Topic: After BC Treatment, Personalized Survivorship Care Needed

Forum: Life After Breast Cancer — Managing life after a breast cancer diagnosis, including rediscovering intimacy, coping with fear of recurrence, reconnecting relationships, sharing hobbies and interests, and finding inspiration in daily life.

Posted on: May 19, 2021 12:06PM

Posted on: May 19, 2021 12:06PM

moderators wrote:

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...

To send a PM to the Mods: community.breastcancer.org/my/... Surgery 5/10/2022
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May 19, 2021 04:06PM betrayal wrote:

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.

Surgery 1/31/2016 Lumpectomy; Lumpectomy (Left) Surgery 1/31/2016 Lymph node removal Surgery 3/3/2016 Lumpectomy; Lumpectomy (Left) Radiation Therapy 3/30/2016 Whole breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole) Hormonal Therapy 6/15/2020 Aromasin (exemestane)
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May 19, 2021 07:19PM doubting-cw wrote:

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.

Dx 1/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/18/2019 Lumpectomy Radiation Therapy 5/7/2019 Whole breast: Breast Hormonal Therapy 7/13/2019 Arimidex (anastrozole)
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May 4, 2022 05:56AM cardplayer wrote:

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.

Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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May 4, 2022 07:52AM - edited May 4, 2022 07:55AM by jons_girl

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!

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 4, 2022 03:32PM - edited May 12, 2022 05:17AM by cardplayer

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

Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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May 12, 2022 12:54AM - edited May 12, 2022 12:56AM by jons_girl

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!

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 12, 2022 05:16AM cardplayer wrote:

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.

Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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May 13, 2022 11:57PM jons_girl wrote:

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

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal

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