to do it all over, we would have skipped the FNA (and saved $400). However, at that time, we didn't know how to proceed and followed the ENT's recommendation of FNA. Busy, I appreciate your comments on these posts.

Note that some form of biopsy is typically necessary for medical insurance purposes before the insurance company will allow proceding with any treatment. "Just looking at it" doesn't usually count as sufficient proof that it's cancer. A good, experienced doctor may know that it's extremely likely with appearance combined with other presenting symptoms, enought to be willing to wager big bucks on it, but the insurance companies want biopsy pathology reports.

I've had docs take photos of stuff just to justify their decisions to the insurance companies that will second-guess and question all diagnoses that could cost them significant money in claims. My ENT did the first FNA in his office and when that came back inconclusive he had me immediately go down to the lab the next day where the pathologist, who had expertise with performing an FNA, could do it there and look at preliminary results to ensure she could make a conclusive pathology report before we left. We were doing this based on a CAT scan that had come back with a rather ugly radiology report, but that could only justify doing the FNA (albeit twice).

One thing to keep monitoring for many years after head/neck rads is blood TSH. The pituitary produces TSH to regulate thyroid T3 and T4 production. In other words, the pituitary controls thyroid T3/T4 output. A high TSH level means the body's pituitary is kicking the daylights out of the thyroid to to do its thing (make T3 and T4) and isn't seeing sufficient results. Radiation induced hypothyroidism is one of the most common late effects from head/neck radiation and the thyroid need not have been in the radiation field proper. It is so sensitive to rads that scatter from the typical fractionated rad plan is enough to do it in. It's not an immediate effect, but typically arises 3-8 years later, and sometimes well after that. Classic symptoms of hypothyroidism are chronic fatigue and inexplicable weight gain that cannot be shed no matter how much physical activity is increased or calorie intake is reduced short of absolute starvation. The bottom line is lifetime monitoring of TSH. My ENT surgeon characterized my hypothyroidism as "it's good for another 30 pounds of weight whether you want it or not and you can't get rid of it." Treating it . . . which will get the weight back down and eliminate the chronic fatigue caused by it . . . is with a Levothyroxine pill (synthetic T4) daily . . . once the exact proper dose is determined . . . and that must be monitored for changes, if needed. If your TSH hasn't been routinely monitored after rad treatment, start having it checked. Once a year in the annual checkup blood panel should work.

John

RE: Squomous Cell Carcenoma

by jalind - July 23, 2015

On Jul 22, 2015 8:14 PM missfather wrote:

Hi Shannibell...very disturbed to hear eating candy and icecream will cause cancer to return!!?? Please..where do you get this info ...I'm finally able to eat somethings again so I eat what I can ..icecream every night after a small meal and I enjoy any sweets that are moist...sometimes I'll put a cookis in icecream to soften it or add dark chocolate ...I had Squamouscel carc in nasal septum 35 radiations head,neck, lymphnodes........I dont think glucose causes cancer ..please clarify ..theres a lot of misinformation on here...I was told my can came from saw dust as I worked as a renovation carpenter for 25 years ...was a heavey drinker years a go ..quit that 14 years ago ..quit tobacco in treatment and now enjoy one cannibus cig each pm to aid in appitite and sleep .......I know sugar has been getting a bad rap ..but cuases cancer to come back!! 

missfather . . .

You're exactly correct in your skepticism about sugar causing, contributing to, or "feeding" cancer. The claims that it does so are the stuff of Urban Legend, perpetuated by Bogus Science and web sites touting bogus alternative cancer treatments that claim to eliminate sugar from your body. The source of this is typically attributed to the use of very short half-life radioactive glucose as a tracer for PET scans after (typically) 24 hours of complete fasting and zero physical exertion. See Snopes.com , MD Anderson's web site, the Mayo Clinic's web site, and the Dana Farber Cancer Institute's web stie (just to name four), all have articles discussing this Urban Legend That Won't Die . . . one that I wish people would quit perpetuating on this forum.

Eliminating all sugar from your body would quickly kill you. Your brain cannot survive long without any glucose. Unlike other parts of your body, it has ZERO capacity to store the glucose it burns at a furious rate as is evidenced in any PET scan that takes in a portion of the brain. Your heart also burns glucose at a furious rate and it will also light up like a beacon in a PET scan. *Excessive* sugar intake will result in weight gain, and if that causes or contributes to being overweight or obese, that isn't good for anyone's general health and well being, just as a completely sedentary lifestyle isn't good either.

John

On Mar 08, 2015 6:26 AM jadat wrote:

Hi my name is Jada. I am 16 going on 17 and i am female. Today i had a headache and neck pains. Later in the day i noticed lumps on my neck on both sides. Whenever i search it up, however, it keeps adding up to cancer and im really scared. Im a normally healthy person but from what i know, breast cancer is the only thing that runs in my family. Someone please respond, i need reassurance.

The likelihood is you have an infection of some type. Lymph nodes get swollen in the neck, under the jaw, under armpits, etc. when your body is fighting an infection. That's why physicians often palpate them (feel them) when they suspect an infection. The lymph system is part of what your body uses to fight it off. You should see a physician about the headache, neck pains and swollen nodes, and go from there. There are all sorts of things that can cause swollen lymph nodes.

While a lot of what you see written talks about anything over SPF 30 being overkill, they don't give the rest of the story. For clothing, that's pretty much the case. For sunscreen, remember that its effective SPF degrades with time, by sweating off, rubbing off, and/or photodegradation from solar UV. It's one of the reasons I use a very high SPF sunscreen so I don't need to continue reapplying throughout the day. If you read the instructions, the sunscreen makers would have you slathering it on at least every two hours, if not more often. There are occasions when that's not just infeasible, it's impossible. By using an extremely high 80-100 SPF, degradation to less than 30 takes quite a while. Been doing it for several years now and it works well with the better sunscreens.

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About jalind

Patient, Survivor
Head and Neck Cancer, Skin Cancer - Basal Cell, Skin Cancer - Squamous Cell, Squamous Cell Cancer
After Treatment, Cancer Diagnosis, Cancer Nutrition, Cancer Treatments, Chemotherapy, Conventional Treatments, Image Enhancement, Radiation, Surgery

Stage IV SCC originating from SCC skin cancer on neck. IMVHO the staging for mine is anomalous due to rigid, somewhat simplistic staging rules, and is actually closer to Stage III (under prior rules it would have been classed Stage III). A modified radical neck dissection removed the original skin lesion near back of jaw, 22 regional lymph nodes, and the parotid gland on that side. Pathology found original skin lesion (already knew this from punch biopsy) plus 6 regional lymph nodes involved with SCC (we already knew about 2 of them from fine needle biopsies). Surgery was followed by 31 daily sessions of adjuvant radiation therapy which was finished mid-April 2010. Coping with various, very long-term and/or permanent radiotherapy side effects including some ongoing fatigue (the thyroid is still functioning well) and major xerostomia (lack of saliva) which causes numerous dental and eating issues and is a general PITA.

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