Help!! No rad/chemo after mastectomy

dep
dep Member Posts: 17
edited March 2014 in Breast Cancer #1
I was diagnosed in 1995 with the big C. I went for my yearly checkup last month and my oncologist broke this news: "Now what we do with patients like yourself is radiation and/or chemotherapy after mastectomy but I don't go back and re-do the ones like yours." I felt like why not go back and do patients like me? If there is a better chance of survival? Has anyone heard this from their doctors? Dep

Comments

  • isaiah4031
    isaiah4031 Member Posts: 240
    #2
    Hi,
    My mom had a mastectomy after breast cancer about 3 years. She wasn't given an option and did not have any chemo or radiation. When I was diagnosed, the onc said that the survival rate was about the same...no significant difference between lumpectomy plus chemo and radiation, and mastectomy without either. Sadly, my mom just had a recurrance in the lymph nodes and begins her chemo/radiation tomorrow. She is now second guessing her earlier treatment. I know that I was pretty insistant on having the chemo and I am glad I did. Even if it comes back, I'll know I did everything I could. Maybe a second opinion from a different onc would help ease your mind or give you some alternate choices. What stage? You are an 8 year survivor! That says a lot! Congrats on that!
    Love, Jayne
  • dep
    dep Member Posts: 17
    #3
    isaiah4031 said:

    Hi,
    My mom had a mastectomy after breast cancer about 3 years. She wasn't given an option and did not have any chemo or radiation. When I was diagnosed, the onc said that the survival rate was about the same...no significant difference between lumpectomy plus chemo and radiation, and mastectomy without either. Sadly, my mom just had a recurrance in the lymph nodes and begins her chemo/radiation tomorrow. She is now second guessing her earlier treatment. I know that I was pretty insistant on having the chemo and I am glad I did. Even if it comes back, I'll know I did everything I could. Maybe a second opinion from a different onc would help ease your mind or give you some alternate choices. What stage? You are an 8 year survivor! That says a lot! Congrats on that!
    Love, Jayne

    Jayne - Thanks for the advice. Now I heard that the 5 year survival rate has been upped to 7-8 years as the benchmark to achieve. 4 of my friends who were diagnosed 2 years before me all had recurrences recently. How are you and your Mom doing? MaryAnn
  • anjolee
    anjolee Member Posts: 6
    #4
    hi mary ann i had a little trouble understanding your concern my name is angela and i an an 11 year survivor with metastisies after 9years i did not have chemo or radiation untill the metastisies i did have breast reconstruction in 1992 i would like to help if i can but dont understand what you are asking
  • dep
    dep Member Posts: 17
    #5
    anjolee said:

    hi mary ann i had a little trouble understanding your concern my name is angela and i an an 11 year survivor with metastisies after 9years i did not have chemo or radiation untill the metastisies i did have breast reconstruction in 1992 i would like to help if i can but dont understand what you are asking

    Anjolee - Let me try and explain. Maybe I am not understanding it myself, I don't know. Tell me what you think. I was diagnosed in 1995 with Stage I bc. I had a choice of lumpectomy with rad/chemo or mastectomy with Tamoxifen (no radiation or chemo). My onc wanted to do the lumpectomy with RT and chemo. My surgeon said no way because the cancer had spread way past the margins of resection so a mastectomy was recommended. I had reconstruction too by the way, the TRAM. Anyway, I went for my yearly checkup six months ago (I am 7 years out( and he told me if I were to present now with the same thing as I did in 1995 the recommended treatment would be mastectomy with radiation and chemo afterward. In other words if I was just diagnosed today the treatment would be mastectomy with radiation and chemotherapy not just a mastectomy and Tamoxifen. Does this make sense?? I felt like I should be offered the newest treatment now (but I didn't say anything to him because what he said shocked me) but he said he didn't go back and re-do (give RT/Chemo) to the ones diagnosed back when I was. Let me know what ya think. I appreciate your response. Also, where did your mets occur? MaryAnn
  • isaiah4031
    isaiah4031 Member Posts: 240
    #6
    dep said:

    Jayne - Thanks for the advice. Now I heard that the 5 year survival rate has been upped to 7-8 years as the benchmark to achieve. 4 of my friends who were diagnosed 2 years before me all had recurrences recently. How are you and your Mom doing? MaryAnn

    Hi Mary Ann,
    Mom had first chemo today and tolerated it well. The only shocker was her co-payment. She has to pay $1,000 every treatment! (That included the chemo and the shots she has to take for 9 days to combat low blood counts) I couldn't believe it because no one had told her ahead of time...not even an estimation. Anyway, no credit cards or payment plan available. Thankfully, between her, my sister and myself, it'll be okay, but I was thinking of how others might not be so fortunate! I belong to an HMO which is wonderful. People often criticize them, but my HMO has been great through all the 16 years I've been with them. And now through the breast cancer treatments...I don't plan to ever switch. Anyway, enough about that. Thanks for asking about Mom. I hope you get the answers you are seeking. I am praying for you. Take care.
    Love, Jayne
  • anjolee
    anjolee Member Posts: 6
    #7
    dep said:

    Anjolee - Let me try and explain. Maybe I am not understanding it myself, I don't know. Tell me what you think. I was diagnosed in 1995 with Stage I bc. I had a choice of lumpectomy with rad/chemo or mastectomy with Tamoxifen (no radiation or chemo). My onc wanted to do the lumpectomy with RT and chemo. My surgeon said no way because the cancer had spread way past the margins of resection so a mastectomy was recommended. I had reconstruction too by the way, the TRAM. Anyway, I went for my yearly checkup six months ago (I am 7 years out( and he told me if I were to present now with the same thing as I did in 1995 the recommended treatment would be mastectomy with radiation and chemo afterward. In other words if I was just diagnosed today the treatment would be mastectomy with radiation and chemotherapy not just a mastectomy and Tamoxifen. Does this make sense?? I felt like I should be offered the newest treatment now (but I didn't say anything to him because what he said shocked me) but he said he didn't go back and re-do (give RT/Chemo) to the ones diagnosed back when I was. Let me know what ya think. I appreciate your response. Also, where did your mets occur? MaryAnn

    hi mary ann if i am understanding you correctly in 1995 you took your surgeons advice of mastectomy and tamoxafin and you are now wondering why he says that today he would recomend rad/chemo.it does make sense to me why he would say that today.i was diagnosed with stage 1/2 cancer.there was no evidence of disease past the resection edge.i went with mastectomy and tamoxafin.i also had tram reconstruction.except that my surgeon wanted me to have chemo and radiation and my oncologist said he didnt think i needed to go that rought.of course i got a few oppinions and a lot of our decisions have to be made with our gut feeling.i went with my oncologist not only because this is his area of expertise and what we discussed made a lot of sense to me i have no regrets and here i am 11 years later.do you have a good oncologist that you can talk out your concerns with?of coarse since the new diagnosis of metastises to the bone i have had o long coarse of radiatin and 6 months of chemo. i now take femarra as the tamoxafin is no longer an option for me.i am doing great and plan on being around at least another 11 years.if you have any specific questions mary ann i would be happy to answer them and certainly give you my opinion if you would like it.
  • dep
    dep Member Posts: 17
    #8
    anjolee said:

    hi mary ann if i am understanding you correctly in 1995 you took your surgeons advice of mastectomy and tamoxafin and you are now wondering why he says that today he would recomend rad/chemo.it does make sense to me why he would say that today.i was diagnosed with stage 1/2 cancer.there was no evidence of disease past the resection edge.i went with mastectomy and tamoxafin.i also had tram reconstruction.except that my surgeon wanted me to have chemo and radiation and my oncologist said he didnt think i needed to go that rought.of course i got a few oppinions and a lot of our decisions have to be made with our gut feeling.i went with my oncologist not only because this is his area of expertise and what we discussed made a lot of sense to me i have no regrets and here i am 11 years later.do you have a good oncologist that you can talk out your concerns with?of coarse since the new diagnosis of metastises to the bone i have had o long coarse of radiatin and 6 months of chemo. i now take femarra as the tamoxafin is no longer an option for me.i am doing great and plan on being around at least another 11 years.if you have any specific questions mary ann i would be happy to answer them and certainly give you my opinion if you would like it.

    Anjolee - After 11 years what were your symptoms of bone mets? My onc is considered to be the best in the area. I used to work for him and the others in the practice are very good also. It's called Riverview Cancer Care in Niskayuna, NY. I am thinking of changing to the woman that is on staff but the downfall is you have to wait and wait because she spends so much time with every patient. I've never been to a female doctor but from what everyone tells me they are more thorough and more understanding. Tell me about yourself. How did you learn you had bone mets and at what age? Thanks.......MaryAnn
  • anjolee
    anjolee Member Posts: 6
    #9
    dep said:

    Anjolee - After 11 years what were your symptoms of bone mets? My onc is considered to be the best in the area. I used to work for him and the others in the practice are very good also. It's called Riverview Cancer Care in Niskayuna, NY. I am thinking of changing to the woman that is on staff but the downfall is you have to wait and wait because she spends so much time with every patient. I've never been to a female doctor but from what everyone tells me they are more thorough and more understanding. Tell me about yourself. How did you learn you had bone mets and at what age? Thanks.......MaryAnn

    mary anni am 54 yrs old was diag.at 44 yrs.had mast.and tram same year in1992.was good for 9 yrs.was experiencing pain in my shoulder and then my legs[severe pain]thought it was work related as i was working full time as dept.supervisor at kohls dept.store here in Delafield,Wisconsin.finally went to see an orthopedic oncologist who discovered the metas.this was Dec.2000.i had surgery in feb.2001.a rod was put in my right leg to help support the leg as the bone had deteriated and they were afraid of fracture.the cancer had spread to my legs shoulders 2ribs part of my spine.you say you are considering changing your doc.i also have a very fine oncologist.i have had him the full 11 years.i also have long waiting times most of the time but i am ok with this because it is because he takes the time with each patient and i see this as a good thing.we have developed a wonderful relationship over the years.i feel i can tell him anything i am feeling ask any questions i have know matter how stupid some of them feel at the time.so to me it is well worth the wait.the only way you are going to know if its worth it to you is if you give her a try.so tell me a little about yourself.if there is anything else i can help with or discuss let me know.
  • dep
    dep Member Posts: 17
    #10
    anjolee said:

    mary anni am 54 yrs old was diag.at 44 yrs.had mast.and tram same year in1992.was good for 9 yrs.was experiencing pain in my shoulder and then my legs[severe pain]thought it was work related as i was working full time as dept.supervisor at kohls dept.store here in Delafield,Wisconsin.finally went to see an orthopedic oncologist who discovered the metas.this was Dec.2000.i had surgery in feb.2001.a rod was put in my right leg to help support the leg as the bone had deteriated and they were afraid of fracture.the cancer had spread to my legs shoulders 2ribs part of my spine.you say you are considering changing your doc.i also have a very fine oncologist.i have had him the full 11 years.i also have long waiting times most of the time but i am ok with this because it is because he takes the time with each patient and i see this as a good thing.we have developed a wonderful relationship over the years.i feel i can tell him anything i am feeling ask any questions i have know matter how stupid some of them feel at the time.so to me it is well worth the wait.the only way you are going to know if its worth it to you is if you give her a try.so tell me a little about yourself.if there is anything else i can help with or discuss let me know.

    Anjolee - Thanks for your last reply. You would think after 11 years you would have been cured. Not the case though, huh? I am 52, dx. 1995 with Stage I bc, no lymph nodes involved. I had reconstruction a year later, TRAM. I had pain in my ribs, they did a bone scan and then a biopsy (god, that was the worst surgery) and it turned out to be inflammation. He got the wrong rib the first time so another surgery had to be done besides. Oh well, it's over. Two years ago I was having pain in my implant wall so it turned out that it had formed scar tissue and another one had to be put in. I found out this is common and it might happen again. I go every year for a checkup and blood work always comes out clean. The only thing now is that I have been having right sided neck pain only when I turn my head for about a year. I went to a chiropractor and he wouldn't do anything until he had results of the x-rays. I haven't had the x-rays yet. If they come out okay then I will see if the chiropractor can help with this neck pain. It's probably wear and tear from old age, ya know. I am married, have one daughter and two boys (our 2 shih-tzus) and we love to travel everywhere in the U.S. Always looking for a pet-friendly vacation rental if you know of any by the ocean. Where do you live. I live near Albany, NY. Your turn! Mary Ann
  • jeancmici
    jeancmici Member Posts: 665 Member
    #11
    dep said:

    Anjolee - After 11 years what were your symptoms of bone mets? My onc is considered to be the best in the area. I used to work for him and the others in the practice are very good also. It's called Riverview Cancer Care in Niskayuna, NY. I am thinking of changing to the woman that is on staff but the downfall is you have to wait and wait because she spends so much time with every patient. I've never been to a female doctor but from what everyone tells me they are more thorough and more understanding. Tell me about yourself. How did you learn you had bone mets and at what age? Thanks.......MaryAnn

    Mary Ann,

    Since your oncologist was your employer at one time, he probably thought you might find the information he gave you interesting. Certainly he did not mean to upset you or indicate you got less than good treatment - you got what was considered the best THEN. Chemo after surgery is usually only done at the most - up to 12 weeks after - and usually 4 - 6 weeks after. It would make no sense for all the women who had acceptable treatment at the time of their cancer to pick up chemo at this late date. Hopefully you will never have mets and if you do , then it is the time for chemo.

    Wouldn't it have been a good idea to have ASKED HIM WHY he mentioned this to you. My guess - it was just to update you on current treatment. Hope this helps.

    Jean
  • anjolee
    anjolee Member Posts: 6
    #12
    dep said:

    Anjolee - Thanks for your last reply. You would think after 11 years you would have been cured. Not the case though, huh? I am 52, dx. 1995 with Stage I bc, no lymph nodes involved. I had reconstruction a year later, TRAM. I had pain in my ribs, they did a bone scan and then a biopsy (god, that was the worst surgery) and it turned out to be inflammation. He got the wrong rib the first time so another surgery had to be done besides. Oh well, it's over. Two years ago I was having pain in my implant wall so it turned out that it had formed scar tissue and another one had to be put in. I found out this is common and it might happen again. I go every year for a checkup and blood work always comes out clean. The only thing now is that I have been having right sided neck pain only when I turn my head for about a year. I went to a chiropractor and he wouldn't do anything until he had results of the x-rays. I haven't had the x-rays yet. If they come out okay then I will see if the chiropractor can help with this neck pain. It's probably wear and tear from old age, ya know. I am married, have one daughter and two boys (our 2 shih-tzus) and we love to travel everywhere in the U.S. Always looking for a pet-friendly vacation rental if you know of any by the ocean. Where do you live. I live near Albany, NY. Your turn! Mary Ann

    maybemary ann i am divorced.i live in hartland wisconsin with my soon to be 17 year old son.i have a daughter who is 24 and married and a wonderful 19 month old grandson.this is lake country here.beautiful.im originally from England.been here since 1963.maybe you need to invest in a new bed pillow.i had that neck pain at one time and went and bought one of those foam rubber pillows[or whatever they are made out of.anyway i gave it a shot thinking that it wouldnt work because it was so flat but the first time i slept on it it was the best nights sleep i had in a long time and it took care of the pain.it was great.angela
  • dep
    dep Member Posts: 17
    #13
    jeancmici said:

    Mary Ann,

    Since your oncologist was your employer at one time, he probably thought you might find the information he gave you interesting. Certainly he did not mean to upset you or indicate you got less than good treatment - you got what was considered the best THEN. Chemo after surgery is usually only done at the most - up to 12 weeks after - and usually 4 - 6 weeks after. It would make no sense for all the women who had acceptable treatment at the time of their cancer to pick up chemo at this late date. Hopefully you will never have mets and if you do , then it is the time for chemo.

    Wouldn't it have been a good idea to have ASKED HIM WHY he mentioned this to you. My guess - it was just to update you on current treatment. Hope this helps.

    Jean

    Jean - I was dumbfounded I guess. I couldn't speak at that moment. The next time I will go into more depth with him. He loves to talk. Thank you for your insight, though, you may have hit the nail on the head!! Thanks, big hugs and take care!! Mary Ann
  • dep
    dep Member Posts: 17
    #14
    anjolee said:

    maybemary ann i am divorced.i live in hartland wisconsin with my soon to be 17 year old son.i have a daughter who is 24 and married and a wonderful 19 month old grandson.this is lake country here.beautiful.im originally from England.been here since 1963.maybe you need to invest in a new bed pillow.i had that neck pain at one time and went and bought one of those foam rubber pillows[or whatever they are made out of.anyway i gave it a shot thinking that it wouldnt work because it was so flat but the first time i slept on it it was the best nights sleep i had in a long time and it took care of the pain.it was great.angela

    Anjolee - It's funny but I don't sleep with a pillow; I just push it to the side because it makes by head too high. People laugh when I tell them but it's always been that way. Anyway, please keep me up-to-date on your progress. You have made me feel a lot better and I thank you. Big hugs! Mary Ann
  • DDenning
    DDenning Member Posts: 3
    #15
    I had a modified radical mastectomy in August 2002. No cancer found in the lymph nodes so I was told that I did not need any further treatment. Don't know if that was the right thing or not, but I was very thankful; however, my shoulder and my arm have really bothered me since the surgery. I asked about having a cat scan to make sure that the cancer had not gotten out of the breast and was told that my insurance company would have a fit if a cat scan was ordered. So please make sure that you find a doctor that is more interested in you than in insurance companies.

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