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Topic: What if I just stop following up?

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Feb 4, 2020 04:55PM

pesky904 wrote:

In June, I’ll be at the 3 year mark since my diagnosis. I had 23 months of treatment, surgeries and radiation.

I’ve had so much follow up and it’s all ended up being nothing. I’ve lost everything in my life in the past few years. My husband left, I live in a relative’s unfinished basement. Side effects are still awful. I work freelance and can barely afford basic bills. My health insurance is through the state. I owe back taxes. Rents where I live average $1100 to $1350 for a studio/one bedroom.

I want to move to a cheaper state where I can actually afford rent. But it might take me a while to find a job that offers benefits.

What would hapif I just stopped following up and lived like I did pre-cancer, where some years I didn’t even bother to have an annual physical if didn’t havd any bothersome symptoms.

I mean, how much of this follow up is actually necessary? It seems like they’re making me so many appointments, which all make me miss work and lose money, and it always turns out I’m fine.

I’m 45. If I don’t start trying to rebuild my life now, it’s only going to get harder. As it stands, I’ll never recover my finances in my lifetime.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 4, 2020 05:12PM MinusTwo wrote:

pesky - I'm sure others will weigh in, but I would be concerned with a Stage III Triple-negative diagnosis and discontinuing all treatment. But maybe the docs have said you are NED (no evidence of disease) and only need occasional physicals. For example I'm 5 years past diagnosis & treatment for a recurrence. My doc only wants to see me once a year and no scans.

What have been your medical follow ups since your exchange surgery in 2018? What are the docs recommending? Did the docs say you are NED (no evidence of disease)?

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 4, 2020 05:22PM - edited Feb 4, 2020 05:22PM by pesky904

Nonone has ever said I'm NED but I assume I am. I'm followed up because I'm apparently high risk for recurrence due to my large tumor size (over 7cm at diagnosis).

So far I've had a bone and pet scan light up for a tumor on my femur that, after MRI, they said is benign even though they can't say what it is.

I have a 3mm liver lesion, also noted likely benign. A 2 can lesion arising out of right ovary...also benign.

Just had an endometrial biopsy due to thickened endometrium. Also benign but they still want to do a D&C.

So...benign liver lesion, benign ovarian cyst, benign femur tumor. Recent breast MRI looked normal.
just had bone density and thyroid ultrasound last Thursday. Have not been given results yet. Because I'm fine and so they don't even bother to release my reports in a time manner anymore.

I feel like it's so much follow up and yet I seem to be perfectly fine.


​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 4, 2020 05:27PM MinusTwo wrote:

I'd ask your Mo the same questions you posted. And tell him the reasons you're considering it. It would be interesting to hear the answer.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 4, 2020 05:37PM pesky904 wrote:

I am going to ask this at my next appointment.

I would think if I were going to have a recurrence of tnbc, they’d have seen something suspicious by now.

They freaked when the femur lit up on bone and PET last spring, but are now convinced it’s completely benign

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 4, 2020 05:38PM MinusTwo wrote:

I know we all want to put this behind us, but its sooo hard. Good luck with your plans to move & move on.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 4, 2020 05:51PM - edited Feb 4, 2020 06:01PM by Jaybird627

pesky904,

My story: BC @ age 44, lumpectomy, chemo, rads. BRCA2+. No prophylactic MX suggested at all by anyone.

Went through 3 oncs due to them leaving my system/hospital. I don't remember when but was more than 5 years NED when I saw my last onc.

Lived my life, had ovaries out, healthy life, living, moving on, etc.

2nd BC dx @ 57. Yep, new primary 13 years later. I wish I'd kept up with any oncologist because I think my 2nd BC would have been found sooner (thru tumor markers?) even though neither cancer was found thru mammos which I had EVERY year.

My new onc is super duper cautious with me which I appreciate.

So, no advice as we all have to live our lives the way we see best, I just wish I'd continued to be monitored.

I wish you luck!


Jaybird ~

Jaybird. My hopes are not always realized, but I always hope - Ovid. Dx 3/5/2005, IDC, Right, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 3/5/2005 Lumpectomy; Lymph node removal; Mastectomy; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant
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Feb 4, 2020 05:56PM AMLMom wrote:

pesky904, I am so so sorry for all that you are going through and all that has been taken from you. I hope your doctors can give you some sound advice. Hugs

Dx 11/2018, DCIS/IDC, Left, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Feb 4, 2020 06:43PM AliceBastable wrote:

If you move, I hope you can find a place where there's a teaching hospital that arranges for deep discounts through their clinic.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Feb 4, 2020 07:17PM santabarbarian wrote:

pesky I had TNBC too... most of the replies above were from people who did not have TNBC. It really is a very different animal form other BCs.

My understanding of TNBC recurrence risks is that at 3 years, the risk drops way down, and at 5 years, it *approaches* zero. Once in a blue moon after that time.

You had residual tumor after chemo of 3 cm, per your signature info-- which elevates the risk, but I believe it still follows the pattern of early recurrence (if any). I would try to keep on that followup for another two years, in your place. Then maybe drop it back but still keep insurance, even if you have a high deductible to keep the monthly cheap. Just in case (also considering post chemo illnesses can happen).

My MO is seeing me 4x/year for the first three years (from diagnosis) then it goes to 6 mos, then 12 mos at the 5 year mark. I get blood work... that's it. Annual Mammo & BS exam. They ran my cancer markers once but those don't seem to work for me (as they were never high even when I was full of cancer).

Re your strategy for moving and keeping coverage and rebuilding financially.... I wonder if it might make sense to get a job at a national chain of some kind -- one that offers insurance -- *before* moving (so you can take your training/seniority with you and work for the same company in the new place?) Even Starbucks might be an idea just to get the coverage. Or, pick a blue state that safeguards medical insurance and supports it with subsidies, medicare expansion, etc. CA is expensive but our state is a good one to get Obamacare through.

Last, if you are feeling well enough, you might investigate home health care for elders as a job idea. There is a large and growing population of elderly people and many of these jobs offer free room and board. It's basically housekeeping + companionship and help.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Feb 4, 2020 08:03PM smc123 wrote:

pesky, I am three years out from finishing treatment and my follow up Care has not included any additional scans, only routine blood work. The philosophy of my treatment center and MO is scans do not necessarily reveal recurrence any sooner than you recognizing symptoms from your own body. Then the MO will order scans. Did your MO order additional scans just as a precaution or were you feeling symptoms? I ask because if you are feeling well and not having symptoms maybe you could find a new MO that does not monitor with scans. I feel for you and understand you wanting a fresh start but I would stay connected with a MO.

Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Feb 4, 2020 08:41PM MinusTwo wrote:

I second what Alice said. If you can get to an NCI hospital, not only do you get the highest standard of care, but there can be heavy discounts. The same is true of some of the bigger teaching hospitals.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 4, 2020 11:28PM godisone wrote:

Talk to your doctor and visit only under the limits of your insurance money and to reduce the visits to once or twice an year. I hope this should help you to be able t focus more on your life.

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Feb 6, 2020 01:22PM pesky904 wrote:

Thanks, everyone, for sharing your thoughts on this!

I am just frustrated that one thing seems to lead to another and none of it ends up being anything. I've had nausea, early satiety and constant feeling of fullness since finishing treatment in late 2018. Trying to find the source of my GI issues has now led to the discovery of a 3mm hypodense lesion in the liver, a sclerotic lesion with central lucency that showed increased uptake in the left femur, a 2.5 cm lesion arising from the right ovary, a thickened endometrium, and the latest thing being 2 thyroid nodules, one of which has ill-defined margins...it seems they never fix the problem but seem to keep finding more things that then have to be followed up on, which involves either appointments or procedures. Which is making me just want to have them stop looking at everything altogether.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 6, 2020 03:16PM Trishyla wrote:

Hey, Pesky. I left you a long reply on your other thread regarding your GI symptoms. It has to do with Xeloda being an oral chemo and disrupting our gut biome. I have successfully repopulated my gut, and am finally feeling like me again.

Don't know if that's your issue, but might be worth looking into. There's more info on your other thread.

Good luck getting your life back on track. I'm kind of in the same boat, just 15 years older than you.

Best wishes.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)

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