Join Us

We are 217,588 members in 84 forums discussing 160,642 topics.

Help with Abbreviations

Topic: Prophylactic removals?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Jan 31, 2020 08:02PM - edited Jan 31, 2020 08:03PM by danabanana9

danabanana9 wrote:

hey everyone, newb here.

so ive been handling everything ok since diagnosis, surgery, now RADS but one thing is really getting to me and thats the advisability of prophylactic surgeries and the choice whether or not to do it

i havent got BRCA test yet, my mother has a very different form of breast cancer she got much later and no other female on either side has had any cancers as far as i know, i am ashkenazi though bleh

has anyone tested positive and opted for increased monitoring instead of all the surgery? is that a stupid choice to make? i really dont want debilitating surgeries if they arent necessary. i dont know if opting for monitoring instead of prophylaxis is the right choice, but it is what im leaning towards. any guidance would be appreciated

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Page 1 of 1 (16 results)

Posts 1 - 16 (16 total)

Log in to post a reply

Feb 1, 2020 02:10AM MinusTwo wrote:

Did the BS get clean margins with the lumpectomy? I'm assuming the sentinel nodes were negative since you've not on chemo but you are having rads?

Everyone is different. I never considered lumpectomy. I just wanted them both gone. But if the docs are comfortable that they excised the cancer & got clear margins, and are just 'mopping up' with rads, I imagine you wouldn't need anything else right now but frequent monitoring.

I'd go ahead & do all the genetic tests to be thorough. Of course you can have the mastectomy at any time.

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
Log in to post a reply

Feb 1, 2020 01:35PM danabanana9 wrote:

  • Did the BS get clean margins with the lumpectomy? I'm assuming the sentinel nodes were negative since you've not on chemo but you are having rads?

oh, yes, sorry that was missing info. clean margin with one a little close and one sentinal node removed with less than 200 cancer cells, so technically N0

Of course you can have the mastectomy at any time.

oh yeh lol, i guess i didnt think of that. i figured you had to do everything right away once you assessed the risk with the genetic testing. i will be taking tamoxifen as far as i know.


its very hard to know the right decision

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 1, 2020 02:09PM Beesie wrote:

If you test positive, and that's a big IF since most breast cancers are not genetic, you should find out as much as you can about the particular BRCA mutation (or other - there are a couple of dozen other genetic mutations that increase breast cancer risk) that you have. Some confer a very high risk of breast cancer (70%+) while others confer a much lower risk (more in the range of 20% or 25%). You also should look at which other cancers are higher risk, and how much risk. Ovarian cancer, for example, is often tied to the same genetic mutations that increase the risk of breast cancer, and ovarian cancer can be very difficult to detect while it's early stage. That said, here again, the risk level for ovarian cancer will be very different depending on the particular mutation that someone carries.

There is no "one size fits all" answer to this, and in the end you have to do what feels right to you. What's most important is to have all the facts available to make your decision.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Feb 1, 2020 02:18PM danabanana9 wrote:

yes that makes sense, thank you!

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 1, 2020 03:08PM Ingerp wrote:

I really only did genetic testing because it would have increased my post-treatment checks if it had been positive. I currently only get an annual mammo. If I’d had a BC-relatedgenetic mutation, I’d alternate between mammos and MRIs every six months.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
Log in to post a reply

Feb 1, 2020 04:11PM danabanana9 wrote:

thanks ingerp this is what i am HOPING to do, i just dont know how to feel like its the right decision. i guess il see

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 1, 2020 06:24PM LiveLoveLaugh2020 wrote:

Dana it's such a difficult decision. I went back and forth in the beginning, originally wanted lumpectomy only. But after weeks of thinking I decided to go with Bil NSM. And I'm very thankful I did because it turns out my "good/normal" boob had LCIS. So that just made me even more confident with my decision. I also went back and forth about genetics but because of my age finally decided to do that as well.

You're always going to go back and forth about the what ifs, but you have to do what your heart is telling you. Wish you the best.

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with FG 01/2020.
Log in to post a reply

Feb 1, 2020 08:19PM danabanana9 wrote:

thank you for your input

i guess to some extent im baffled the need for such extreme surgical responses with stage 1a, there seems to be so much feel-good "at least you caugh tit early!!" "its only stage 1!" rhetoric out there your whole life and i cant wrap my head around my catching-it-early stage 1a "good luck" still seemingly being a totally hopeless death sentence that requires having all my body parts removed still to live "5 more years"

this is what i feel like im hearing now and i dont know how to deal with what seems like conflicting information. i want to make the correct decisions and i guess theres no way ill ever have enough info :(

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 1, 2020 10:37PM 2002chickadee wrote:

Hi Dana, I had genetic testing at the time of diagnosis, as it would have changed my surgical plan. Did you decline testing before your lumpectomy? I had a grandmother diagnosed on my non-Jewish (maternal) side at age 40, and I was dx at age 41. (My mom then got pancreatic cancer, also with no genetic mutations, so part of me thinks there's a whole lot they still don't know about genetic risk.) My father was Ashkanazi Jewish. I had no genetic mutations. If I was BRCA positive, my surgeon said they likely would have removed both breasts and my ovaries. Since I wasn't, I removed only one breast (full of both DCIS and IDC, clearly had to go). I have a co-worker who is BRCA positive and had prophylactic ovary removal, but did not remove her breasts (no cancer in either location), just has monitoring with MRI as genetic cancers can hide. I'd keep my breasts if the doctors do not recommend otherwise, my mastectomy area causes me a fair amount of routine woe and little sexual pleasure, and I'm grateful to have one untouched breast. I'd encourage you to have the genetic testing though, your insurance should cover and it might impact treatment and monitoring recommendations for other kinds of cancer beyond breast. BRCA can be implicated in ovarian cancer, pancreatic, etc.

Before my genetic test results came back I was pretty terrified at the idea of losing both breasts and my ovaries, as they seemed so fundamental to what made me a woman. Now, I have lost one breast and we've obliterated my ovaries chemically, and I still feel like just as much of a woman, so I smile a little to see those fears were unfounded. It's a tough situation to be in, but do the best you can with the information you have in hand, and I always felt like it made sense to try to make reversible decisions before jumping into irreversible ones. So with ovarian suppression, I get injections of Lupron rather than having them surgically removed.

Hope this helps! Try not to beat yourself up for feeling confused. It's confusing and there's a lot on the line physically and emotionally.

DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Feb 1, 2020 10:47PM danabanana9 wrote:

hey 2002chickadee thanks for your reply


i did decline before lumpectomy, and maybe that was dumb i dont know. i am ashkenazi and my mom has a different form of breast cancer (inflammatory HER2+ stage 4) she got at 63 (im 50). no other close relative had any kind of cancer that we know of (maybe a great grandfather with colon)


my medical oncologist can test me for BRCA in her office which for whatever reason sounds less daunting to me than the full test. my worry is just making the wrong decision, i dont want to die because i opted to monitor wait and see, but its my inclination

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 1, 2020 11:04PM - edited Feb 1, 2020 11:06PM by Beesie

"i guess to some extent im baffled the need for such extreme surgical responses with stage 1a, there seems to be so much feel-good "at least you caugh tit early!!" "its only stage 1!" rhetoric out there your whole life and i cant wrap my head around my catching-it-early stage 1a "good luck" still seemingly being a totally hopeless death sentence that requires having all my body parts removed still to live "5 more years""

You are mixing apples and oranges. Your treatment plan, lumpectomy + rads and Tamoxifen, is perfectly fine for your current early stage diagnosis. Your prognosis is excellent and the odds are high that with this treatment you won't have to deal with a recurrence and you'll be just fine.

But what you are asking about is what to do if you carry a genetic mutation that predisposes you to breast cancer and/or other cancers. If you test positive, then that's probably what's behind this diagnosis, and you were lucky to catch this cancer early. But it would also mean that you face a high risk to be diagnosed again - with a new primary cancer, unrelated to this current diagnosis - and next time you might not be so lucky as to catch it early. That's the reason to consider "extreme surgical responses" - it has absolutely nothing to do with your current diagnosis. It's your future risk to be diagnosed again that would drive these types of considerations, if you were to test positive.

If you are going to get genetic testing, I would highly recommend going to a genetic counsellor. An MO can do the quick blood draw and send in the sample, but understanding and explaining the results is simply not an MO's area of expertise.

Edited to add: You are very worried about making the wrong decision if you test positive. But you haven't even had the test yet, nevermind a positive result. Most breast cancer (~85%) is not genetic so it's more likely that you will test negative than positive. You are worrying about a decision you may never have to make.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Feb 2, 2020 10:19AM danabanana9 wrote:

Beesie


ok, yes, thank you. i was losing sight of what the genetic testing was all about. i am convincing myself i have 100% chance of BRCA because im ashkenazi and my mom has bc too, thats why. im just afraid and flailing

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 10/24/2019, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 2, 2020 10:36AM Beesie wrote:

dana, I am Ashkenazi too, my mother (and one of her sisters) have had breast cancer, although my mother was 80 when diagnosed (her sister was much younger). Three of my four grandparents have had other types of cancer and the other died very young, before something like breast cancer could develop. All the males on my father's side of the family have had prostate cancer (which is usually connected to the same genes as breast cancer). I tested negative on the 23 gene panel. That doesn't mean that there might not be a genetic connection, but if there is, it's pretty obscure and probably not very high risk, since it's not something identified yet.

And remember, even if you do test positive, every specific mutation (there are hundreds of different mutations even just within the BRCA genes) comes with a different risk of breast cancer. If you have a low risk BRCA2 mutation, monitoring might be a perfectly reasonable approach to take. So don't jump too many steps ahead with your assumptions. When you get the results, whatever they are, the answers might be perfectly clear to you.

Good luck with the testing, if you decide to go ahead!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Feb 2, 2020 11:22AM exbrnxgrl wrote:

dana,

I second beesie’s posts. When I was dx’ed in 2011, my mo recommended genetic testing. I am also an Ashkenazi Jew and my paternal grandmother passed away from breast cancer in the early 1960’s. I note the time period because none of my relatives seem to know any details of her bc, which was probably common at the time. I was referred to a genetic counselor who took extensive family histories, had me take an online “class” to educate me about what was known and not known about BRCA testing at the time and what the implications were. My tests were negative. In the summer of 2018, I had the full Ambry panel (it tests for 30 some odd known genes linked to bc). Again, everything was negative. That doesn’t mean that I don’t carry a gene that pre-disposed me to developing bc, it just means that if it exists it has yet to be discovered. However it does illustrate beesie’s point that the vast majority of bc cases do not have a familial connection with what is currently known.

If you do pursue genetic testing, I hope you see a genetic counselor. It was very helpful to me in terms of getting abetter understanding all the implications of genetic testing. All the best.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Mar 15, 2020 11:27AM Murphity wrote:

It's good to hear all of your perspectives. I don't have my full staging yet, but am likely a IA, ER+, PR+, HER2-neg. All of my results are delayed because I am also in a mega coronavirus hot zone. It's pretty freaking overwhelming.

I have worked extensively with breast cancer data as part of my job, and also have seen a couple concerning complications from prophylactic mastectomies. I never thought I would have mastectomies should I be in this position. It always seemed so extreme to me. And yet... I am 41. My maternal grandmother died in her 40s. My beloved maternal great-aunt (grandmother's sister) died of inflammatory in her 60s. I've been tested for BRCA/Myriad panel and am negative for everything. I recall that bilateral mastectomy doesn't have statistically significant difference on survival rates at this stage. Still, I am not crazy about the idea of radiation, perhaps for unfounded reasons (I am a former smoker and don't want rad to my chest). Also, coronavirus is so bad here I'm not sure I want to go anywhere *daily* for rad anytime soon. So bilat mast is, surprisingly, on the table for me. Not sure. I'm guessing I may have trouble getting insurance to pay for this with no *known* genetic variations. Not responding to anyone's beliefs or ideas here, just venting all the questions rattling inside my head.

Dx 2/28/2020, IDC, Left, Stage IA, ER+/PR+, HER2+ (FISH)
Log in to post a reply

Mar 15, 2020 03:02PM Beesie wrote:

Murphity, my understanding is that because you have breast cancer, insurance has to pay for your BMX and any reconstruction you choose. There is legislation that covers this. With breast cancer, surgical removal of the cancer is required, and you can opt for either a lumpectomy or mastectomy. If you opt for a MX, you can go flat or choose to reconstruct, and contralateral symmetry surgery must be covered by insurance.

Some insurance companies initially refuse, hoping that they can get away with it, but in the end they have to cover the cost.

Good luck with your decision. It's not an easy one, considering your family history and yet the negative genetic testing.

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

Page 1 of 1 (16 results)