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Topic: Fourth recurrence - when to stop

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jul 18, 2019 11:15AM - edited Jul 18, 2019 11:17AM by mccathyg

mccathyg wrote:

HI everyone. Well back again, just been dx with my fourth recurrence. Waiting for surgery and pathology report. I have tried chemo twice and been on letrozole for three years. Have decided that neither chemo or hormone therapy are working for me. I am hoping that it hasn't spread but my latest blood tests have heightened calcium so a little concerned.

Guess my question is when would you stop and accept that enough is enough. I definitely don't want to do any more chemo and am questioning whether to bother continuing hormone therapy.

Would be grateful for opinions from anyothers in similar position.

Thanks

Cathy

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Jul 18, 2019 11:22AM hapa wrote:

Wow, that sucks. Perhaps your MO can get your insurance company to pay for AI + Ibrance, since your cancer seems to be resistant to hormone therapy alone.

I haven't had recurrence, but I didn't have a great response to chemo and am at a pretty high risk of recurrence. For me, if my recurrence is soon, I won't do chemo again, and perhaps not any treatment. In my mind, I already had a ton of treatment and if at the end of it I still have cancer, then treatment has only made my life worse so why do more? If recurrence happens 10 or 20 years down the road, then maybe chemo did knock it back and will work again, at least temporarily. It's just my logic. Best of luck with all of this.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Jul 18, 2019 11:25AM Moderators wrote:

mccathyg,

We are so very sorry to hear of your latest diagnosis. What a road you have traveled already. It's no wonder you're exhausted and dismayed.

However, we'd hope that you don't make any decisions until you know exactly what you're dealing with and discuss in detail with your doctors about the course of treatment they recommend. Every day it seems there are new treatments being discovered, so there's no need to give up hope.

We're all here for you and are happy to support you through whatever path you decide to take!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 18, 2019 11:39AM BevJen wrote:

Hello there. I am sure that this is very upsetting for you. But I would urge you to find out all of your options before throwing in the towel. I myself was originally diagnosed in 2003, first recurrence in 2006 (single site), melanoma also in 2006 (easily treated by Mohs surgery), and now a recurrence to my liver in 2019. Things are constantly changing in the field of breast cancer. I would urge you to talk to your docs, perhaps have a biopsy to send for a genomic report (like Foundation One), and see what that tells your docs about what treatment could actually be more effective for you.

Good luck! This is definitely a journey.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jul 18, 2019 12:11PM Spoonie77 wrote:

McCathy - Wow, what a journey you've been dealt. :( I don't blame you for asking the question, of when is enough, enough? I probably would be asking myself something similar. Somehow I am hoping the new pathology will offer some type of plan that may work for you while not impeeding your quality of life. I think that would be my largest concern at this point. I'm so sorry you are in this position. Please keep us posted on what you learn from the pathology and may you have a quick and uneventful healing period after your surgery. Many hugs.

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jul 18, 2019 06:30PM KBeee wrote:

Uuugh. I am sorry you're dealing with this again. I'd agree about asking for ibrance with the antihormonal. Keep us posted no what they decide. How completely frustrating to have this keep recurring.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jul 19, 2019 08:00AM mccathyg wrote:

Thanks for all your kind replies. I will definitely look into Ibrance which I think I would have to have with Faslodex as I have previously taken letrozole for three years. I need to find out if it is available in Hungary where I live (I am English). Don’t really want to move back to UK.

Any other suggestions for treatment gratefully received.

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Jul 19, 2019 11:03AM santabarbarian wrote:

Look into the care oncology clinic if you go to UK. They are repurposing other drugs in combination to fight BC.

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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Jul 19, 2019 11:44AM LaCombattante wrote:

Mccathyg, I am so so sorry that you are dealing with yet another recurrence!

I agree with others that CDK4/6 inhibitors could be a good option. Hope your MO can get it approved.

Surgery 6/19/2011 Mastectomy: Left Hormonal Therapy 8/24/2011 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/28/2019, ILC, Left, Grade 2, 6/8 nodes, ER+/PR+, HER2- Surgery 4/2/2019 Lymph node removal: Underarm/Axillary Chemotherapy 4/28/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jul 26, 2019 09:33PM ramona131313 wrote:

Hi Mccathy, I haven't been here in some years and am back now with a recurrence myself. I totally understand your line of thinking. However, I keep thinking about something my DH said. I was complaining about my situation, which is complicated by lung-heart issues that recently arose, and he said, "They are making discoveries every day and if you can have a reasonable quality of life and stay alive, they might come up with something that will work for your situation in the very near future." Unlike some of his comments, this one made good sense the longer I thought about it.

Secondly,as BevJen stated, if you have genetic testing available to you, your docs might be able to tell you what is likely to work. No sense in suffering side effects if the treatment isn't going to do much or any good. When I was first diagnosed (ER+, PR+, HER2-) my oncologist at Mayo clinic (very good research oncologist) told me that according to my genetic profile there was no use in trying chemo, as this type of cancer laughed at chemo and would only respond to hormonal treatment. I tried that-but I was unable to stay on it due to side-effects.

So, here I am back again after 7 years of relative good health. Recent studies indicate taking Tamox for five years may only prevent recurrence for five-ten years. That indicates that even if I stuck it out, I may still have this recurrence. That being said, I would be willing to at least try out something that was shown to work on my type of cancer this time as well.

You didn't mention if this new issue is on the same (left) side or on the right side. If it is on the right side, then maybe this will be your last encounter after the surgery is complete (fingers crossed). Hopefully it hasn't spread anywhere else. Sending hugs and good thoughts your way-and remember, no matter what, treatment is a very personal decision and you are the only one who can decide what is right for you.

Dx 7/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/25/2019, DCIS/ILC/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC)
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Jul 27, 2019 05:00AM mccathyg wrote:

Thanks Ramona for your comments. My cancer has always been on the left in the same area, it’s like it evades all treatment and then reappears! I too did not tolerate Tamoxifen, having tried it twice but I did tolerate Letrozole really well so it is a shame that it appears to have stopped working. I read some interesting research that is saying that some tumours start developing their own estrogen.

I talked to my surgeon about molecular testing my tumour tissue this time to try and identify some targeted therapies. This is available in Hungary so I am pleased about that. I think because they are part of the EU this helps and I hope I won’t have any problems accessing them.

Having tried conventional chemotherapy twice I won’t do anything similar as I really don’t think my digestive system could take another blasting.

I have had my CT and will get the results next week. I am a little concerned as my blood tests showed elevated calcium. Interestingly throughout my cancer journey the tumour markers have never been elevated. For me they have been no indicator of what is going on.


Thanks everyone for the support, it means so much to be able to talk to informed and knowledgeable ‘colleagues’

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Aug 2, 2019 10:33AM KBeee wrote:

Hoping your plan is in place soon. They have some molecular testing of tumors here (Foundation One is one...there are others). Hopefuly you find somethign specific to target your tumor.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Aug 2, 2019 10:41AM mccathyg wrote:

Thanks Karen. Just had my CT results and all looking good, so no spread. So I think a small op, get the tumour molecular tested and then change of medication. Very much a chronic disease for me now! Wish there was more research out there about BC becoming a chronic disease. Still I feel very lucky again

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Aug 2, 2019 10:44AM hapa wrote:

Congrats on your clean scan!

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Aug 2, 2019 11:08AM LaCombattante wrote:

McCarthyg, congratulations on the clean scan!
Surgery 6/19/2011 Mastectomy: Left Hormonal Therapy 8/24/2011 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/28/2019, ILC, Left, Grade 2, 6/8 nodes, ER+/PR+, HER2- Surgery 4/2/2019 Lymph node removal: Underarm/Axillary Chemotherapy 4/28/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Aug 7, 2019 05:29PM KBeee wrote:

So glad the scan was clear!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Aug 16, 2019 05:38AM mccathyg wrote:

So had my operation and waiting for the histology. Had a interesting chat with the surgeon and the molecular testing I would need before the targeted therapy would cost circa £4K! I have no idea how normal this is? But the good news is that any therapies thereafter would be free under the Health Insurance scheme here in Hungary. He did suggest maybe going back to the UK to have the test if it is cheaper. I have no idea what the protocols are in the UK now and whether the therapies are freely available or whether you have to apply for special funding.

Can anyone please tell me the name of the tests, I am getting confused with ONCOtype which I think is to find out if chemo would work for you?

Any help appreciated as I need to do some research.

I so appreciate all the knowledgeable people on this site!

Thanks

Cathy

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Aug 16, 2019 06:20AM BevJen wrote:

Cathy,

Since you have had your surgery, I am guessing that you cannot do one of the tumor testings, which is what I had (Foundation One). Foundation One also has a liquid biopsy, I believe. Another one I have seen on these boards is Guardant, which has a liquid biopsy test. I think there are others, but hopefully others with more knowledge will weigh in. You can google these companies and they describe the test. The Foundation One report that I received was very extensive and explained the genomic characteristics of my new tumor. It also indicated which medications might prove helpful with my particular tumor.

Good luck!

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Aug 18, 2019 10:35AM 2020Division wrote:

Hi there - similar story - after dx at 36yo in 2010, mastectomy and no nodal involvement, I was put on tamoxifen but really didn't tolerate it well. As you say, I would have only taken it for 5yrs, so it probably wouldn't have prevented my recurrence and spread in 2018. The tests my onco did were FISH test for HER involvement (negative) and a whole host of other things that showed my cancer very hormone dependent and slow-growing. Onco said IV chemo wouldn't work because that only kills fast-dividing cells! Started on Zoladex, had my ovaries out on Monday then will go onto Faslodex. I've also been taking Aromasin that stops hormone development at a cellular level, and I'll continue with that. My onco has applied for me to start Ribociclib as well - a newer CDK4/6 inhibitor that costs a third of the Palbociclib, and has had really good results if you look at the Monaleesa studies. Another thing we found was a benign prolactinoma on my pituitary gland, and prolactin also stimulates breast tissue, so I'm on Dostinex to lower the prolactin levels. Feeling rotten after the oopherectomy (full-blown menopause and quite sore), but like you, hopeful that we can convert this to a chronic condition. All the best xx

Surgery 10/10/2010 Mastectomy: Left; Reconstruction (left): Fat grafting, Nipple reconstruction, Pedicled TRAM flap, Silicone implant Dx 2/4/2019, IDC, Left, 1cm, Stage IV, metastasized to bone/lungs, Grade 1, 0/18 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 2/11/2019 Adriamycin (doxorubicin), Taxotere (docetaxel) Surgery Prophylactic ovary removal Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin)
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Aug 18, 2019 04:47PM Hopeful82014 wrote:

Cathy, samples of my tumor were ‘banked’ automatically (I believe for 7 years), and I believe that’s fairly common, so the fact that you’ve had your surgery may not necessarily limit the genomic tests available to you. Talking with you oncology team about this a.s.a.p. would be my first priority if I were in your shoes. Best of luck to you as you slog your way through this.

2020-So sorry for all you’re dealing with. I hope you will be feeling much better soon and will see encouraging results from your new treatment approach, and especially that the Ribociclib is approved quickly

Dx IDC
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Sep 4, 2019 09:47AM mccathyg wrote:

So just had the lab report back and interesting the latest recurrence is Er + 90%, PR -, HER2 -. This is a change from previous recurrences which were PR+. Not sure what to make of that??

Also can I assume that the Letrozole has not worked at all because of the Er score?

Any thoughts??

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Sep 4, 2019 03:16PM KBeee wrote:

Mine was PR- when it returned. My MO thinks that the Tamoxifen worked against the PR+ cells, but not the PR- ones (I was 80% PR+ the first time) and the PR- ones eventually grew into tumors. We don't know that for sure, but I'd been thinking the same thing, so we both share the same theory behind it. The other is that sometimes within a single tumor, the make up of it can be different, so sometimes it depends on what area they sample. Hoping you have a plan soon.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Sep 23, 2019 05:46AM Lujos wrote:

So sorry to hear your story! I had a recurrence 4 years after the first (stage 2b, ACT chemo, rads, letrozole).

This time I had a bmx, node clearance and capecitabine chemo (xeloda). Onc wanted me to take exemestane, but I decided I didn’t want the misery of hormone blockers when they’ve failed me anyway!

First time I was treated in Spain, this time in UK. Both great.

If you need chemo, try capecitabine maybe. It’d tablets, so not too intrusive, and the side effects aren’t horrendous. Let’s just hope it worked

Ann
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Sep 23, 2019 08:35AM Moderators wrote:

Lujos, welcome to our Community and thank you for sharing your experience and support. If you need help around the boards at all feel free to send us a private message. We're here for you!

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Sep 24, 2019 09:06AM helenlouise wrote:

Don’t forget your receptors can change with disease progression. I had to have an incisional biopsy to confirm er pr her2, hoping that my current recurrence had changed to her + as there would be more options for treatment. Unfortunately no still tnbc :(

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Oct 4, 2019 01:23PM BlueGirlRedState wrote:

So how do you keep your spirits up or confidence that treatment will work? I am close, but not there yet, to throwing in the towel. My energy is good, and I still enjoy the outdoors and walking my dog. The DR has not used the word recurrence or metastatic, she thinks each cancer is a "new one". ( 51 yrs at first Dx). 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery. Also contacting research clinic to see if they have other treatments available.

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Oct 6, 2019 11:49AM - edited Oct 6, 2019 04:48PM by mccathyg

This Post was deleted by mccathyg.
Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Oct 7, 2019 07:22AM mccathyg wrote:

Hi Bluegirl. Sorry to hear about your recurrences. Your post has made me think about how I do cope with the recurrences. I certainly feel very differently now and also react very differently when I have a recurrence. When I was first dx I was 40 years old and was devastated. I had psychotherapy for two years and a year on Prozac. Throughout my journey I have responded by doing all the cliche things: changed my job, went travelling, emigrated to another country. I guess I hoped that changes would improve my outlook. I had a great time doing all these things and had some amazing experiences that I might not have had otherwise. But here I am now after my fourth recurrence and this time I have reacted very differently. I have minimised the impact of my latest DX to almost ignoring it. I do what I have to do, tests, surgery, tests and change my medication but apart from that I am not changing my life. I went to a Jazz festival in between the biopsy and surgery, whilst there I felt so happy. My friend said how can you be so happy whilst all this is going on. I just said well what is the alternative now, I have done all I can. Maybe I have just accepted that this is my life now, Living with Recurrent Cancer which I believe is very different to Living with Cancer. You have different feelings than others. I wish there was more research into recurrent cancer and how patients can adjust to this. I find it frustrating sometimes.

I think we are amazingly resilient and tend to bounce back up after a period of time. After all what choice do we have? So my advice is take your time, feel what you need to feel, don't suppress your feelings, talk to a counsellor and get those negative feelings out. But try to live in the moment, you can't change the past and the future will take care of itself. Enjoy and see the beauty in nature when you go for those walks.

Best wishes to everyone....

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/21/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/31/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery Hormonal Therapy Aromasin (exemestane)
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Oct 10, 2019 11:34AM BlueGirlRedState wrote:

mccathyg - thank you for your words of encouragement. As you've said, what is the choice, but to power through it. I know when Dx in July/Aug, my reaction was to throw in the towel. But I still want to raft the Colorado, an "African Safari", and other adventures. I love the outdoors, camping, music etc. I contacted one research clinic in Seattle that my Oncologist refered me to, but they said their Rx based on the information DR provided woud be the same, and that they did not have any clinical trials or alternativetreatment for me. The oncologist thinks that each occurrence is "new", but there is no way to know. 51 yrs at first Dx) 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery.

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Nov 6, 2019 01:52PM bluepearl wrote:

mccarthyg: perhaps with the mastectomy, this will be all the treatment you need (plus, probably, radiation and then maybe not). I am hoping your other breast stays silent now too.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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May 2, 2020 03:05PM Mylogin wrote:

I too have a 4th recurrence. However, this time I see that if I do nothing the downward spiral will be a state that is isolated and alone without doctors to turn to for some help. I understand the wish to avoid or stop treatments as I have that history. At the moment, I would hope to encourage both you and myself to keep on and find some good in each day.

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