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Topic: Contralateral BC Survival Stats

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jul 22, 2019 11:47AM

TheLadyGrey wrote:

I was diagnosed with BC in my right (contralateral) breast in March, chopped it off and am told it was DCIS so no further treatment is needed.

I'm fine with that, I guess.

I'm told that the contralateral BC is a whole new cancer, completely unrelated in any way, shape or form to the left breast cancer and it is treated as such, as if I didn't have cancer on the left 8 years ago.

That I don't buy. The premise takes "let's pretend this never happened" to a whole new level.

I am convinced this is going to kill me in the end. I have no family history and genetic testing was negative. There is no reason I got it once, much less twice.

My family rolls their eyes at me when I say it is going to kill me so I decided to find some statistics on survival rates for contralateral BC's but I can't find any.

Anyone know anything? Search "contralateral" on this site and nothing relevant pops up.

I'm not sure where this thread should live so mods feel free to move it!

Surgery 10/9/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/11/2011 Herceptin (trastuzumab) Chemotherapy 11/18/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/29/2012
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Jul 22, 2019 01:26PM SummerAngel wrote:

I've done a lot of research on bilateral BC, most studies look at both synchronous (what I had) and asynchronous (what you had) bilateral BC. From what I found, there is a very slight increase in risk of distant recurrence when bilateral, but the main risk is still the worse side's diagnosis. So, in my case, the risk of distant recurrence (stage IV) is about the same as a woman who had one-sided grade 1, low oncotype IDC, even though I had it in both breasts. Your risk would be about the same as any woman who had grade 3 IDC (although the risk would vary based on your oncotype vs others, of course).

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Jul 22, 2019 01:39PM vlnrph wrote:

I had a similar question/concern when first diagnosed with both lobular and ductal tumors. I wanted to find out how often that phenomenon occurs. It turns out that data collection in the US is abysmal, especially as compared to countries where literally every case is tracked. The situation with metastatic cancer is particularly bad: no one knows how many of us there are! Some have tried to back into that number by using death rates but still...

You do realize that BC doesn't kill anyone until it spreads beyond the breast to distant sites, right? Since your contralateral pathology only showed non-invasive disease, I would guess that you may not have much to worry about. However, if your mutation analysis was done more than five years ago, it might be worth a session with a certified genetic counselor in order to discuss whether broader panel testing could be informative.

As far as history of inheritance goes, these defects can be passed through male relatives and possibly 'hide' for generations. With small families, the opportunity for detection has further limitations. Hopefully, with the education you provide, yours will become more sympathetic.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jul 22, 2019 01:43PM Ingerp wrote:

Most of us never find out a reason. It could be environmental, some genetic mutation that hasn't been discovered yet, or, as my RO said, just bad luck.

All I can recommend is you do what you can to reduce the probability of recurrence going forward. There's lots of good research about that. I found Box 2 in the below link to be a short-and-sweet synopsis.


Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Jul 22, 2019 01:51PM edj3 wrote:

Great call out, Ingerp, thanks for posting that.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2019 04:50PM Beesie wrote:

Being diagnosed with breast cancer increases the risk that we will be diagnosed again, with a second primary breast cancer, unrelated to the first. There is no clear explanation as to why this is and likely the explanation is different for everyone, just as the cause our breast cancers is different for everyone. But what it comes down to is that since our bodies allowed for the development of breast cancer cells previously, and since our breasts presented a friendly environment for those cancer cells, it makes sense that it might happen again, and that our risk to develop a new primary is in fact greater than the risk of the average woman to develop a first breast cancer.

What this doesn't say anything about is the aggressiveness of the cancer. Nor does it address the timing of the discovery of the cancer. So while some of us might develop breast cancer twice (or even 3 or 4 times), each breast cancer might be an easily treatable non-aggressive cancer. And if the second cancer is found early - particularly if it is found while still DCIS - it might be virtually harmless.

Over the years I've seen lots of women return to this site with a new primary, sometimes just a few years after the first diagnosis but sometimes as much as 20 years later. In some cases, especially if the first diagnosis was DCIS or a tiny Stage IA, the second diagnosis might be more serious and therefore present a greater risk. But at least as often, the second diagnosis is less serious.

A recurrence generally presents a increased risk of mets. A new primary does not - with a new primary, the risk of mets for each diagnosis is assessed separately and each is unaffected by the other. That said, the overall survival rate for those diagnosed twice is lower than it is for those who have a single diagnosis of breast cancer. This makes sense, since there is a separate mortality risk associated with each breast cancer diagnosis. Additionally, it appears that being treated twice plays into the increased mortality risk, from two standpoints. First is the added toxicity of two rounds of treatments. Second is that some treatments might not be available to treat the second cancer because they were used for the first and cannot be given again.

TheLadyGrey, in your case, with DCIS being your second diagnosis, none of these factors come into play. There is virtually no mortality risk associated with a diagnosis of DCIS. There are no treatments that you would normally get for this second diagnosis that you cannot get because you've had the treatment before. And to my understanding, you aren't doubling up on any of the treatments you had for your first diagnosis (thereby increasing the impact on your body). So there is no reason why your DCIS diagnosis would affect your prognosis from your first diagnosis, and there is nothing about this second diagnosis that if affected by your first.

Some info on second primaries: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6025574/#!po=32.6087



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 24, 2019 07:50PM TheLadyGrey wrote:

I don't buy that I, with zero family history of any kind of cancer, randomly got two cancers in in one of the two (I think) organs of which there are two.

It doesn't really matter. I read somewhere early on that my chances of distant recurrence are either 0% or 100% and I run with that as the most logical approach. I'm reasonably young (59), thin and always have been, walk 100K steps a week, eat close to the ground, etc. I like wine.

I'm just trying to decide whether to stomp my feet and hold my breath until someone gives me a hysterectomy. I cannot tell you how incredibly pissed off I am going to be if I get endometrial or ovarian cancer.

Surgery 10/9/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/11/2011 Herceptin (trastuzumab) Chemotherapy 11/18/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/29/2012
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Jul 24, 2019 09:22PM bluepearl wrote:

I was diagnosed at 60 and then again at 63. Both were HR+, small, the first grade 1 the second grade 3. I may have done better had I taken the anti-hormone treatment first round, but I didn't...too scared of it. Now I am on it; 8 years out for first one and 6 years out for the second one. Hoping for the best. You just never know....but does anyone? My sister is stage 4 and today, with her chemo pill working and not giving her any problems, she almost got killed by a falling tree limb. You just never know.

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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Jul 27, 2019 01:44PM Belinda977 wrote:

Thankful to find this post. Just diagnosed with a second, primary BC. DCIS in right 7 years after IDC in left. This is all so confusing!

Belinda Dx 4/23/2012, IDC, 1cm, Stage IA, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 5/16/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/29/2012 Breast Hormonal Therapy 9/17/2012 Dx 7/25/2019, DCIS, Right, Stage 0, Grade 2, ER+ Surgery 8/28/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 8/29/2019, DCIS, Right, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-

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