Topic: Giving up Breat feeding - will I regret it?

Forum: Family and Family Planning Matters — A comforting place to discuss planning a family, fertility concerns, parenting children, or relationship issues with partners, siblings, or parents following a diagnosis.

Posted on: Oct 9, 2019 05:47AM

Posted on: Oct 9, 2019 05:47AM

BettyGrant wrote:

Hello, I'm 31 and have the BRAC 2 mutation.

I'm planning on having a preventative mastectomy but cannot make a decision on when. My plan was to do it next year - taking the pressure off to have children first. Both my family and my husbands family have terrible history with cancer so it seems like a good decision to get it all done and dusted and then move on with our lives.

However, I'm concerned about breast feeding and if I will come to regret the decision to not have given myself the chance to do it. I'm wondering about other people take on this or experience of not being able to breastfeed - due wither to mastectomies or did you plan to and then couldn't anyway?. Part of me thinks it's a small thing to hold out for - while the other part of me wonders if actually I'm just being too mathematical about a big decision.

Any advice?

Thank you!

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Oct 9, 2019 06:09AM santabarbarian wrote:

This is a tough decision. Often with BRCA they recommend ovaries to come out too; is that part of this? Is there a rush, or can you plan the surgery for 5 years down the road? Is pregnancy itself a risk?

For me breastfeeding was a joyful experience I am very glad I had. I even still love my breasts (despite cancer) for their incredible service to my children. (One of the reasons I was shocked to have BC is that breastfeeding is preventative and I did a lot of it!)

The chance of not being able to breastfeed is low if you have a normal birth and healthy baby and good breastfeeding management to begin. Once you have the latch and position figured out it is very easy (much easier!). OTOH I have a step daughter who came into my life as a toddler and feel no different about her and my bond with her than I do about my two sons whom I breastfed.

In order of importance: you being alive, you being a mother, you breastfeeding. So if you can do all three with out too much risk you could push the surgery later. Do you have dense breasts that are hard to monitor? That might be another factor. Maybe get a few opinions. Is it a rush in the medical opinion of your dotor? It seems like 31 might be years before BRCA problems result in cancer.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/11/2019 Whole breast: Breast, Lymph nodes
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Oct 15, 2019 04:25AM BettyGrant wrote:

Hi Santa Barbarian, thank you for your reply! It was really helpful!

The surgery can absolutely be pushed back - it's totally up to me if and when, which is wonderful that I don't have any immediate pressure. I suppose my train of thought is - why don't I get some major surgery out of the way asap and then crack on with the rest of my life at a leisurely pace, but the breastfeeding issue does niggle at me... seems nice to use my breasts for what they're there for before they go.

Thank you!

B xx

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Oct 15, 2019 07:05AM santabarbarian wrote:

You are welcome!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/11/2019 Whole breast: Breast, Lymph nodes
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Oct 15, 2019 07:36AM mightlybird01 wrote:

I can't tell you anything about breast feeding, as I had no children, and I also don't have BRCA, but recently I found this tool, that may help you in making your decisions.

Dx 4/12/2019, IDC/IDC: Medullary, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 5/21/2019 AC + T (Taxol) Surgery 11/7/2019 Mastectomy; Mastectomy (Right)
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Oct 15, 2019 08:53AM Runrcrb wrote:


Progress that has been made regarding breast cancer can sometimes be a mixed blessing. You know about your increased odds due to the gene mutation and while this may well save your life, it complicates your life in the short run as you weigh decisions such as this. I do not have any genetic factors for cancer and I did/do all the things that are said to protect me from cancer yet ... cancer showed up in 2016.

I have two grown children and breast fed both. My children bearing days were long before companies offered long paid maternity leave (my current employer provides 16 weeks at 100% pay; I had 6 weeks at 80%) or had special rooms for pumping (ladies’ room is not conducive). Consequently I breast fed for less than 12 weeks. My mother, who had children in the 60s, breast fed none of us. We all grew up reasonably well adjusted and as contributing members of society.

I tell you these things as I want you to know that breast feeding is not the be-all, end-all that some will have you believe. Yes, there are health benefits for your children. I firmly believe that how you feel about what you are doing has a greater impact on your children. If you don’t breast feed and every time you feed your child you feel guilty, that doesn’t seem healthy. Feeding your child with formula, holding him or her closely and knowing that you are providing sustenance and love is incredibly powerful. If you choose to delay your DMX until after child bearing but you are stressed about the potential of cancer every day, I believe that stress will be felt by your children.

I didn’t have to make this decision nor will my daughter (nothing in our genes) so my input is simply input. The decision is yours. I do believe that when you make it, you’ll know it is right when you don’t find yourself second guessing or revisiting it. Knowing what I know as a 58 year old mother of two, if my choice were breast feed or increase the likelihood I’d see them grow up, I would choose the latter.

All the best for the many decisions you have in your future.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Oct 15, 2019 09:27AM FTM wrote:

Hi BettyGrant

I was diagnosed during my pregnancy (at 35 weeks) and was hoping to breast feed up until chemo. I tried for the first 3 days without any success because of latch issues and poor milk production(I think a lot of it was psychological). My surgeon wanted me to stop because he didn’t want to operate on a lactating breast. It’s a difficult decision you have to make. I will always feel like my pregnancy contributed to my breast cancer but that is just my opinion.I can tell you going through treatment with a small baby is tough. Wishing you all the best.

Dx 6/10/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Surgery 8/1/2019 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 9/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/6/2019 Herceptin (trastuzumab) Hormonal Therapy 2/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 15, 2019 09:43AM gb2115 wrote:

I can give you another perspective. I come from a health background, and had it drilled into my head (and consequently drilled it into others) that "breast is best" when it comes to feeding infants. And then I had my daughter. She refused to latch. I spent $$$ on private lactation consultants who couldn't figure out how to make it work. As a last ditch effort, I pumped and fed her through a supplemental feeder that was hanging around my neck with a tube going down the nipple. That didn't really work because it would be like 90 minutes to get her to drink an ounce and then it would be time to pump again. So I gave up and exclusively pumped for nearly a year, feeding her breast milk in the bottle which she took like a champ. I would not do that again. It ruined my experience as a new mom. I cried all the time because I hated pumping, and resented having to pump so much at work once I went back. We tried at the 8 month mark to switch her to formula and she wouldn't drink it. Finally at 11 months, with me losing my mind, our kind pediatrician said to just try cow's milk and age appropriate food, which we did and she was fine.

My point of sharing this is, if you don't have the opportunity to breastfeed, I wouldn't sweat it. Babies really do fine on formula, and lactating isn't always what it's cracked up to be.

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.3 cm ER/PR+, Her2 -. Gr 2. Age 42
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Oct 21, 2019 04:42AM BettyGrant wrote:

Hello everyone,

Thank you so much for all your replies - it's made me feel much calmer (and made me tear up) and to think about my decision rather than worrying about possibilities in the future.

mightlybird01 that tool is incredible!! Really useful - will be passing that along to my family!

I think you're all right though in the sense that it can be a wonderful thing - but a calm household is far more beneficial, your story bg2115 sounds really hard on you and extremely difficult - I hope you're enjoying being a Mum now. And I agree Runrcrb - the knowledge and the life saving it can do is fantastic - but even if you try not to let it have an effect on your life - of course it does! It feels disrespectful to ignore the gene given how many people would have wished they could have had this information yet at the same time sometimes feels like my reaction to it is massive and life altering before anything has really happened. But like you FTM I don't want to go through surgery with a young baby around.

Thank you again to all of you, I feel much closer to my decision.

B xxx

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