Deciding if I'm going to take treatment after lumpectomy

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  • moth
    moth Member Posts: 4,800
    edited August 2018

    just a note that mastectomy really only prevents a local recurrence. It doesn't prevent a metastatic recurrence. And according to the research I was shown, a lumpectomy + radiation has the same overall survival outcomes as a mastectomy.

    If you have a mastectomy & your lymph nodes are clear, then you won't be prescribed radiation. If lymph nodes are positive, then radiation will be prescribed anyway so a mastectomy doesn't always mean you can avoid rads.

    The statistics show that for most early stage breast cancers surgery alone (either mastectomy or lumpectomy+ rads) will lead to 70-90+% survival rates in 5-15 years. Flip that around and somewhere between 1 in 10 and 3 in 10 women will develop a metastatic recurrence and die. The goal of chemo & hormone treatments are to reduce those odds of metastatic recurrence.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Hi Viewfinder, just thought I'd post some additional info. since as you know I wrestled with these issues quite a bit.

    I'm not surprised that your doctor recommended lumpectomy for you instead of a masectomy. Your tumor is small and early stage, and masectomy is a much more difficult surgery. At age 70 the risk of complications would be significant.

    I respect Yaniza's decision, but taking Tamoxifen or an AI can significantly reduce the risk of recurrence, no matter what type of surgery you choose. In fact for most women ithat daily pill reduces recurrence risk (of both breast cancer and spread elsewhere in the body) by 50 percent. In contrast, the risk of it causing uterine cancer is less than 1 percent in post-menopausal women. And because the first sign is visible enlargement of the endometrial lining, regular visits to a good OB/GYN can catch it early even in those rare cases.

    So no, Viewfinder, I don't think you made a mistake.

    Oneof7, if you don't trust your MO after that August 24 visit, please arrange for a second opinion, or even a third, until you find someone you do trust and can have a thorough conversation with. This is a complex field, and a good oncologist studies the latest research in ways we never could. I also recommend a very short and helpful book called "Navigating Breast Cancer," by a former nurse named Lillie Shockney. It puts some very complicated issues into simple language and was immensely helpful to me.

    Best wishes to all of you.



  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    Thanks again, Georgia1. You always offer very helpful and reasoned insights. I see the radiation oncologist this Wednesday. I think the results from the Oncotype DX Test should be available by then. At least, I hope so.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    I saw the oncologist today and decided I'm going to take radiation. After that, I'll try hormones and see if I have any serious negative side effects. If so, I will stop.

    When I told the doctor that my sister was also diagnosed with breast cancer, she set me up for a Telegenetics consult in November. Not sure what that's all about but I'll learn soon enough. So the next steps in my journey are soon to begin.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Thank you for taking the time to let us know, and best wishes to you and your sister. There is probably a "starting radiation in September" group starting and you may want to check in there from time to time. I know having a "posse" here really helped me as I was doing radiation treatments.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2018

    Im joining this conversation a little late. I also had an "ugh, no way" reaction to the idea of radiation and hormone blockers. Three things changed my mind: 1) there was a speck on my sentinal node, so hell yes to radiation. 2) My Mom had breast cancer at the age of 85 and had a lumpectomy plus radiation, which she basically sailed through with daily zapping for five weeks. She got tired, but she was driving to another town every day for her sessions. She lived to 97 with no recurrence. If she could do that at her age, I can cope in my late 60s. 3) Another unrelated cancer was found, this one on my kidney. Since I'd already had endometrial cancer and several skin cancers (luckily, just basal cell), I figure I'm a bit of a cancer magnet and need to do all I can to keep that crap away from me!

    The radiation is on hold until the nephrectomy is done and I'm at least partly healed, so this is more drawn out than I would have liked. But, the doctors are all staying in touch with each other, so I trust them to prioritize what needs to be done. No decision yet on which hormone blockers I'll get, since I've had a hysterectomy, and I already have osteoporosis - but there's time for that decision later.

    Anyway, my point is that I think it's a good idea to throw as many preventive treatments at cancer as possible. No guarantees that they'll work, but I prefer to stack the odds.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    Thank Georgia1 for the heads up about a Starting in September group. I'll look for it.

  • bella2013
    bella2013 Member Posts: 489
    edited September 2018

    Alice, when is your kidney surgery

  • Oneof7
    Oneof7 Member Posts: 59
    edited September 2018

    pupmom

    I had a doctor misdiagnose my gall bladder. She was with a gastorentrenology group. My father lost half a limb because rehab didn't know go to care for his neuropathy. Unfortunately, It happens. Nonetheless i do agree that a few bad apples reflect on the entire group

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2018

    Bella, the nephrectomy is scheduled for September 18th. Fall is my favorite season, and I was looking forward to having everything done in time to enjoy some road trips. Pooey! Maybe I'll get a long enough healing time scheduled before radiation, so I can do some quick get-aways before that dreary four weeks starts. DH and I live for our road trips, especially the long trips in the fall, and I feel so bad for him that our plans are on hold. It's annoying having to reset priorities from fun to medical this & medical that for several months. 👎😡

  • thrdage
    thrdage Member Posts: 12
    edited September 2018

    Yours sounds like mine...

    I'm 74 and was diagnosed April 2, stage 1, ductal, hormone receptor positive, HER2 neg. So I had a lumpectomy and followed up with 20 radiation treatments (5 da/wk x 4 wks) that ended 2 weeks ago. The radiation was a breeze except for a pretty substantial rash that is now almost cleared up. Met with Onco.NP this week and doc recommends Aromatase. I'm very low income and tried comparing costs. Tamoxifen is cheaper but I'm going to see if I can get low cost, generic aromatase from Canada. I'm pretty optimistic and up-beat and happy to share more if you wish.

  • LMK440
    LMK440 Member Posts: 6
    edited October 2018

    Hi, I've had a lumpectomy for DCIS, left, low grade, clean margins. I am 65 and considering no more treatment. Reading a lot about over treatment and that the future for stage 0 DCIS could be careful monitoring. Radiation to left side means heart + lungs and other possible damage. Right now I am disease free and odds are great I will stay that way. Hard to weigh risk/benefit of rads and possible bone and other problems with Arimidex, which is what they have recommended. Anyone else considering this in my situation - or have gone this route? Thanks

  • goglogo
    goglogo Member Posts: 4
    edited October 2018

    Hi Viewfinder. This is my first time here as well (my second post). I had a lumpectomy and was told initially that I would need radiation and then Tamoxifen. And then they changed their minds and wanted me to do chemo. I had a small 1 inch mass in my left breast, dcis in my left breast and one of my lymph nodes was bad under that same arm. I trusted the site where I had the surgery done and relied heavily on their opinion. They assured me no chem was needed. I pondered on it for a minute and did not want to take IV chemo. Although Tamoxifen is still a form of chemo it is not as severe. The place where I had my surgery created the Onco type test and I had them do one on me. It revealed that he likelihood of the cancer returning was in the low percentile and the effectiveness of chemo for me was not good (also low percentile).

    In the group of women with the same diagnosis of myself and the same treatment - I discovered I was the only one who had to take Tamoxifen. They were all in their seventies as well but our diagnosis and treatment were the same except that part. I felt bad because I didn't want to take anything either. But, I still have twenty years to go to reach their age and the doctors were seeking protection for me.


    Ultimately the choice is always going to be yours. I'm not sure about the radiation for you, but you should not have to do any chemical therapies. The radiation is required after surgery to protect that site and area (especially since you don't want to take oral therapy). You are the most important part of your cancer team. Don't be afraid to let your voice be heard or even to 'respectively decline'.


  • goglogo
    goglogo Member Posts: 4
    edited October 2018

    Hi LMK440


    I think it matters where you have your radiation done. I wish I had my radiation in the same place I had the surgery but it was too far for me to commute each day until it was done.

    I think I healed nicely after radiation but It takes a toll on your body. I have sob and pain now in the middle of my chest due to the radiation. If I carry anything at all it sets the pain off and I am out of breathe. I feel like they cracked some ribs or did some other damage that I won't find out about until I'm older. Every time I try to point it out to them, they say 'that's not us'. I know it didn't hurt before radiation.

    My lumpectomy was left sided as well. Its a scary process. The surgery was the easiest part. The radiation and the Tamoxifen have proven to be a chore for me and my body does not like either. But hey - I'm alive.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2018

    LMK440, it is indeed a personal decision, weighing the pros and cons. Sometimes getting a second medical opinion at this time can be helpful.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    LMK440, my surgery went well. No residual pain except under my left arm where the nodes were removed. Radiation went well too though I was extremely fatigued after the very first treatment. I would get home and spend the rest of the day in bed or on the sofa and couldn't go anywhere. Fortunately, I had no fatigue in the morning so I was able to drive to and from my treatment. My radiation burn is healing well: I put cream on it 3-4 times a day and still don't wear a bra unless I go out...on of the advantages of being retired.

    As I've mentioned, so far so good on Anastrozole, just minor stuff that I can live with.

  • LMK440
    LMK440 Member Posts: 6
    edited October 2018

    Hi goglogo, thanks for your info. Did your radiation center off a set up where you were on your stomach so gravity helped pull breast away from your body? Did they have you hold your breath? It might be that your rad treatment will differ from mine because of the node involvement. Sorry to hear you still have pain. I would try and make them address it. I have Kaiser in CA so all treatment "in house".

    Lesley

  • Jenflorida
    Jenflorida Member Posts: 13
    edited December 2018

    New to this forum but wanted to share my history.

    Dx left breast ca age 65. Had lumpectomy. Neg lymph nodes. Radiation 7 weeks then Tamoxifen 5 years.

    In 2014 age 80 I started having back pain. Dx breast cancer Mets to the bones.

    Aridimex 1 1/2 yes. Quit working. Then Ibrance and Fasoldex for 2 years . Quit working.

    Started Afinitor with the fasoldex few months ago.

    You can read list of SE with Afinitor. Had them all. Able to handle but 1 month ago started having swollen feet and ankles. Painful to walk.

    Have decided to tell my onc when I see her in 2 weeks can not tolerate so will need to quit Afinitor.

    Could still take monthly injection of Fasoldex and Xgeva every 3 months.

    Future in question for me as I know I do need the Afinitor. According to my doc there are no other choices. But quality of life important no matter how long or short that will be.

    This is just one woman's story. Would love to hear from older women who developed breast Mets and how you are doing

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