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Topic: New diagnosis 2 years after first diagnosis

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Dec 11, 2020 08:06AM

Mememee wrote:

in early 2018, I had a bilateral mastectomy for high grade DCIS in my right breast and had 3 lymph nodes removed (all negative). I had DIEP flap reconstruction at the same time as the BXM. Both the surgical oncologist and the general oncologist said I didn’t need radiation or adjunctive therapies. I was monitored for recurrence with an MRI every 6 months. In May 2019 my MRI showed to foci in the same area as my original tumor. The oncologist, plastic surgeon and radiologist said it would be too difficult to biopsy and they would just watch it.


Fast forward to 2020, my husband lost his job and our health insurance. And because of covid my MRI was cancelled in May 2020. In August we moved to a new city where my husband got a new job. I found a new oncologist and she sent for an MRI immediately. It came back BIRADS 5 in the same place as the May 2019 MRI. A biopsy stereostatic was done last wee (was not hard to do).

My diagnosis is invasive micro-papillary cancer. This is my third primary cancer in less than 5 years (I had uterine cancer in 2016]. Now I have to wait to meet surgeons and am getting a petscan next week

Questions - since I have a flap, has anyone had one flap removed? I want to minimize difficulty of surgery recovery. Or is it beast to keep the flap. The tumor is behind my flap, on my chest wall.

The doctor said there are likely lymph nodes involved. I am 48 and feeling really scared that it is metastatic. I am afraid of doing chemo, the thought of poisoning myself seems wrong. Can anyone share their experience on doing chemotherapy, the good, bad and ugly.

I am angry that my Miami oncologist passed over doing a biopsy in 2019 stating it would be too difficult to do, even though it wasn’t hard at all.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Dec 11, 2020 09:24AM Beesie wrote:

Mememee, I can't comment on your situation or offer any advice about what to do with regard to the flap, but just wanted to post to say that I'm so sorry that you are back with this recurrence (or new primary, whichever it might be).

I completely understand your fear that this might be metastatic, but hopefully it turns out that this cancer is localized and easily treatable.

Hopefully someone comes by who can offer advice. You can also do a search on the board as a whole or maybe within the Breast Reconstruction Forum using some key words such as "DIEP" and "recurrence" and that might turn up someone who may not see this post.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 11, 2020 09:25AM - edited Dec 11, 2020 09:28AM by WC3

Mememee:

I'm sorry you have been through so many difficult things these past few years. I do not know what type of chemotherapy, if any, is used to treat that specific type of cancer, however, while I initially had the same sentiments about poisoning myself with chemotherapy, I realized that my healthy cells were far more resilient to the chemotherapy than the cancer cells as the chemotherapy I had targets fast dividing cells and my cancerous cells divided faster than my healthy cells. Our bodies are not peaceful places. They are in a perpetual state of war from birth to death and so have evolved to take a bit of a beating. Your immune system is a war monger and has no qualms about going on a rampage, making you feel horrible and losing a few healthy cells to get rid of invaders and defectors. Chemotherapy is just a more cancer targeted version of this. My chemotherapy lasted about four months.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 11, 2020 11:00AM brittonkb wrote:

Sorry you're going through this. I can't speak to the surgical side of things, but am also 48 and going through Chemo right now. I did 4 DD AC followed by 12 weekly Taxol - my 12th coming up this Monday. Chemo was much, much easier than I feared. I never experienced nausea and am just now getting to the feeling of significant fatigue. I understand not wanting to poison yourself. I choose to look at it as poisoning the cancer.

Dx 4/29/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 3/13 nodes, ER+/PR+, HER2- (IHC) Surgery 5/20/2020 Lumpectomy; Lymph node removal: Sentinel Surgery 7/6/2020 Lymph node removal: Underarm/Axillary Chemotherapy 8/2/2020 AC + T (Taxol) Radiation Therapy 1/19/2021 Whole-breast: Breast, Lymph nodes
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Dec 11, 2020 11:16AM Mememee wrote:

Brittonkb, thank you for sharing your chemo experience. It really helps to know that the reality of chemo is its not easy, but not the worst thing. I am finding it very difficult since I moved and do not have a local support system. I will try to be more open minded and try to be comfortable with my fears. I like your perspective on thinking it killing the bad cells.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Dec 11, 2020 11:20AM Mememee wrote:

WC3

It’s so comforting hearing from women who are fighters. I am not sure what chemo regime my oncologist has planned for me yet. It seems complicated how many different types there are. The one thing that I have on my side is I have no health issues besides getting cancer too often. I never get colds, flu, no high blood pressure etc. thanks for you positive perspective.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Dec 11, 2020 02:08PM moth wrote:

I had just turned 51 when I had chemo the first time. It's really not that bad. If all you've seen are tv representations, they're overdramatic and over emphasize the side effects. There are many people on this board who worked full time or almost full time through treatment. I didn't - but I was in school for part of it & wrote final exams between surgery and chemo, then returned to school during radiation (after chemo finished). I was just fatigued and had to force myself to eat. You're young & otherwise healthy so that's positive. You can never tell how an individual will respond to chemo drugs but most do well & most of the side effects are well understood and proactively managed by the oncology team.

Depending on your chemo protocol, one thing to keep in mind is that you might not be able to drive there & back yourself. I had pre-meds which made me very drowsy so someone had to drive me home. I often drove there & my dh took the train to meet me there & drive me home. I was fatigued and not much into cooking so I liked having ready to eat meals or a good plan for food delivery.

I'm now on chemo since March & no end in sight. It's what's keeping me alive. There are bad days but tons of good days. & nope, I'm not a fighter. This is just medicine and we just keep showing up, one foot in front of the other.

Ultimately we all decide upon our healthcare and can refuse treatment. I hope you get good news on your PET scan and a treatment plan that you feel comfortable with.

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Dec 11, 2020 04:38PM LivinLife wrote:

Mememee, You've received some great feedback here! Just want to send support. The micro papillary type is indeed a sneaky one! You have been through a lot. I hope you have a good medical team your trust in your new area. The support part (lack of) really stinks though you have so many on breastcancer.org to offer info. and support much as you'd prefer not to have to deal with all this. I hope there are some others even if at some distance. All of this is important....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Dec 11, 2020 05:08PM - edited Dec 11, 2020 05:11PM by Astrid

Hi Mememee

My surgeon told me to hit it with everything as you will only get one good shot at it while it is early. You can see that I 've had multiple recurrences since 2002. It's not easy and thus this thread.

Not sure about your type of BC but some BC's respond best to chemo in the body but not breast area and thus radiation as well.

You are lucky you have the options of both right now becsuse you didn't get tx 1st time around.

I'd take the chemo. It might stop spread and save your life...or at least give you years more time....right?

It is doable...not easy...but usually not like movies where they are throwing up all the time. Cancer is poisoning your body right now so another poison will remedy it.

Yes it is still barbaric but it is all we have at this point in time.

Natural remedies won't fix this. We lost a good friend wjo was so sure she could fix it herself so forgive me for being earnest.

You have people who have dedicated their lives to helping and studying this in your onco's and surgeons. I'd trust them if you can.

Wishing you every good blessing and peace around your decision.

Astrid.🎄


"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Dec 15, 2020 05:10PM Mememee wrote:

Astrid

It’s very helpful to hear from other women whom have gone through multiple diagnoses of breast cancer, and who have been through the range of treatments. Since my cancer is high grade and a mixed rare type, I am going to do the chemo and radiation. It’s so scary to have another diagnosis. But to live a few more years is worth it. Thanks for sharing your experience.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Dec 15, 2020 06:21PM Astrid wrote:

wishing you every blessing with new round of treatments Mememee.


"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Dec 15, 2020 08:32PM Jaybird627 wrote:

Mememee,


I've done chemo and rads twice - 2005 and 2018. The first time I struggled with 'poisoning my body", the second time (I was then a parent) there was no way I wouldn't do chemo and rads despite having a BMX. I think we all question our recommended treatment(s) initially unless we have all the info we feel comfortable with moving forward. BC sucks no matter your DX or TX. It's all do-able depending on your outlook. Good luck!


J ~

Jaybird. My hopes are not always realized, but I always hope - Ovid. Surgery 3/4/2005 Lumpectomy; Lymph node removal; Mastectomy; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Dx 3/5/2005, IDC, Right, Stage IIB, Grade 2, ER+/PR+, HER2-
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Feb 1, 2021 07:18PM pt1234 wrote:

When you are first diagnosed in 2017 , did the surgeon got clear margins after mastectomy ?. Was the original size was 6 cms ?. Was there any chemo done and oncotype score ?.

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Feb 1, 2021 08:54PM Mememee wrote:

Hi PT1234

I was diagnosed in November 2017, margins were only 1mm so I had to go back for a second surgery to clear the margins. it was a bit over 6cm the tumor. No oncotype score was tested. Both the surgical oncologist and my medical oncologist said I didn’t need adjunctive therapy because I did the BxM. Plus I was already through menopause after having uterine cancer.

My new oncologist (I moved so have a new insurance & medical team) wants me to do chemo after surgery (which is next week!). She said I only have a 50% chance of surviving 5 years with surgery and it goes up to 60% if I get chemo and aromatase inhibitors. I struggle with the limited benefits of chemo given the side effects.

Mememe

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Feb 1, 2021 10:15PM Beesie wrote:

Mememee,

Have you been diagnosed with mets?

And has it been confirmed via biopsy that you have nodal involvement?

Because the statement "She said I only have a 50% chance of surviving 5 years with surgery and it goes up to 60% if I get chemo and aromatase inhibitors." makes absolutely no sense. The 5-year survival rate for regional cancers, i.e. cancers that have spread to the nodes but are not metastatic, is 86%. Of course every situation is different, and the fact that this is a local recurrence and an aggressive cancer could lower that figure, but 50% seems very low. Additionally, based on my understanding of the approx. benefit of chemo, if in fact you are starting at a 50% survival rate, chemo would generally be assumed to increase that to about 62% and the addition of an AI should take it to 70%-75%. Again, I realize that every situation is different, but the figures you've been told seem to be out of range.

Your previous diagnosis... could you clarify? You mentioned that you had DCIS, but your signature line states that you were Stage IB. Pure DCIS is always Stage 0, so did you also have some invasive cancer along with the DCIS? It's not unusual to have the two together and that would explain why you weren't Stage 0. And if this new cancer was in the same location (since you had a BMX, I assume you mean near the chest wall where you had the close margin), have your doctors confirmed if they believe this is a recurrence vs. a new primary. Because you mentioned that this is your "third primary cancer", but if it's in the same location, I would expect it's more likely to be a recurrence. That would impact treatment plans and prognosis.

Good luck with your surgery next week. What is the plan with regard to your DIEP reconstruction?


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 2, 2021 09:09AM Mememee wrote:

hi Bessie,

in my biopsy it was confirmed that a node is involved. The tumor in the same location as my original one. In addition to IDC cells, there is micropappliary cells - recurrence plus some new cancer. Based on the MRI the tumor has started to penetrate my pec wall. Based on this my Onco says that it will /is infiltrating my vascular system as well lymph system. Her treatment plan is not about curing the cancer, but to slow spread. My insurance will not approve a PET scan at this time

My original cancer had a small amount invasive cells that were outside the ductal system hence it was stage 1 and not 0.

The new onco surgeon has a plastic surgeon joining for the surgery. The goal is to not harm the vascular connections of my flap since the tumor is very close to it. Both Dr feel reasonably confident that there will be minimal change in my flap since the tumor is behind it but some flap tissue will be removed to create a large clear margin. I am aware my flap could die from the procedure. Honestly I would rather an easier recovery even if it means a less positive esthetic.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Radiation Therapy 3DCRT: Chest wall Chemotherapy 3/25/2021 AC + T (Taxol)
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Feb 2, 2021 02:08PM Beesie wrote:

Mememee, thanks for the clarification on your original diagnosis. It sounds similar to mine... lots of DCIS with a small IDC. So the MX was necessitated by the DCIS but the staging and treatment was based on the IDC.

Very interesting that the new micropapillary cells have shown up mixed in with the recurrence. I wonder if that happened as part of the evolution of the cancer cells... recurrences can have a difference hormone status and HER2 status, so can the subtype evolve as well? It seems way too coincidental that a second different breast cancer would develop in the exact same location as the previous cancer. I don't know, just thinking aloud here.

I'm sorry that it appears that the tumor has infiltrated the chest wall. Now the info you got from your MO makes more sense, because that would be a T4 tumor, which would be Stage IIIB. I'm still surprised though that the benefit from chemo and AIs is as low as your MO said - but I'm admittedly way out of my depth once we are talking about advanced stage disease. You may want to head to the Stage III forum on this board, or perhaps do a search on the board for others with chest wall infiltration, to see what treatments they are doing and what they've been told.

Again, good luck with the surgery next week!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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