Radiation or no radiation
I just had my third surgery since May 2017. First surgery was to remove a liason on the floor of my mouth under my tongue. 2nd surgery (June 2018) was to remove my right neck lymph nodes. 3rd surgery (August 2018) was to remove my left neck lymph nodes. CT scan results were the reason for the right removal. Of 27 nodes tested only 1 came back as cancerous. PET Scan results were the reason for the left neck lympn node surgery. Of the 52 nodes tested only 1 came back as cancerous.
My doctor (suegeon) recommended I meet with the RT Oncologist. She recommended 30 treatments. When she heard of the Pet Scan results she recommended chemo and a additional 5 treatments. I've read the side effects of RT and Chemo, and I am not sure I want to go through all that if right now nothing is showing up on CTs and Pet Scans. Why put my body through treatment if it is not necessary? If I had a "hot spot" that couldn't be removed with surgery then I would have no choice but the RT. Right now I feel I have a choice. My surgeon said it's my choice while the RT Oncologist says I HAVE TO or I will die.
I was wondering if anyone in this forum decided against RT in a situation similar to mine. If you did opt out, how's it going for you? My feelings are to continue "observations" of my blood work and scans, and deal with the results when identified. That's how we have been playing it and results were the reason for the last 2 surgeries.
Finally during my last stay, during recovery my roommate had cancer similar to mine. He opted for radiation and chemo. We spoke a little bit. He said if he had to do it again he would have opted out of the RT and Chemo. He said those treatments took away the few healthy months he had left. He is 51, in very bad shape, and will leave for hospice.
There lies the decision. RT or no RT. Quality of live?
Comments
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It's Not That Easy
Hiya Bob,
It's not as easy as RT or no RT. Everyone's situation is different. Your roommates "similar" Cancer is not the "same" Cancer. You're also different physically and psychologically. If I were you, I would get a second opinion, preferably from a major Cancer treatment center such as Sloan, MD Anderson, Cleveland Clinic, etc. I would also find out if I was a candidate for Proton Therapy and see if my insurance would cover Proton Therapy vs. IMRT. I asked about Proton Therapy and my Oncologist said that with my type of Cancer, they've had better results with IMRT. I also found out my insurance would not cover Proton Therapy.
I'm coming up on four years since my last radiation. If you would have asked me four years ago if I would do IMRT again, I would have probably said no. Everything about it sucked. But four years later I'm glad I went through it.
One piece of advice if you do decide to have RT - get the feeding tube before you need it. My experience would have been so much easier if I didn't wait to get it.
Best of luck with whatever you decide.
Bugsy
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Ask for Multiple Opinions
Hi Bob,
Welcome too the group. If I understand you correctly of the 52 lymph nodes removed Only 1 was cancerous. If this is correct was that one on the left and one on the right? If it was 1 total, you should not have had any lymph nodes removed by surgery from the other side. This is against standard practice. However if you had 1 cancerous cell on each side from each side then removal of lymph nodes from each side is needed. You do state CT scan was the reason for removal of 27 was CT scan on the right, and then you state 52 nodes where removed from right side and again the reason for removal was CT scan. So I think you mean 1 node from left and 1 node from right was cancerous. In which case the 2 operations were both needed.
In your left side only 1.9% of the lymph nodes renoved was cancerous and on your right side ony 3% was cancerous. Do you have any idea how many lymph noes of your roommate was cancerous? To me they are giving you too much radiation. I would defenitely suggest that you ask for a 2nd Opinion frfom one of the hospitals bugsboy has recommended, and add Mayo Cliinc in Rochester MN as well as Dana-Farber in Boston. If none of these places are near where you are, just find a good teaching hospital near you to ask for a 2nd opinion.
Good liuck and best regards,
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Why Take a Chance?
I too was one of those who could have skipped rads but decided to go through with it because I didn't want to spend the rest of my life worrying if it was coming back. Yes, surgery got rid of my tumor and lymph nodes with clear margins but why take the chance?
Yes, there are side effects involved and this is a decision you and only you are going to make. It is a roll of the dice but I prefer the better odds.
Good health going forward.
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There are generally accepted algorithms for the best treatment..
Depending on what kind of cancer you have. You can NOT compare your cancer to your roommates cancer. Ask your care team to show you the NCCN guidelines for your specific cancer and what the recommended treatment plan is. These guidelines are very specific and are based on many factors such as the size of your primary tumor, how much lymph node involvement you had, whether you are "high risk" based on positive margins, extranodal extension, perineural invasion, etc...
I second the suggestion that you find an academic medical center/NCI designated comprehensive cancer center... There are appropriate instances where "less is more" and treatment de-escalation is happening. But it's not a decision to be made lightly. If you're goal is "cure" then you want to make sure you hit it with the right treatment the first time. Quality of life is important too, but they are getting better and better about reducing side-effects.
Good luck. Brandon
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I was in an opposite
I was in an opposite situation. Doctors recommended radical neck dissection on both sides and robotic surgery on the tumor. I instead insisted on chemo and rads instead of surgery. My opinion was that cutting has permanent effects while chemo and rads often have temporary side effects. Plus, you can always cut later if necessary. Proved the right choice for me. Back to normal with a couple of months of treatment ending. Most people had no idea I went through any treatment. I had the standard 35 rads (15-20 minutes each) and chemo. I personally didn’t think the side effects were that bad (in retrospect), though they seemed pretty bad at the time. If chemo and rads would improve your odds then I’d do it.
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"My opinion was that cutting
"My opinion was that cutting has permanent effects while chemo and rads often have temporary side effects."
More often surgery has quicker recovery and fewer long term complications than rads. Additionally, no rads are used then there is no constraint or concerns about re-radiation. There is also bias toward surgery in young patients due to fewer long term side effects. Rads can do damage to bone that shows up years down the road and compromise the teeth. Just some other thoughts.
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Totally depends who you talk.donfoo said:"My opinion was that cutting
"My opinion was that cutting has permanent effects while chemo and rads often have temporary side effects."
More often surgery has quicker recovery and fewer long term complications than rads. Additionally, no rads are used then there is no constraint or concerns about re-radiation. There is also bias toward surgery in young patients due to fewer long term side effects. Rads can do damage to bone that shows up years down the road and compromise the teeth. Just some other thoughts.
Totally depends who you talk. Two sets of "experts" gave me two totally different opinions. That's the benefit of not simply showing up to a doctor's appointment and just sitting there and nodding and thinking they know everything. Get multiple opinions and go with the one you are most comfortable.
I'm just over a year out of treatment and 100% again. Had I had surgery I am confident I'd have lymphedema issues and was told some slight speech issues. I prefer 100% back to normal.
Could long term issues pop up regarding radiation? They could. But my team told me my teeth are great and just don't take too many blows to the chin in boxing and I'd be fine.0 -
No Radiation/Chemo Decision Update
So if you read my original post from September 8th, 2018 you'll see I was going to opt out of radiation and chemo. I was going to continue with CT and PET scans for observation. Well I had a Pet Scan on December 5th. It came back clean, all clear. I had a Chest CT scan on February 4th and that too came back clean and clear. My next PET scan is scheduled for June 2019. Keep in mind all my tests are at MSKCC as well as my doctors. I am currently being treated (physical therapy) for Lymphedema also at Sloan.
It appears at least at this time that my decision not to opt for radiation (6 weeks of treatment) and chemo was the right one. If I had opted for radiation/chemo the claim might have been that the treatments worked and there was no evidence of any cancer. In any event I was able to avoid the side effects of radiation/chemo. I'll post the results of my June PET scan.
I also starting taking Turmeric Curcumin tablets, 1200 MG one a day.
Thanks for all the feedback and comments.
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Quality not Quanity
Never understood when My Brother-n-law would say it, now I understand. I walked around 3 yrs with a dime size patch in back of Throat, left tonsil. Traveled All over Europe, ate what I wanted enjoyed wine tastings, generally enjoyed life full of energy. All Drs said nothing to worry about. Saw an ENT for horrible Sinus allergies, he DX it. Stage 3, HPV+, no lymph nodes. Pushed by Drs to start treatments ASAP. Was pushed into 7 wks Chemo/Rads. Said couldn’t remove since couldn’t cut out robotically. Funny had both tonsils removed at 8 yrs old, they managed without Robiotics . 3 yrs later up until new tests next month NED, but absolutely NO quality of life. Lost Salivary Glands, thyroid messed up , desert dry mouth 24/7 Nothing relieves it. So I drink too much fluid trying to keep up with My swallowing abilities & driving Me crazy & depressed with this dry mouth. Even went to a Specialist in LA for Duct repair from the radiation. He got them opened some but all that comes out is gummy, as they call it, Chemo saliva. This has also altered My taste buds. Best part all the fluids are screwing up My sodium levils to the point of a stroke. Now a homeopathic Dr said other levels are off & been off leaning towards Liver & Kidneys not functioning correctly. So NO, wish I would have waited and reconsidered their plan. Maybe could have had another year of living. 61 & feel like My Mom did before she passed at 92.
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No Radiation/Chemo Decision Update
Had a followup visit with my MSK surgeon last week. Exam included a visual inspection of my mouth's interior and manual hand inspection of my neck area where I had the two (2) lymph node dissections last June and August. All clear. As I had previoulsy mentioned my next Pet Scan is scheduled for June 10th. I asked my surgeon if the scan comes back clear again (last scan was in February) how often would he call for them. He said we would drop back to once a year Pet Scans.
I asked him if I should continue to do the post surgery neck stretch exercises he instructed me to do last year. He said yes. My physical therapy sessions for Lymphedema (also at Sloan) have ended however they also told me to continue the stretch routine (different from my surgeons). My surgeon said he can see the benefits of the exercises as my neck is almost normal however I still have the scars from the surgeries and skin flaps that may or maynot go away. My surgeon also mentioned I should continue to rinse my mouth out with baking soda/salt soultion in warm water daily.
I do NOT skimp or skip my stretch routines or oral rinsing. Even when on vacation I do them. I also wear a compression head/neck wrap once a day for about an hour. They wanted me to wear it overnight while I slept but I couldn't do this. It's suppost to help in reducing the skin flaps on my scar lines.
I'll post the reuslts of my June Pet Scan when I get them. Staying positive.
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I was in kind-of sort-of a similar situation
BOT cancer right side, surgery + modified radical neck dissection (both sides, took a total of 57 lymph nodes/only 1 cancerous, same side as tumor/right side).
Surgeon recommended a lower dosage of radiation - new research apparently showing in cases like me it's just as effective as the full blast - and only on the side of the tumor. My radiation oncologisgt, however, wanted to do radiation on both sides of the neck, warning that, well, if you don't get the left side of the neck there could be cancer cells over there not currently showing up on the pet scans and it'd be trouble down the road.
My surgeon actually said *Some people walk away aat this point with no radiation... I don't recommend it." So I knew I wanted to go through with it on the right/tumor side, but I definitely wanted to minimize the effects after all the horror stories, and it took a bit of a fight with the rad onc to get him to agree.
16 months later just got a clean CAT scan, will be following up with a PET scan this summer... and if ultimately I'd need radiation on the left side I can do it.
Even at the lower radiation dosage, side effects were pretty brutal for me, though I never did get a feeding tube, toughed it out. Felt like I'd swallowed razors.
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No Radiation/Chemo Pet Scan Update: 6/11/19
Had my scheduled Pet Scan yesterday, all clear no tumors or hot spots! This is my second Pet Scan (last one was Dec 2018) that came back great. Remember I declined radiation and chemo treatment back in June of 2018. My surgeon recommends periodic oral inspections by a dentist. I see my surgeon in August for a routine office visit. He said my next Pet Scan would be in a year.
Seems like I made the right decision to opt out of radiation and chemo, and avoided all the side effects that come with that treatment. I pray everday for continued great health.
Thanks to all who responding to my posting. Best to all!
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Visual mouth exam all clearBOB438 said:No Radiation/Chemo Pet Scan Update: 6/11/19
Had my scheduled Pet Scan yesterday, all clear no tumors or hot spots! This is my second Pet Scan (last one was Dec 2018) that came back great. Remember I declined radiation and chemo treatment back in June of 2018. My surgeon recommends periodic oral inspections by a dentist. I see my surgeon in August for a routine office visit. He said my next Pet Scan would be in a year.
Seems like I made the right decision to opt out of radiation and chemo, and avoided all the side effects that come with that treatment. I pray everday for continued great health.
Thanks to all who responding to my posting. Best to all!
My dentist thought he saw a tear in my mouth scar tissue where I had my 1st cancerous liason removed (floor of mouth). I saw my surgeon last week, he said it was fine. Rescheduled another visit with him in October. He said based on the results of the last two (2) Pet Scans he'd probably order a Cat Scan next June.
Again I am feeling thankful that I choose to opt out of radiation and chemo treatment.
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Great News To HearBOB438 said:Visual mouth exam all clear
My dentist thought he saw a tear in my mouth scar tissue where I had my 1st cancerous liason removed (floor of mouth). I saw my surgeon last week, he said it was fine. Rescheduled another visit with him in October. He said based on the results of the last two (2) Pet Scans he'd probably order a Cat Scan next June.
Again I am feeling thankful that I choose to opt out of radiation and chemo treatment.
No better news than all clear or NED or a little of both. Glad everything's working out for you and avoiding chemo and rads is good anytime we can. God Bless and wishing you many more cancer free check-ups
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Sorry but she was giving advice 1 yr out not longerOKCnative said:Totally depends who you talk.
Totally depends who you talk. Two sets of "experts" gave me two totally different opinions. That's the benefit of not simply showing up to a doctor's appointment and just sitting there and nodding and thinking they know everything. Get multiple opinions and go with the one you are most comfortable.
I'm just over a year out of treatment and 100% again. Had I had surgery I am confident I'd have lymphedema issues and was told some slight speech issues. I prefer 100% back to normal.
Could long term issues pop up regarding radiation? They could. But my team told me my teeth are great and just don't take too many blows to the chin in boxing and I'd be fine.. But he has warned Me Often symptoms come later such as in My case Terms & Conditions. If I had been told reality or their story when I started out I would have re-thought some decisions & just trusted My gut which they have now proven is true in certain cases. The Centers That treated Me in My area did in fact do things wrong & now there is a Class Action Suit, I am involved in. All hush, hush here but I feel people have a right to know the truth & new research. It’s our lives in their hands, We HAVE rights. Enough allowing Politicians, Lawyers, Drs, to do that. The truth IS out there not always easy to find, so We as Survior/Warriors can not speak up. Wish more would have with Me!! Knowledge is a Power. Now you even are promoting Not allowing Us to speak up. She was giving advice 1 yr out, not good enough. Dangerous when it comes to someone’s lifetime. Advice at 1 yr on products to help problems, give an ear & support. So guess bad Me for trying to speak any truth yet I have lived it & know allot more in 3 yrs. don’t worry got your message, won’t speak up just listen! PS. My teeth &Gums are doing great 3 yrs later, why learned to take care of them correctly by a fantastic, Caring Dentist. But he has warned Me to be prepared NO Saliva can take its toll quickly. At least he’s honest!
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Bob438BOB438 said:No Radiation/Chemo Decision Update
So if you read my original post from September 8th, 2018 you'll see I was going to opt out of radiation and chemo. I was going to continue with CT and PET scans for observation. Well I had a Pet Scan on December 5th. It came back clean, all clear. I had a Chest CT scan on February 4th and that too came back clean and clear. My next PET scan is scheduled for June 2019. Keep in mind all my tests are at MSKCC as well as my doctors. I am currently being treated (physical therapy) for Lymphedema also at Sloan.
It appears at least at this time that my decision not to opt for radiation (6 weeks of treatment) and chemo was the right one. If I had opted for radiation/chemo the claim might have been that the treatments worked and there was no evidence of any cancer. In any event I was able to avoid the side effects of radiation/chemo. I'll post the results of my June PET scan.
I also starting taking Turmeric Curcumin tablets, 1200 MG one a day.
Thanks for all the feedback and comments.
Good for you Bob, trust your gut! Good luck & hugs!
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NO Radiation/Chemo Update: 12/20/19
So if you read my posts you know I decided against receiving radiation and chemo treatments for my cancer. My surgeon scheduled a CT scan last week rather then a PET scan since my last 2 PET scans came back all clear, NED. Results of a neck and chest CT scan last week came back all clear, again NED. Feeling pretty good of my decision not to go through radiation and chemo treatments. Feeling thankful and blessed. Christmas came early this year.
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NO Radiation/Chemo Update: 12/5/20
Had another neck and chest CT scan earlier December. All came back clear again, NED. If you remember I opted out of the recommended radiation and chemo treatment in 2018. Since my last surgery in August of 2018 PET and CT scans all clear. I see my MSKCC Surgeon next month for a visual mouth inspection and lymph node checks. Not sure but it seems I am now down to annual CT Scans. Felling good! God bless.
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