Important to me!!!!!!

buellman91
buellman91 Member Posts: 32
in Head and Neck Cancer #1
Hey everyone...Bill here...just finished 35 rads and 9 week chemo for Stage 4 SCC...When first diagnosed, I had a lump the sise of a raquetball on my neck and all the discussion was whether it was to bid to remove or did I have to get rad/chemo to shrink and then remove...it was diagnosed HPV abd shrank immediately,,,,,now the docs are saying I may not need surgery at all. Any one else had this situation? I am supposed tosee my surgeon in 6 weeks then get a PT/MRI to see what theif there are any risidual pieces of tumor left. Anyone else has gone through this?
Also, I know, I know-----everyone is different but I am an acomplished archer and I tried to pull back my bow yesterday and could not budge it. Does your strength come back on it's own or do you have to start from scratch and retrain your muscles?
Please respond!!!!!!
Thanks

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    With a positive node
    the size you are describing, if they don't operate now, you will need careful follow-up. There is a significant chance of persistent disease within that node. On the issue of deconditioning, get back to the program as quickly as possible. It will take some time to recondition. Anything you can do to speed it up is time well spent.


    Pat
  • Jennjallen67
    Jennjallen67 Member Posts: 22
    #3
    longtermsurvivor said:

    With a positive node
    the size you are describing, if they don't operate now, you will need careful follow-up. There is a significant chance of persistent disease within that node. On the issue of deconditioning, get back to the program as quickly as possible. It will take some time to recondition. Anything you can do to speed it up is time well spent.


    Pat

    Thank you Longtermsurvivor
    Without you, my husband would be going crazy without knowing this information. You've been very helpful. He's still a little to weak to start doing any conditioning. He mowed the lawn(we have a riding lawn mower) and became very ill right after. He feels so much better than before, so he thinks he can do what he always did. It will take time, but we hope to be on the road to recovery! If he needs the surgey, what is the recovery time for that? Again, thanks for all of your help!

    Jenn(wife of Buellman91)
  • RogerRN43
    RogerRN43 Member Posts: 185
    #4
    Factors
    Depends on your particular circumstances and the opinions of the docs.
    Was the lymph tumor involving structures that would make it's pre-treatment resection challenging?
    There is also research out there to suggest no survival benefit pre or post neck dissection.
    And some docs believe there is a risk of cells escaping to other parts of the body during a pre ND. Then there's the wait time for healing before chemo and radiation can start which some believe can influence outcome if the disease is fast growing/spreading.

    What is the size of the residual node now?
    There are studies that report residual nodes can be 20-30% cancerous.
    In one study that examined size, residual nodes less than 1.5cm are 95% NOT cancerous.

    I have read some docs will not hesitate and perform a neck dissection as early as one month post treatment. Others do followup scans, and if repeated scans show no change, they leave them. Apparently, docs who take the wait and see approach determine if a residual node is cancerous by the way it looks and if it grows between scans. There are members here that have had post treatment neck dissections and maybe they can shed some light on the subject.

    Keep in mind a neck dissection depending on how extensive can have disfigurement and some serious side effects on its own.
    The desired outcome is a non-surgical "full" treatment response where any evidence of the primary tumor and node(s) are gone. Some on this board have accomplished this via induction chemo prior to rads, or some via the standard concurrent chemorad treatment. However, my rad oncologist did tell me that it is not common, and residual nodes are often the norm if there is no pre neck dissection.
    And if the disease is caused by HPV, docs expect a better response to treatment. Perhaps that is part of the checklist for no pre ND. Since yours is, have comfort that future recurrences are less likely than tobacco related disease.

    You might want to ask your docs and their reasons to understand the treatment decisions being made in your particular case.
    All the best.
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    RogerRN43 said:

    Factors
    Depends on your particular circumstances and the opinions of the docs.
    Was the lymph tumor involving structures that would make it's pre-treatment resection challenging?
    There is also research out there to suggest no survival benefit pre or post neck dissection.
    And some docs believe there is a risk of cells escaping to other parts of the body during a pre ND. Then there's the wait time for healing before chemo and radiation can start which some believe can influence outcome if the disease is fast growing/spreading.

    What is the size of the residual node now?
    There are studies that report residual nodes can be 20-30% cancerous.
    In one study that examined size, residual nodes less than 1.5cm are 95% NOT cancerous.

    I have read some docs will not hesitate and perform a neck dissection as early as one month post treatment. Others do followup scans, and if repeated scans show no change, they leave them. Apparently, docs who take the wait and see approach determine if a residual node is cancerous by the way it looks and if it grows between scans. There are members here that have had post treatment neck dissections and maybe they can shed some light on the subject.

    Keep in mind a neck dissection depending on how extensive can have disfigurement and some serious side effects on its own.
    The desired outcome is a non-surgical "full" treatment response where any evidence of the primary tumor and node(s) are gone. Some on this board have accomplished this via induction chemo prior to rads, or some via the standard concurrent chemorad treatment. However, my rad oncologist did tell me that it is not common, and residual nodes are often the norm if there is no pre neck dissection.
    And if the disease is caused by HPV, docs expect a better response to treatment. Perhaps that is part of the checklist for no pre ND. Since yours is, have comfort that future recurrences are less likely than tobacco related disease.

    You might want to ask your docs and their reasons to understand the treatment decisions being made in your particular case.
    All the best.

    it's around 22%
    The chance of spread through the nodes. The information is out there if you look for it. Many folks here did not get neck dissections and it certainly is a personal decision between your doctor and yourself. My doctor wanted to wait and see and I didn't. Recurrence for Head and neck is high and it is a risk assessment on your part. There is no reason why a dissection cannot be done post radiation and Roger is right that they are sometimes done before chemo and Rads. I think his statement about equal survival benefit has to do with before and after dissections with neither having advantage over the other as far as placement in the treatment protocol. There is evidence to suggest that your overall chances of survival with node involvement are better with a dissection. You should also know that there are probably a dozen different variations of neck dissections with a selective neck dissection being less risky than a radical dissection. I don't think Archery should be your determining factor here. Your chances of losing physical ability with a modified or selective dissection are low. There are many ways to improve mobility after surgery. You will get good arguments both ways and ultimately it comes down to your personal risk tolerance. It is a complicated disease! Best of luck in your journey.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Jennjallen67 said:

    Thank you Longtermsurvivor
    Without you, my husband would be going crazy without knowing this information. You've been very helpful. He's still a little to weak to start doing any conditioning. He mowed the lawn(we have a riding lawn mower) and became very ill right after. He feels so much better than before, so he thinks he can do what he always did. It will take time, but we hope to be on the road to recovery! If he needs the surgey, what is the recovery time for that? Again, thanks for all of your help!

    Jenn(wife of Buellman91)

    I had a full radical neck dissection
    and I must say I didn't find it to be any big deal. It really wasn't very painful, and recovery didn't take very long. Lots of people nowadays have these minimal dissections, and those are an even better result. Just tell him to take it slow and easy. I'm now 7 weeks out from rads, and my activity levels are vastly improved. I don't fatigue as the day goes on anymore. I'm walking about 3 miles a day now (I was running 4-5 miles a day before the chemo began). I would run again, but my mouth is still pretty sore, and jogging tends to jar my teeth into the ulcers enough to make it impossible. I also lift weights, but that's going to take awhile to get back to my pre-chemo/rad levels. Anyway, there's plenty of time ot recondition, so encourage him to go at it, but be reasonable.

    Pat
  • stayingpositive
    stayingpositive Member Posts: 89
    #7
    some do, some don't
    In my case the doctor decided that since the lymphnode was growing rapidly, it should be removed. Mine was "excised" or cut out, the result was about a 10 to 12 inch scar, some loss of arm movement and strength, nerve dmg (pain), tonal quality of voice (i can no longer sing as good as I used too). I have since undergone radiation treatments and a week from now start a years worth of chemo. I really didn't have much of a choice on mine, the knot in my neck grew quickly and even tho it didn't test positive with a needle withdrawal of fluids, the doctor and I both agreed it should be removed. The reason for the large incision was they took alot of other lympnodes (48) and scraped alot of nerves, muscles and tendons around the lymphnode area to make sure that all of the cancerous cells were taken.
    As it is now, i'm positive what was done needed to be done even with the small losses I have taken. If I wake up a year from now, with pain from my messed up nerves and still can't raise my arm out and up...so be it... I'll be waking up.
    Oh, I start seeing my physical therapist next thursday, hope I feel good enough during chemo to at least attempt to exercise a little bit.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #8
    It's different for everyone.
    Stage 4 SCC, base of tongue, with bilateral lymph node involvement, here. The first thing I found was a >3-cm lymph node in my neck. My local ENT removed it, partly for diagnostic purposes. I visited the Stanford Cancer Center Tumor Board for a consult, and Stanford was pretty emphatic that removal of that node was completely unnecessary, was no better than butchery, and that Cisplatin Chemo and Radiation would be more than sufficient to fully resolve the cancer. They also noted that, should any evidence of malignancy remain behind, it could certainly be removed surgically, but that they would only do surgery IF they saw evidence that a malignancy remained.

    That being said, Stanford then told me that my treatment was not rocket science, and sent me back to my local Regional Cancer Center for treatment. Closing in on two years post treatment, and no evidence of any issues with PET-CT scans.

    Yes, I did lose quite a bit of strength. I was not able to lift one arm fully above my head for over a year, even with physical therapy. It will come back, but you will need to work at it.

    Deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Similar....
    But not quite....

    I was STGIII SCC Tonsils, HPV+...with a single lymphnode affected also as a secondary. The tumor was not nearly as large as you describe, mine was more the size of a small grape.

    But it was close to the carotid, so they chose to remove my tonsils, go for the nine weeks of chemo (Cisplatin, Taxotere and 5FU). Then seven weeks of concurrent Carboplatin and the 35 dailys rads.

    From there it would be decided if a neck dissection would be needed...mainly depending on the results.

    I was lucky, the tumor completely dissolved, and was confirmed gone (at the time) with a CT.

    That was over three years ago, an I've been clean and clear since.

    So I'd say it all depends on your scans, results and of course your MD's advice.

    I became weak as for doing yard chores and such. But that was also due to lack of energy from the rads, calorie intake and it being summer in Florida at the time.

    JG
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #10
    stayingpositive said:

    some do, some don't
    In my case the doctor decided that since the lymphnode was growing rapidly, it should be removed. Mine was "excised" or cut out, the result was about a 10 to 12 inch scar, some loss of arm movement and strength, nerve dmg (pain), tonal quality of voice (i can no longer sing as good as I used too). I have since undergone radiation treatments and a week from now start a years worth of chemo. I really didn't have much of a choice on mine, the knot in my neck grew quickly and even tho it didn't test positive with a needle withdrawal of fluids, the doctor and I both agreed it should be removed. The reason for the large incision was they took alot of other lympnodes (48) and scraped alot of nerves, muscles and tendons around the lymphnode area to make sure that all of the cancerous cells were taken.
    As it is now, i'm positive what was done needed to be done even with the small losses I have taken. If I wake up a year from now, with pain from my messed up nerves and still can't raise my arm out and up...so be it... I'll be waking up.
    Oh, I start seeing my physical therapist next thursday, hope I feel good enough during chemo to at least attempt to exercise a little bit.

    Stayingpositive
    Your neck dissection sounds just like the one I had. Same amount of nodes taken and my nerves were stretched trying to get to the cancer. Same arm pain.

    But my surgeon gave me an exercise to do to help raise my arm up. I am to hold my arm straight down and lift it up to my head. I have to use the other arm to accomplish this but it is getting stronger week by week and the pain is decreasing. I am to do three reps of 12 = 36 lifts.

    It is taking so long to heal that some days I do get discouraged. Next time I see him I will ask if Lyrika is a good drug to help alleviate the pain. Less pain will allow me to better do the exercises.

    Just my 2¢

    Tommy
  • mls351w
    mls351w Member Posts: 90
    #11
    lump
    Stage IV SSC base of tongue with a lump on right side of my neck the size of a hard boiled egg. My rad onc was more concerned with the lump than the BOT. 2 weeks of 24hr chemo and 40 rads and the lump started residing immediately. Nothing was visible after treatment. Had CT scan and surgeon saw something he didn't like in the original node. 4 months after treatment, he removed it and 2 on each side. The 2 on each side was clear but the center was cancerous. Everything was back to normal after 2 weeks. Never lost any strength at all.
    Went back to work 4 weeks after surgery. No side effects what-so-ever. Mouth gets a little dry in winter when I sleep. No teeth issues, no taste loss, nothing. I am the poster child for this. Next month I will be 59, and have been clean for 5 years and 5 months. Everyone is different. Have not heard of many people that breezed through it like I did. Should not say breezed through it. I had severe neck burns and could not swallow due to throat pain.
    By the way, never smoked and drink about 3 beers a year. Go figure.
    Good luck and best wishes.

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