Radiation or Not?
Comments
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Nodes........
Am I wrong in saying that the nodes are the lymphatic fluid travel routes and that with these routes any infected nodes can also transport bad cells from one area to another...Please correct me if I am wrong and I am only speaking for myself but if I had a positive node then I for sure would do the radiation and adjuvant chemo just for safety sake..I would never want to say I wish I had of done that.......but thats just me....Good Luck with whatever decision you make.........0 -
Thanks Buzzard...
Thanks Buzzard. You make a good point! I appreciate your response! My best to you.0 -
Radiation is no fun - but neither is dying from cancer!
Radiation is tough. For me I think it was worse than the surgery and the chemo. I had 27 of 38 nodes affected and also because of the location of my tumor (right where the colon/rectum meet), mine was considered rectal cancer - so I opted for radiation. At the time I really had no clue what I was in for. But even as bad as it was and all the aftermath we women have to deal with, I would still opt for radiation. If my cancer does ever come back, at least I will have known that I did everything available to me at the time to treat it.
Radiation will not do anything to prevent spread of the cancer to another organ - it only addresses a local reccurrence. Chemo works on preventing spread of the cancer.
I hope your radiation doc fully explained the "female stuff" we have to deal with. Your ovaries will basically be fried, it shrinks your vagina so you have to use dilators after treatment (and/or have regular sex) to stretch the vaginal walls back out and prevent scar tissue from building up and you need to use estrogen cream to keep your skin from being completely dried out. This isn't a temporary thing you have to fix - it's for life. It's no fun. About the 3rd week of my radiation treatments the pain started to set in and it stayed there for about the next month. Still - I don't regret having radiation. Had I known all this before hand I'm pretty sure I would have still gone through with it. My will to live is pretty strong and if this is what I have to deal with so that I can spend more years with my husband and kids, so be it.0 -
radiationNWGirl said:Radiation is no fun - but neither is dying from cancer!
Radiation is tough. For me I think it was worse than the surgery and the chemo. I had 27 of 38 nodes affected and also because of the location of my tumor (right where the colon/rectum meet), mine was considered rectal cancer - so I opted for radiation. At the time I really had no clue what I was in for. But even as bad as it was and all the aftermath we women have to deal with, I would still opt for radiation. If my cancer does ever come back, at least I will have known that I did everything available to me at the time to treat it.
Radiation will not do anything to prevent spread of the cancer to another organ - it only addresses a local reccurrence. Chemo works on preventing spread of the cancer.
I hope your radiation doc fully explained the "female stuff" we have to deal with. Your ovaries will basically be fried, it shrinks your vagina so you have to use dilators after treatment (and/or have regular sex) to stretch the vaginal walls back out and prevent scar tissue from building up and you need to use estrogen cream to keep your skin from being completely dried out. This isn't a temporary thing you have to fix - it's for life. It's no fun. About the 3rd week of my radiation treatments the pain started to set in and it stayed there for about the next month. Still - I don't regret having radiation. Had I known all this before hand I'm pretty sure I would have still gone through with it. My will to live is pretty strong and if this is what I have to deal with so that I can spend more years with my husband and kids, so be it.
Interesting....but I was not told about these issues before I began radiation....this is all new to me...I have one more week to complete..so I guess my dr. is a little late explaining this to me..but sounds like radiation is the standard procedure..0 -
maximum chemo & radiation now
It only takes a single cell to grow into a tumor. I believe the lymph system has the potential to spread cancer. A positive reading suggests cancer was there -- why take any chance that it still is there or will reappear? In my humble opinion, I would would do everything possible, now, to kill the beast. Chemo and radiation is not fun -- but it sure beats cancer. In my humble opinion, this is a no-brainer.0 -
USAKat - good points.
All good points. I had radiation post surgery, which from what I understand, is not normal procedure. From what I understand, radiation is usually done pre-surgery to shrink the tumor and zap the lymph nodes. With me, despite numerous diagnostic testing pre-surgery, all tests showed no lymph node involvment - so I went straight to surgery, under the impression that I was a stage 2 - maybe being able to avoid chemo too!
Unfortunately, the surgery pathology report showed 27 of 38 nodes were affected with cancer. So off I went to chemo for 4 rounds, then radiation/chemo, then more chemo.
The point I wanted to make was that I had no tumor to radiate as it was surgically removed. The radiation was targeted at the area where the tumor used to be. My oncologist and radiation doc evidently took my case to their "tumor board" - whatever that is and the concensus was, this was how I should be treated. I got to see a lot of the radiation doctors charts that show how they target the radiation - it's all very fascinating.
At the time a second opinion never entered my mind. This was all so new to me - I put complete faith in my medical team. Since then, I've learned so much from this and other cancer support groups. By all means get a second opinion if you are uncomfortable at all with what your doctors are proposing. You can't un-do radiation. I don't remember my doctor discussing a lot of the side effects before hand - though perhaps they did and I was just so overwhelmed I don't remember. I do know this - radiation is no fun. Effective at reducing your chances of local reccurrence - you betcha. But no fun at all.0 -
Right again Kat.....NWGirl said:USAKat - good points.
All good points. I had radiation post surgery, which from what I understand, is not normal procedure. From what I understand, radiation is usually done pre-surgery to shrink the tumor and zap the lymph nodes. With me, despite numerous diagnostic testing pre-surgery, all tests showed no lymph node involvment - so I went straight to surgery, under the impression that I was a stage 2 - maybe being able to avoid chemo too!
Unfortunately, the surgery pathology report showed 27 of 38 nodes were affected with cancer. So off I went to chemo for 4 rounds, then radiation/chemo, then more chemo.
The point I wanted to make was that I had no tumor to radiate as it was surgically removed. The radiation was targeted at the area where the tumor used to be. My oncologist and radiation doc evidently took my case to their "tumor board" - whatever that is and the concensus was, this was how I should be treated. I got to see a lot of the radiation doctors charts that show how they target the radiation - it's all very fascinating.
At the time a second opinion never entered my mind. This was all so new to me - I put complete faith in my medical team. Since then, I've learned so much from this and other cancer support groups. By all means get a second opinion if you are uncomfortable at all with what your doctors are proposing. You can't un-do radiation. I don't remember my doctor discussing a lot of the side effects before hand - though perhaps they did and I was just so overwhelmed I don't remember. I do know this - radiation is no fun. Effective at reducing your chances of local reccurrence - you betcha. But no fun at all.
Yes without a tumor I don't know if radiation is necessary...Good followup Kat, and thanks for bringing that to my attention as well.....0 -
Think About a Second Opinion!
Hello Lizzy!
I'm no doctor, so I'm a little confused here. I thought that radiation is targeted therapy, directed at a specific tumor site, which you say you don't have post resection. Did your surgeon achieve clear margins during your resection? If so, why radiation? And was your cancer rectal or colon? I've heard that radiation is often given pre-surgery to rectal patients, but not so often to colon patients. Chemo is a systemic therapy, which targets cells that may be roaming around the body, which seems the most effective treatment for you since you had 1+ positive nodes - you want to nab those wandering cells before they take root.
I'm wondering if this is why your radiation onc wants to speak with other doctors - you have no tumor to target since you are post resection. Do you have a regular oncologist you could also consult with or is the radiation oncologist your only specialist right now? If you only have a radiation oncologist, you might want to get a medical oncologist too and talk to him/her about chemo and ask if radiation is necessary in your case.
Additionally, have you thought about getting a second opinion? I think second opinions are always good, and most certainly beneficial if you are uncertain with the treatment protocol that is being recommended. It's your body and your life - the ultimate choice is yours.
While I do agree with what the others say, attack cancer with all the ammunition available to you, but on the other hand, undergoing unnecessary treatments, especially something that could cause more harm than good doesn't make sense either, especially if it presents long term side effects that you may have to deal with for a long time well beyond your treatments.
And remember, even though all of us have lots of varied experience that we can share with you and offer you various opinions based on our experiences, most of us are not doctors who are well informed about YOUR SPECIFIC medical condition, so you should always look to YOUR doctors to give you informed advice. Just something to think about...0 -
Yikes --- I need some more thoughts.Buzzard said:Right again Kat.....
Yes without a tumor I don't know if radiation is necessary...Good followup Kat, and thanks for bringing that to my attention as well.....
Well Buzzard I was all set to go with radiation with your first comment. Then your last comment (along with Kat's) popped up. I am back at square one. Any other thoughts? Thanks friends.0 -
SECOND OPINION
Katie is right. You need to talk to other doctors, not let the radiation oncologist talk for you.Mmaybe he's right, may be not. As Katie said, we are NOT doctors, specifically not your doctors, but with our collective experience and knowledge of our own treatments, if there is any doubts, we would consult another doctor ASAP. I had radiation before surgery and it was successful in totally eradicating my tumor...but again, that was MY experience, not yours. Talk to other doctors...
Many hugs, Vicki0 -
no brainer?
After reading these other posts, I guess I reacted too quickly -- I really don't know anything about post surgery radiation -- mine was pre surgery. In my case, the surgery showed that the radiation destroyed the tumor, and several lymph nodes were removed, which were clean. I had chemo followeing the surgery as a safety measure. Since there was a positive finding in your lymph system, I would definitely go for the chemo. I suggest writing out your questions beforehand so when you speak to your doctors you will be better prepared and when you do make a final decision you will know it was a rational, well thought out and informed decision. It looks like you caught this at an early stage and that should give you confidence in the days ahead. Keep us posted and good luck.0 -
side effects
I was diagnposed with stage 3 colon cancer cancer. 1 lymph node tested positve. I had a resection with a temporary ileostomy in Feb 07. I had a cancerous polyp that was low. I had 5 1/2 wks of chemo and radiation. I had my reversal in Dec 07. Because of the radiation I have scar tissue rectally which has made the reversal very hard. So hard I'm actuually thinking of having the bag put back on. I have vaginal shortening, which I can no longer have relations it hurts to much. I don't feel that I was adequately informed about these side effects of the radiation before I started the treatment. I regret my decision to take the radiation and I wish I would've gotten a second opinion. I am cancer free but it's hard living with these issues. I am 50 years old.0 -
I had radiations & chemotiny one said:side effects
I was diagnposed with stage 3 colon cancer cancer. 1 lymph node tested positve. I had a resection with a temporary ileostomy in Feb 07. I had a cancerous polyp that was low. I had 5 1/2 wks of chemo and radiation. I had my reversal in Dec 07. Because of the radiation I have scar tissue rectally which has made the reversal very hard. So hard I'm actuually thinking of having the bag put back on. I have vaginal shortening, which I can no longer have relations it hurts to much. I don't feel that I was adequately informed about these side effects of the radiation before I started the treatment. I regret my decision to take the radiation and I wish I would've gotten a second opinion. I am cancer free but it's hard living with these issues. I am 50 years old.
I had radiations & chemo before surgery and the radiation and chemo did the job
I do not need any more treatments all limp nodes and margins were clean after
surgery All limp nodes were negative so the radiation before surgery did the trick.
I have a permanent colostomy.0 -
I definately Agree with Katusakat said:Think About a Second Opinion!
Hello Lizzy!
I'm no doctor, so I'm a little confused here. I thought that radiation is targeted therapy, directed at a specific tumor site, which you say you don't have post resection. Did your surgeon achieve clear margins during your resection? If so, why radiation? And was your cancer rectal or colon? I've heard that radiation is often given pre-surgery to rectal patients, but not so often to colon patients. Chemo is a systemic therapy, which targets cells that may be roaming around the body, which seems the most effective treatment for you since you had 1+ positive nodes - you want to nab those wandering cells before they take root.
I'm wondering if this is why your radiation onc wants to speak with other doctors - you have no tumor to target since you are post resection. Do you have a regular oncologist you could also consult with or is the radiation oncologist your only specialist right now? If you only have a radiation oncologist, you might want to get a medical oncologist too and talk to him/her about chemo and ask if radiation is necessary in your case.
Additionally, have you thought about getting a second opinion? I think second opinions are always good, and most certainly beneficial if you are uncertain with the treatment protocol that is being recommended. It's your body and your life - the ultimate choice is yours.
While I do agree with what the others say, attack cancer with all the ammunition available to you, but on the other hand, undergoing unnecessary treatments, especially something that could cause more harm than good doesn't make sense either, especially if it presents long term side effects that you may have to deal with for a long time well beyond your treatments.
And remember, even though all of us have lots of varied experience that we can share with you and offer you various opinions based on our experiences, most of us are not doctors who are well informed about YOUR SPECIFIC medical condition, so you should always look to YOUR doctors to give you informed advice. Just something to think about...
A second opinion should be a priority in this matter because this is your future - this is going to determine a lot of factors. My surgeon, radiologist and chemo doctor were so amazed at my success in radiation and chemo when it came to the surgery and found there was hardly anything there - clear margins, no lymph nodes, very little cancer left, yet they were all of the opinion that I really didn't need chemo for the second round, but in "their" conclusion as a team decided that why ever take the risk of a single cell escaping even with clear margins. If you can get it now, it is better to get it done now.
You never want to ask yourself, should I have done it "after the fact." It is a tough decision and in the long run you are going to have to make it, but make sure you are going to be satisfied with your decision.
Get a second opinion and that will give you a lot more to go on, but make sure they have all information they need to make an opinion.
Kim0 -
Don't feel left out.elizabethgd said:radiation
Interesting....but I was not told about these issues before I began radiation....this is all new to me...I have one more week to complete..so I guess my dr. is a little late explaining this to me..but sounds like radiation is the standard procedure..
I think that radiation is regarded as obligatory for rectal cancer, ordinarily. My doctors didn't ask me whether I could cope with side effects, either; it was just: you're getting 6 weeks of radiation and which hospital would you like to have the treatments at? Lizzy seems to be something of a special case.
--Greg0 -
radiation
i had a polyp removed endoscopically which was fully expected to be benign, and it came back with cancer so i had a resection which came back positive for 1 lymph node cancerous so i also had post surgical adjuvant radiation and i think my case is the typical scenario for why someone would get it as adjuvant instead of as neo (prior to surgery). My polyp was 20 cm above rectosigmoid junction so questionable as to whether it was even rectal cancer... but a whole team of radiologists at mayo plus my local oncs recommended the radiation. They said without it there was a 65% chance i was already cured and that with it it would bring those odds to 95% of never having a local recurrence. I was told that in making the decision you can take into consideration some factors such as perineural or lymphatic invasion or poorly differentiated cells etc.. I won't lie... for me radiation was hell. I did not develop diarrhea like most- rather i had horrible constipation which developed into impactions and as a side effect to the radiation, i had horrible tenesmus and such bad rectal pain i would have to spend entire weekends in a bathtub. I also developed a rectal stricture and 9 months later for me there is still excruciating pain to go to the bathroom and i also have some vaginal stenosis and my skin is still black... my hips are very stiff and sore as the radiation goes right through them as well. having said all of this..I am the exception..most don't have as severe side effects like i did. Now that i am finished with chemo i expect that things will begin to heal.... Did it save my life? I don't know.. and if i had to do it again i would have to think seriously about it but i suppose in the end i would do anything to get a better chance. I did not say all of this to freak you out, but doctors should be ashamed of themeselves for all the things they refrain from telling patients.
If you decide to have it, i suggest you go to colonclub.com and find the threads on this there.. a nice member named weissoccermom was able to come out of radiation relatively unscathed and she will be happy to give you all kinds of pointers to protect your skin, to prevent the vaginal stenosis etc...0 -
Thank you!
Thank you for sharing your information with me. It will give me fuel to enter the conversation with my doctor. I truly appreciate your note! Thanks.0 -
Good News & Bad News
My Oncologist called today. My case was presented to the local Tumor Board. The pathologist who presented the case at the tumor board looked at all the nodes very critically with her other colleagues and they felt there was no cancer in the other node. So they are just looking at the one lymph node as positive. There was consensus that radiation therapy was not felt to be indicated. So they don’t think the risk of local recurrence is such that that is going to be indicated. No Radiation - YES!!!!!
This is the bad news. The medical oncology colleagues thought I should be given the most effective and aggressive adjuvant chemo. Pills were the original plan but that has now changed – now Chemo by IV. 5FU + Vitamin Lucavorin (makes 5FU it effective) + Oxalaplatin – 85 mg per meter squared every 2 weeks.
After more Internet research, I read side effects vary by each person. Some have neuropathy in the hands and feet, vomiting, nausea, hair thinning or loss. BUT others have much milder reactions. There are anti-nausea drugs to help.
Good News - No Radiation!0
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