Please explain this makes no sense to me.

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ms.sunshine
ms.sunshine Member Posts: 707 Member
edited March 2014 in Breast Cancer #1
Went thru chemo first the chemo killed the cancer. Pet scan showed no cancer anywhere. Went in had surgery. The tissue including 27 lymph nodes showed no cancer according to the pathology report. Now my doc wants me to go thru radiation. What for I do not have cancer anymore. She says just in case there was a cell left behind that may come back.

I am not going thru radiation based on a maybe when there is no evidence of cancer. It's gone. She refused to release me and refered me to a radiation oncologist then told me I was no longer her patient and I needed to direct all questions and concerns to him. She told me if I refused radiation fine then he could release me.

I wouldn't start until the middle of June because I have to heal after my surgery. I am schedule for another test in July. Is this norm for doctors to do this when the tests show no cancer? Why have any treatments when one is cancer free?

Comments

  • XO143XO
    XO143XO Member Posts: 23
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    I am in Way Over my Head on This One... but
    I am only 5 weeks diagnosed so take this with a grain of salt. It is my understanding that we are never cancer free. That even applies to people that will never even have cancer that is diagnosed. Our immune system can handle most random cancer cells through out our lives but when the cells grow faster than our immune system can handle then that's when we get into trouble.

    This is only my personal rudimentary understanding of my own personal condition. With that being said, I do visualize random bad cancer cells (like PAC MAN characters... I'm dating myself) running around in my body.

    Again, I want to do everything I can to catch those suckers before they turn ugly again. I don't think I will ever be "Cancer Free" but I may never have a call for further treatment.

    My sister-in-law is fighting lung, liver, and bone cancer. I prayed and prayed but thought her situation was dire. Three months later she sent an email that she was "Cancer Free." I thought our prayers had been answered and they were. Shortly after I was DX, she told me she now has it in her brain and is undergoing brain radiation.

    Maybe I am saying way too much. Maybe I am not saying this right. All I am trying to say is educate yourself and then do what you believe is best for you.

    Damn. I am ready to erase all of this but I am going to post it and hope it is taken in the spirit that it is intended. With love and concern.
  • sunny_girl
    sunny_girl Member Posts: 33
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    I certainly understand your
    I certainly understand your frustration - it is so hard to know what treatments to get and whose advice to trust. I gather from the fact you had chemo before surgery and 27 lymph nodes removed that your cancer was large, aggressive (probably Grade 3) and your doctors believed it may have spread or they wouldn't have removed so many nodes. Great news there wasn't any evidence of the cancer in pathology. A negative PET means you have no growths of a cm or larger visible - again great news. However, it isn't sophisticated enough to guarantee there are no cancer cells left.

    The radiation works differently than chemo. Chemo kills dividing cells, so the more aggressive your cancer, the better it works. Just because your cancer appears to be gone doesn't mean there aren't any cells lurking. Further, those cells may have different characteristics than the primary tumor, meaning they may not have been dividing as quickly and may not have been killed by chemo. Your radiation oncologist can explain it best, but what it does is mess up the nucleus of the cells (both healthy and cancer) so if you have any cancer cells left they aren't able to replicate themselves. Statistically it reduces the risk of another cancer in that area by 50%. The statistic for your stage and grade may be different.

    You have nothing to lose by having a consultation with the radiation oncologist, and if he/she can't make a convincing arguement, then you can always decide not to do it.

    Good luck with whatever you decide to do.
  • 24242
    24242 Member Posts: 1,398
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    All about chances now
    Risks are the guide for having good long lives. It is thought that cancer seeds itself in the opening where they drag the tumor and tissue out so radiation is necessary to kill off the straglers if there are any.
    I looked at treatment this way. If I was doing any of it I was doing everything that extended my life. Radiaiton gave me less than 10% better chances but I decided every little bit might help in the long run. I had individual mastectomies because it was not recommended I have bilateral by surgeon or mother who is a paliative care nurse. Not easy and couldn't believe I would go back for another though it didn't have cancer in it. I just knew in my soul I couldn't live with one knowing it too had a greater chance now of breast cancer.
    I guess maybe your cancer was not encased so chances it could spread.
    Good luck to you and remember to do what you are comfortable with.
    Tara
  • pitt
    pitt Member Posts: 387
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    Radiation actually does a
    Radiation actually does a much more significant job of reducing recurrence than chemo. I believe the stats were 65% success with radiation. Why would you not want that? If you were to have chosen only one, I would have gone with the radiation. It doesn't hurt; it kills any remaining stray cells; and it prevents recurrence at a much greater rate than chemo. I realize this is a lot to digest, but when it's your life in question, doesn't it make sense to listen to the experts and do all that you can to live a long and healthy life? Pitt
  • chenheart
    chenheart Member Posts: 5,159
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    Cancer is a tricky beast,
    Cancer is a tricky beast, indeed. Those cells are sometimes stealth, they hide in places even after surgery and chemo. As my oncologist called them, they are "rogue" cells. Radiation is an excellent way of rooting out and destroying these rogue cells which may have been left behind undetected and undestroyed by the chemo.

    Any treatment which may elevate our chances of staying in remission and livng a long, healthy Life After Cancer is something to seriously consider. I am sorry that you and your oncologist didn't communicate well~but please research and perhaps reconsider the radiation.

    We want you with us a long, long, time!

    Hugs,
    Chen♥
  • rm22111
    rm22111 Member Posts: 54
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    radiation at the end
    I too felt that way, but after talking to the radiation oncologist I change my mind. I now call radiation insurance. It is like insurance. We buy it just in case we get in an accident. we may never need it, but it is good to have. Radiation for me is like insurance. I will never know if it made a difference, but If it will I might as well do it. I have heard many times. That the more aggressively you treat your cancer the first time the less chance it has of coming back. It is funny my radiation oncologist calls him self the janitor. He says he is the last to be seen and most people are ready to be done when they see him, but he says that you want to make sure everything is done/cleaned up before you go on your way. He says he would prefer to go first, but that is not how it works.

    Go talk to the radiologist. He/she will explain how it works and how much of a difference it will make.

    rm22111
  • katznc
    katznc Member Posts: 70
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    Protocols and Squatters
    There is a standard protocol for different dx. It is what they have found in the last 20 years that works the best at giving you a better chance of being "cancer free." Unfortunatly for us, cancer free doesn't mean that we are literally cancer free. Those little devel cells are moving around and you want them not to become squatters. It just means they cannot detect cancer. I had an tumor behind the tumor they saw, in the breast they removed, that was not detected, seen on tests or felt. i was lucky I had the mast. instead of the lumpectomy. Even a pet scan can't see everything.

    Just like the term" 5 year survival rate" doesn't mean cancer free it just means you are still alive and maybe even doing new treatment for a reoccurance or a new cancer. Its all very sad when you find out what this beast really is and what you need to learn to live with.

    I would hope that maybe you will get another opinion that can explain this all in a better light and maybe do some more research on your own so you are making a totally informed decision. As everyone here says....The ultimate decision is yours.

    my prayers and hugs to you
  • Rague
    Rague Member Posts: 3,653 Member
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    We're never cancer free -
    We're never cancer free - there may be No Evidence of Disease but we are never 'cured'!

    The protocol is different for different cancers - all breast cancers are not the same. In my case - I did chemo first to try to shrink and get margins before surgery - which we did. I have Inflammatory BC (have as in though there is No Evidence of Disease at this time the potential is fairly high that it can/will show up somewhere else). It is a very aggressive form and does not have a great long term survival rate. After surgery, I had more/different chemo to attack anything 'floating around' in my body. A CT scan was then done and 'nothing' showed up but I had radiation to target the area that had had the cancer as afurther back-up.

    You have to do what your "small little voice" tells you - but for me. I will fight as aggressively as I can in all ways possible.
  • Mama G
    Mama G Member Posts: 762
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    Rague said:

    We're never cancer free -
    We're never cancer free - there may be No Evidence of Disease but we are never 'cured'!

    The protocol is different for different cancers - all breast cancers are not the same. In my case - I did chemo first to try to shrink and get margins before surgery - which we did. I have Inflammatory BC (have as in though there is No Evidence of Disease at this time the potential is fairly high that it can/will show up somewhere else). It is a very aggressive form and does not have a great long term survival rate. After surgery, I had more/different chemo to attack anything 'floating around' in my body. A CT scan was then done and 'nothing' showed up but I had radiation to target the area that had had the cancer as afurther back-up.

    You have to do what your "small little voice" tells you - but for me. I will fight as aggressively as I can in all ways possible.

    I felt just like you did
    and went to talk to the radiologist beforehand. She explained to me that the first 3 places that cancer tends to grow back are the scar area from the surgery, the lymph nodes in the neck area and the lymph nodes under the arms. By radiating them you are almost positively NOT allowing that to happen! So then I asked her where the #4 place was and she said lungs. So we just have to be very vigilant about that!
    That talked me right into it and made me very happy to do it!
  • Rague
    Rague Member Posts: 3,653 Member
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    Mama G said:

    I felt just like you did
    and went to talk to the radiologist beforehand. She explained to me that the first 3 places that cancer tends to grow back are the scar area from the surgery, the lymph nodes in the neck area and the lymph nodes under the arms. By radiating them you are almost positively NOT allowing that to happen! So then I asked her where the #4 place was and she said lungs. So we just have to be very vigilant about that!
    That talked me right into it and made me very happy to do it!

    According to my PA, the most
    According to my PA, the most likely place for IBC to decide to show up later is the colon. My "poop smear" test showed no problems so we're waiting til my "Well Woman" appointment in Aug to have a colonoscopy done to get a baseline.
  • carkris
    carkris Member Posts: 4,553 Member
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    Rague said:

    According to my PA, the most
    According to my PA, the most likely place for IBC to decide to show up later is the colon. My "poop smear" test showed no problems so we're waiting til my "Well Woman" appointment in Aug to have a colonoscopy done to get a baseline.

    I had a local recurrence a
    I had a local recurrence a year out from my first mastectomy, very scary indeed. then had radiation. they know from your pathology how likely it is for the cancer to return either locally or systemically. and make recomendations. cancer is too tricky to deal with, my first cancer was 8mm with no nodes. so I personally need to know I have done everything I can to be at peace. ditto to all the above.
  • Eil4186
    Eil4186 Member Posts: 949
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    Even though the test don't
    Even though the test don't show any obvious signs of cancer, there could still be microscopic metastasis elsewhere in the body. There could be some stray cells left in the chest area. Tests can't detect individual cells. No doctor can guarantee he/she was able to remove every last cancer cell.

    I had stage 1 cancer. I had a lumpectomy and sentinal node biopsy. Lymphnodes were clear with no sign of spread. But since the cancer was invasive, there is no way to know if some cancer cells made it to a blood vessel or not. Also even though my sentinel node was clear, cells could have jumped over the sentinal node to a node further up the chain. If even one cell was able to travel through your body via a blood vessel or lymphnode, your cancer could spread eventaly. I had 8 cycles of chemo and partial breast rdiation.

    Cancer is a horrific disease. If it comes back, a cure is usually not an option. Most will have to live with it at that point. My Aunt's breast cancer came back and she fought it for about 5yrs and suffered horribly before her death.

    Why in the world would you not want to do EVERYTHING possible to prevent a recurrence? You said it makes no sence to treat a cancer that is gone. What you need to understand is, NO doctor can or will tell you that your cancer is gone and you are cured. Not with breast cancer. There is a woman in my support group who had a mastectomy 12 years ago. Supposedly cancer free. Recently her breast cacner recurred in her rib bones. Now she is stage 4. Please don't be so hasty. Your docs have worked with many breast cancer patients. They know of what they speak.
  • Rague
    Rague Member Posts: 3,653 Member
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    Eil4186 said:

    Even though the test don't
    Even though the test don't show any obvious signs of cancer, there could still be microscopic metastasis elsewhere in the body. There could be some stray cells left in the chest area. Tests can't detect individual cells. No doctor can guarantee he/she was able to remove every last cancer cell.

    I had stage 1 cancer. I had a lumpectomy and sentinal node biopsy. Lymphnodes were clear with no sign of spread. But since the cancer was invasive, there is no way to know if some cancer cells made it to a blood vessel or not. Also even though my sentinel node was clear, cells could have jumped over the sentinal node to a node further up the chain. If even one cell was able to travel through your body via a blood vessel or lymphnode, your cancer could spread eventaly. I had 8 cycles of chemo and partial breast rdiation.

    Cancer is a horrific disease. If it comes back, a cure is usually not an option. Most will have to live with it at that point. My Aunt's breast cancer came back and she fought it for about 5yrs and suffered horribly before her death.

    Why in the world would you not want to do EVERYTHING possible to prevent a recurrence? You said it makes no sence to treat a cancer that is gone. What you need to understand is, NO doctor can or will tell you that your cancer is gone and you are cured. Not with breast cancer. There is a woman in my support group who had a mastectomy 12 years ago. Supposedly cancer free. Recently her breast cacner recurred in her rib bones. Now she is stage 4. Please don't be so hasty. Your docs have worked with many breast cancer patients. They know of what they speak.

    At this time - there is no
    At this time - there is no CURE for cancer!
  • Rague
    Rague Member Posts: 3,653 Member
    Options
    Eil4186 said:

    Even though the test don't
    Even though the test don't show any obvious signs of cancer, there could still be microscopic metastasis elsewhere in the body. There could be some stray cells left in the chest area. Tests can't detect individual cells. No doctor can guarantee he/she was able to remove every last cancer cell.

    I had stage 1 cancer. I had a lumpectomy and sentinal node biopsy. Lymphnodes were clear with no sign of spread. But since the cancer was invasive, there is no way to know if some cancer cells made it to a blood vessel or not. Also even though my sentinel node was clear, cells could have jumped over the sentinal node to a node further up the chain. If even one cell was able to travel through your body via a blood vessel or lymphnode, your cancer could spread eventaly. I had 8 cycles of chemo and partial breast rdiation.

    Cancer is a horrific disease. If it comes back, a cure is usually not an option. Most will have to live with it at that point. My Aunt's breast cancer came back and she fought it for about 5yrs and suffered horribly before her death.

    Why in the world would you not want to do EVERYTHING possible to prevent a recurrence? You said it makes no sence to treat a cancer that is gone. What you need to understand is, NO doctor can or will tell you that your cancer is gone and you are cured. Not with breast cancer. There is a woman in my support group who had a mastectomy 12 years ago. Supposedly cancer free. Recently her breast cacner recurred in her rib bones. Now she is stage 4. Please don't be so hasty. Your docs have worked with many breast cancer patients. They know of what they speak.

    At this time - there is no
    At this time - there is no CURE for cancer!
  • susie09
    susie09 Member Posts: 2,930
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    pitt said:

    Radiation actually does a
    Radiation actually does a much more significant job of reducing recurrence than chemo. I believe the stats were 65% success with radiation. Why would you not want that? If you were to have chosen only one, I would have gone with the radiation. It doesn't hurt; it kills any remaining stray cells; and it prevents recurrence at a much greater rate than chemo. I realize this is a lot to digest, but when it's your life in question, doesn't it make sense to listen to the experts and do all that you can to live a long and healthy life? Pitt

    Pitt is right. Rads have a
    Pitt is right. Rads have a high success rate over chemo. I have seen several on here that had a recurrence, and, had no radiation treatments. Do all that you can to kill the beast. Rads are very doable. Good luck to you!
  • heidijez
    heidijez Member Posts: 441
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    first of all, thank you ms.
    first of all, thank you ms. sunshine for asking this question. and secondly, thank you to all you lovely ladies who took time to respond. this post certainly cleared up some questions/doubts that i have. i have ibc, finished chemo on april 1 - had not heard from my surgeon, when i called with questions, her nurse was very snippy with me. i took matters into my own hands and sought out another surgeon, i meet with him tomorrow.

    i do understand that we are all different, and our situations are different, but there is nothing better than hearing from women who have experienced what you are going through. i've said it before, but if definitely bears repeating, this is an INCREDIBLE site.