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After BC Treatment, Personalized Survivorship Care Needed

After Breast Cancer Treatment, Personalized Survivorship Care Needed
May 18, 2021

Survivorship care plans need to be personalized to meet breast cancer survivors' differing needs. Read more...

Comments

  • betrayal
    betrayal Member Posts: 1,972
    edited May 2021

    Was asked to assess stress at RO and MO appointments and reported that I was very stressed. When there was no discussion of what I had reported by either physician, I opted not to waste my time nor money (there is a charge to insurance) on a survivorship meeting. I respectfully declined and have no regrets. So far the only physician who has not been caught in a lie is my MO. Both the RO and BS were liars.

  • doubting-cw
    doubting-cw Member Posts: 9
    edited May 2021

    I haven't been on this board for awhile but I do read my favorite topics. Although I wasn't in a "Survivorship Care" specific program my circumstances were about the same as yours as far as the "care team" giving conflicting information. I found many inconsistent answers to my questions from SO and RO. I am considered non-compliant because of refusal to have chemo. I felt I was harassed at each follow-up. My SO even joined the force to get me to agree to chemo. She was the one that told me after waking from surgery that I don't need further treatment and went to tell my waiting boyfriend the same (I wanted another person to hear it as I just woke up from surgery. I asked that she repeat this to him and she did). Then the big turnaround with ONCO-DX. My SO appointment shortly after the report came back (she was not aware of report being done) and I told her I went from no treatment needed to all treatment needed. She was stunned. Left the room and came back to convince me to get radiation (which should come after chemo) WHAT THE ----? Oh and Mo said I would need the "Red Devil" 2nd opinion MO said "Oh no" when I asked if I have chemo does it entail so called Red Devil. And only 4 rounds.

    So I have went through radiation and AI. Only out of fear. Yes they do lie.

  • cardplayer
    cardplayer Member Posts: 2,051
    edited May 2022

    Treatment and all surgeries are complete. No evidence of cancer. I see my MO ever 6 months, my breast surgeon every 6 months. The fatigue is there. AI joint pain is there. Word salad and chemo brain. I keep active, see my friends and family, go to support group.

    My Mother didn’t survive her battle with BC. My Grandmother and Aunt did. Will I be a survivor? The worry is always there.

  • jons_girl
    jons_girl Member Posts: 441
    edited May 2022

    doubting and others here:

    My BS I really liked. As I recall, she told me that my cancer most likely would return if I didn't have rads and take hormone blockers. Shealso told me something like, 'we are constantly learning new information, unlearning information and there is still a lot we don't know about cancer'. She had been practicing at that time over 30 years. That was in 2017.

    But my MO at that time sat down with my hubby and I on our first visit. I told this man that I didn't want to do rads or take hormone blocking drugs. I was nearly at menopause when I was dx and didn't want to be thrown into menopause unnaturally. And I had a very small grade 1(almost grade 2 I think) stage 1 cancer. I told him there aren't many studies on this grade/stage cancer and I didn't want to use all my tools in my cancer fighting toolbox. If it returned I didn't want to have to have a mastectomy.

    After this discussion he said he'd support my decision. But I should be followed. I told him I would have regular diagnostics done. So I go every 6 mo for diagnostics/scans. I don't have him as my MO anymore (his nurses weren't kind to me and he stopped seeing pts and just teaches now at the teaching hospital system I saw him through).

    I nowhave a MO tho who still supports my decision. She regularly checks my blood work and I get scans every 6 mo. So far all is well.

    Something tho that is interesting is after surgery and after my appointment with my MO, when I went back to my BS and told her my MO supported my decision, she said well yes it probably won't return Speaking about my cancer returning That was frustrating to me As I felt like she had not been completely honest with me initially.

    Just sharing my experience here too.

    Blessings to you all!

  • cardplayer
    cardplayer Member Posts: 2,051
    edited May 2022

    Jon's-girl - my tumors (next to each other) were 3.5 inches combine. They weren't seen in the mammogram I had 6 months prior, were not felt by me or my BS and were found by breast MRI. Maybe it wasn't there 6 months before and it was fast growing. I'll never know. I was post menopausal, mid60s. My BS reviewed options with me (mastectomy vs lumpectomy) but I decided on mastectomy. Chemo and targeted treatment is standard for triple positive. Had a left prophylactic mastectomy a year later. Now I need to figure out what comes next. Stay well

  • jons_girl
    jons_girl Member Posts: 441
    edited May 2022

    cardplayer I hope your recovery continues to go well.
    yes I think periodic MRI will be part of my diagnostics post cancer. I think it’s a good modality for catching cancer early.
    Blessings!

  • cardplayer
    cardplayer Member Posts: 2,051
    edited May 2022

    I see my BS today and will ask her about any post treatment screening she recommends for me. I have had a DMX so we’ll see what she suggests.

  • jons_girl
    jons_girl Member Posts: 441
    edited May 2022

    hope the appointment went well. Have a great weekend everyone.

  • lenaaz
    lenaaz Member Posts: 13
    edited August 2022

    Hey can anyone (moderators?) give me advice about FINDING survivorship care if my oncologists AND my primary care doctor both refuse?

    I was treated (chemo, surgery, radiation) at a major center that does NOT do survivorship care for out-of-state patients. I respect that they don't do it, but they left me with major treatment damage, a high risk of recurrence, and ZERO information about next steps. They say it is the responsibility of my primary care doctor now. He says he can't take that responsibility, does not know what I need, and that I will have to find another oncologist. Do people go to oncologists as new patients after they are out of treatment? I am completely baffled.

    I don't know what screening I am supposed to have. I don't know how to take care of my very damaged body. I don't know what damage I just have to accept, and what might improve with treatment. I am also just exhausted and can't believe that I now have to fight for help dealing with damage that was CAUSED BY DOCTORS and to find out if I need screening when I've been told that my risk of metastasized cancer is high. I am hurt,I am angry, and I don't understand what I am supposed to do next.

    I am also struggling because the oncologists office really shamed me for pressing for more help and information. They have been the "authorities" in my life for more than a year now. I accepted terrible treatments on their recommendation. And now they are telling me basically to act as though I never had cancer and just wait until my next routine annual primary care visit. I can't understand the contradiction ... are they right that I should do nothing now? If not, WHERE DO I GO?

    lena

  • muska
    muska Member Posts: 224
    edited August 2022

    Hi Lena, I think your primary care doctor should refer you to an oncologist for follow-up care. What that follow-up care will look like, depends on the specifics of your case, like stage and recurrence risk to give an example.

    Good luck

  • alicebastable
    alicebastable Member Posts: 1,933
    edited August 2022

    It could be that the decision is being driven by your insurance, not the oncologist or facility, since it's out of state.

  • moderators
    moderators Posts: 7,662
    edited August 2022

    Hi Lena!

    We're sorry you find yourself in this situation. You may want to hear the following podcast by Dori Klemanski, a nurse practitioner, that explains what a survivorship care plan is, why it's so important and how to get a survivorship care plan if you don't have one.

    Podcast: Survivorship Care Plans

    Hope this helps!

    The Mods


  • mavericksmom
    mavericksmom Member Posts: 1,042
    edited April 2023

    I received a "Breast Cancer Survivorship Care Plan" in the mail this week from a nurse navigator I never met! It was based only on my recent diagnosis of DCIS with very small IDC. There was absolutely NO consideration for the fact that this was my THIRD new breast cancer in 20 years, I previously had IDC (pre-menopausal) and ILC.

    The plan instructed me to have mammograms, one year after the mammogram that lead to my diagnosis and every 12 months thereafter. I DON'T HAVE ANY BREASTS, I HAD TWO MASTECTOMIES, the second from that same recent diagnosis!

    By sending me that plan, which I neither wanted nor asked for, she caused a rush of bad memories associated with my first two cancers, which affected me so much that the adrenaline rushed through me and kept me fully awake for over 23 hours straight! I did manage to get a two hour nap yesterday, but only slept for one hour the previous night, actually, the same morning from 5-6 am.

    After reading over that plan yesterday, I wrote this NN a one-page letter, sent it snail mail, and hope she stays out of my business in the future. I wasn't mean or rude, but I told her in no uncertain terms how her interference impacted me. I told her not to contact me and please respect my privacy. Worst of all, she sent it to ALL of my doctors in that care plan, doctors that already know everything she wrote. The difference is, those doctors know my COMPLETE breast cancer history, not her snippet of my issues! Now I can't get past her snippet care plan!

    Prior to her interference I was doing fine, especially mentally and emotionally. My doctors set up my next appointment to see them, I was a happy camper and felt comfortable. She derailed all of that! Now I wonder who else will come out of the woodwork and sabotage my medical care?

    Last night, I canceled my appointment I had scheduled with my BS for June. No breasts=No need to see a BS! I actually feel good about this because I do not need a doctor who will only examine me and send me on my merry way! If I have a concern about anything that can be felt, I will get appropriate care.

    I totally believe that I will get breast cancer again in the form of metastasis. For that reason I will stay on Letrozole and see my MO regularly.

    What I am furious about is this so called personal plan WAS NOT AT ALL PERSONAL! Because of that most of what was written didn't apply to me. Why would anyone follow advice from a plan that so clearly did not represent their situation?

    I don't even know what a Nurse Navigator does, but in a world where nurses are in great demand to deliver REAL nursing care, why are they wasting valuable needed care on NN's? I got a packet from a NN at my first appointment with my BS after my biopsy report came back. It stated that if I had any questions to call her phone number. My one and only time where I had a question I called that number only to have it be answered by the hospital's central scheduling dept! That person never heard of the NN I asked for! So not help from her! Actually, I think I got NEGATIVE care from her, due to her derailing what my doctors had set up!

    This morning I feel more impowered than ever! I remembered that I AM IN CHARGE OF MY MEDICAL CARE, NOT A NURSE NAVIGATOR!


  • spookiesmom
    spookiesmom Member Posts: 8,148
    edited April 2023

    Alice, seems I got something similar from a NN at a hospital I wouldn’t go to if it was the only one in the country. I went there in person, asked to see her. Was mostly nice, but told her to take me off her list, didn’t appreciate it, blah blah. She did, haven’t been bothered since.

  • mavericksmom
    mavericksmom Member Posts: 1,042
    edited April 2023

    Moderators, I listened to that podcast, and all I can say is "oh, in a perfect world...."

    THEY NEED TO TAKE THAT WORD SURVIVORSHIP OUT OF THE PLAN! It is misleading and offensive!

    THEY NEED NOT TO SAY IT IS PERSONALIZED because none that I heard of are, mine definitely wasn't!


    Also, I was blindsided by mine which was sent via the mail! No warning, no prior discussion and not from a doctor but a nurse navigator who I never heard of