Join Us

We are 218,169 members in 84 forums discussing 160,928 topics.

Help with Abbreviations

Topic: What is your "magic number"

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Dec 27, 2019 11:15AM

amanda1 wrote:

When deciding if and when you would have a prophylactic mastectomy did you have a number in your head that helped you determined whether or not to have the mastectomy? I have my first oncoplastic surgeon appointment coming up in February and I am trying to get in the proper mindset. I of course will listen to her recommendations and take them under consideration. I guess I am asking, for those who have a genetic mutation, what is your risk percentage, and have you had or are you going to have a mastectomy? What is your "magic number"?

Log in to post a reply

Page 1 of 1 (20 results)

Posts 1 - 20 (20 total)

Log in to post a reply

Dec 27, 2019 01:24PM Yogatyme wrote:

I am BRCA1+ (Dx 12/18) and was doing close monitoring of breast health. My first MRI revealed suspicious spots in both breasts. Long story short, I was dxed with stage 1 bc in July of this year and had bilateral mastectomy b/c recurrence risk is 85% for both breasts w BRCA1. There was no hx of bc in my family which is why I was doing monitoring.....I regret not having prophylactic mastectomy but given the short time between BRCA1 dx and bc, it’s likely the breast cancer was already there. My sister is also BRCA1+ and b/c of my bc, had prophylactic mastectomy a few weeks ago. So, I’m not exactly sure what you mean by “magic number” but this is how things unfolded for me and my sister re: genetic mutation. It is completely an individual decision and I encourage you to get good information, taking into account your factors, so you can make an informed decision. My Best to you.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
Log in to post a reply

Dec 27, 2019 01:32PM amanda1 wrote:

Thank you for responding. I am sorry to hear about your breast cancer.

By magic number I mean at what percentage would you say , Yes go ahead and take them. Is it 30, 40 , 80%?

Log in to post a reply

Dec 27, 2019 01:36PM MelissaDallas wrote:

No, there is no “magic number” for me, because the risk calculators are little more accuate than a coin toss for many “high risk” conditions

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Dec 27, 2019 04:14PM farmerlucy wrote:

The genetic counselor I saw gave me a 50% Lifetime risk. I had a PBM and invasive cancer was found, 1.1 cm. My main regret is that I didn’t have surgery after my first biopsy two years earlier.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

Dec 27, 2019 08:50PM MinusTwo wrote:

I was originally diagnosed with DCIS in one very dense breast. Serious fibercystic condition. Now I don't think that is even called "cancer". I opted for a BMX up front. Glad I did because they found problems in the "good" breast too. So my magic number was - nothing was acceptable.

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

Dec 30, 2019 09:02AM amanda1 wrote:

Thank you so much for the replies. I am still trying to wrap my brain around everything. I think I am in the category that any risk is considered too high as well. I wish my appointment would hurry up and get here so I can just get it out of the way. My oncologist wants new 6 month scans to look for changes so February 5th is my big appointment to determine how we proceed. The not knowing is giving me anxiety.

Log in to post a reply

Dec 30, 2019 09:10AM MelissaDallas wrote:

You might consider that “any risk” is over and above the approximately 13-14% that all women have. Personally I’m not that bent out of shape at the 7% difference between “normal” and “high risk.” The difference in risk pales in comparison to the possible lifetime complications, pain and lifelong discomforts or infection risks from prophylacticmastectomy + reconstruction if you go that route.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Dec 30, 2019 10:34AM santabarbarian wrote:

It's always a risk/benefit analysis, filtered through personal preferences and needs.

What we all need is a clear picture of the odds of each of the choices before us truly benefitting us, and the downsides or risks of each choice.

There are many no-risk choices we can make, like maintaining a good diet and exercise, to make our bodies stronger, and less friendly to the growth of cancer.


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
Log in to post a reply

Dec 30, 2019 10:43AM MelissaDallas wrote:

I’ll make sure I refer my NCI designated Cancer Center physicians to Santa Barbarian for her superior knowledge

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Dec 30, 2019 10:50AM amanda1 wrote:

Thanks for the laugh MelissaDallas. :)

Log in to post a reply

Dec 30, 2019 02:37PM - edited Dec 30, 2019 02:38PM by santabarbarian

Melissa, why the snark? I was saying some beneficial things have potential risks alongside the benefits, and some do not.

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
Log in to post a reply

Dec 30, 2019 02:49PM santabarbarian wrote:

PS I was NOT suggesting that people forego any of those risk-carrying treatments in favor of only modifying their diet -- rather, I was stating *some* interventions carry concurrent risks, and other interventions can help us without hurting us. I did every single medical treatment that was recommended to me: a harsh chemo, surgery, & rads.

But in case you doubt that diet can be a material benefit to fighting/preventing cancer, please check out this ted talk by a Harvard physician-- it is eye-opening:

https://www.google.com/search?sxsrf=ACYBGNT7YkvM66bYpPjXH1s4ezOJ3GD-eg%3A1577384030466&source=hp&ei=XvgEXrDVGYLh-gSckpfoCA&q=can+we+eat+to+starve+cancer+ted+talk&oq=can+we+eat+to+starve+cancer+ted+talk&gs_l=psy-ab.3..0j0i22i30l2j0i333l3.1142.8189..8538...1.0..1.402.4854.6j28j0j1j1......0....1..gws-wiz.......0i131j35i39.munjUoaCmxs&ved=0ahUKEwiw_Lq29dPmAhWCsJ4KHRzJBY0Q4dUDCAg&uact=5

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
Log in to post a reply

Dec 30, 2019 05:21PM MinusTwo wrote:

SantaBarbarian - we can argue until we're blue in the face, but that's not what this thread is about.

As I've said on other threads where you post, I'm in favor of traditional, science based medicine working in hand with complementary wisdom. Diet is NOT going to cure my cancer. Will it make me stronger, likely so as will my exercise classes 3x a week - but neither are a magic bullet.

Everyone has to make their own choices. I don't enjoy the snark that moderation is basically irresponsible, when in fact life style choices are just as important to our happiness as deprivation.

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

Dec 30, 2019 06:43PM santabarbarian wrote:

MinusTwo, you are right that diet will not cure cancer.... but sadly, meds and surgeries do not reliably cure cancer either. Sadly, there is no magic bullet. At least an anti-inflammation diet won't leave you with neuropathy, lymphedema, or pain.

I clicked on this thread because it was about risk and odds.... Well, I had a 70% chance of being dead in 5 years, when I was diagnosed. So I am familiar with a numbers/odds analysis. I definitely agree some things are too severe, even if they might have a benefit, and that what feels too "severe" is an individual's decision. Some stage 1 women want to get a double Mx, which feels way too severe to me -- but clearly not to them, and it's their body.

Given a rotten picture at the outset, my POV was that I would take every single 1% - 2% bump in a good outcome that I could possibly get, especially if there was not an associated risk. I did a lot of small things in the hopes they might collectively help in a bigger way.

The ted talk is about a list of foods (like strawberries) that prevent angiogenesis as well as or better than Tx drugs... Angiogenesis is the formation of blood vessels by a tumor. Stopping it prevents progression.

Moderate eaters can include these foods in their diets too!


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
Log in to post a reply

Jan 2, 2020 11:07AM amanda1 wrote:

Thank you everyone for your responses. I am a firm believer in proven science fact. But if I am told that standing on my head for 5 minutes a day will make my odds better by even a fraction of a percent you better believe that I'm signing up for yoga that very day. I believe that I will opt for the mastectomy. I do not have my completed risk assessment yet but based on my previous mammo and family history I'm already above a 25% chance of getting breast cancer with in the next 5 years. That isn't taking into account my ATM, MSH2 and BARD1 mutations.

Log in to post a reply

Jan 2, 2020 11:55AM santabarbarian wrote:

amanda that sounds like a well reasoned decision. I wish you the best!

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
Log in to post a reply

Jan 4, 2020 08:03AM - edited Jan 4, 2020 10:41AM by pegasus68

Amanda1, best wishes with any decisions you make! I'm currently recovering from a PBMX. For me it wasn't a 'magic risk number', although my Tyrer Cuzick risk was high (75% lifetime due to LCIS, family history, other risk factors, but no identified mutations). Since I unfortunately have very 'busy' breasts, with the high risk imaging protocol alternating 3D mammo with MRI, they found something almost every 6-12 months - call-backs, extra 6 month 'watch and wait' imaging, lots of biopsies... I did this for 5 years and I just couldn't handle having a cancer scare at least once per year and continuing to do this for the next 20+ years of my life - and if they were going to keep chipping away at my boobs anyway, it made sense to me to get rid of them and be done with it. Tried tamoxifen (twice) but couldn't handle side effects that eventually developed. Although we know I had LCIS, it turns out that my boobs were so full of various kinds of atypias that I feel like it was only a matter of time until the odds caught up with me and that I made the right choice. Make no mistake, this is not an easy surgery or recovery (and I'm still early in the process - who knows what will happen or how I will feel about this long-term), so be sure you get as much information as possible to decide on what is best for you.

Log in to post a reply

Jan 4, 2020 08:36PM jessie123 wrote:

Amada -- just a thought -- my breast surgeon likes to do one breast at a time -- 3 months apart. She said that it's easier on the patient. It's also probably a bit safer --- not as large a surgery. Good luck with your decision. I also learned that I'm high risk after I had my lumpectomy because they found LCIS --- however, I need a respite from cancer for a while so I'm hoping to wait -- unless my upcoming first year MRI turns out bad.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 6, 2020 06:09PM Lea7777 wrote:

Right now the magic number for me is 6 or 7, depending on how you are counting. That's 6 biopsies, but not a 7th. I've had 4 biopsies and no cancer, just many high risk lesions and pre-cancerous conditions. I would do 2 more biopsies tops. It's 2 because I'd probably need a needle core biopsy and then a followup of the more comprehensive excisional biopsy. Regardless of what was found in that 5th and 6th biopsy, even just more atypia, I think I'd say enough stress, take 'em off. Of course, after maybe 10 more years of surveillance every 6 months, I might also say, this is too much stress, take 'em off. I have only been to 2 surveillances since my diagnoses in one breast and then the other.

Just one word on those risk assessments where you input your info and out pops a number...Just about every "breast professional" I have seen (and I have gotten second and third opinions on several occasions) assures me that those high numbers on risk assessment models help with getting an MRI covered by insurance, but they are not accurate. Tyrer Cuzick was ALWAYS mentioned as way overstating the risk and inaccurate. I know it seems ridiculous that the tool we rely on for a life altering decision is not trustworthy, but that is I what I have been told numerous times by those who know the models and even know Cuzick personally.

Best of luck to you all as you consider your risks and work to reduce them.

Log in to post a reply

Mar 5, 2020 11:12AM Utahmom wrote:

met with Oncologist and Genetic Counselor for BC yesterday in joint meeting. Said my numbers were wrong. Said I am not 30.9% but I am 57% lifetime. Said it was incomplete data. MRI showed that I am extremely dense and she said that is the highest level of density. She also stated that the accurate number for my category is about 4-5% of women in the world with that level of density.

Back to square one on options.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH

Page 1 of 1 (20 results)