Bilateral mastectomy soon- new and getting anxious

TamiN47

Hi I am a 47 year old, single with an awesome 7 year old son. I went in for routine mammogram Aug 13. Have had 2 different pathology results in the same biopsy. DCIS stage 1 Nuclear Grade 3 High, whatever that means. It has been challenging to get clear answers. Since calcification are spread out from nipple to anterior chest wall I am doing a mastectomy and have opted to have right breast also removed.

I already have full body lymphedema and wear a whole body compression suit and have a rare disease that makes all this more complex.

I realize how blessed I am caught early and will be ok. I just am struggling with decision-making n about reconstruction as my doctor is concerned will increase chronic pain. Hoping through this board to speak with others whom are postop reconstruction and can share their experiences.

All suggestions on how to prepare are appreciAted. Working on frozen meals, clothing that buttons in front and how to pay bills, schedule for son and if I will be able to care for him the first couple of weeks.

Thanks again for all who read and or respond. .

Moderators

Hi Tami, and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you've found us. Our community is chock full of amazing members always willing to offer information, advice, and support -- we're all here for you!

We have a wonderful thread in the Surgery forum called Shopping/packing/to-do list for surgery + recovery that many find very helpful! And, depending on when your surgery is scheduled, you will find a monthly thread for members getting surgery at the same time as you, so you can compare experiences and share practical advice. Here's the October 2019 Surgery Support thread.

Also, you may want to start a thread in the Breast Reconstruction forum asking about what to expect.

We hope this helps and we look forward to hearing more from you and supporting you through your journey!

--The Mods

HopeWins

tami - hi, and the nervousness about surgery is well understood here. It might be good to start to read a review of all recon options. My breast surgeon gave me a handout notebook with descriptions of each. If you haven't been provided this, perhaps a nurse navigator or hospital social worker could lead you to one? I was able to cross a bunch off my list right away. I narrowed it down and then had two different PS consults to discuss my preferred recon choices.

I had DIEP. I'm 7w out and still have some numbness and discomfort but am feeling better every day. The first week or so, is rough for sure. I didn't quite have enough tissue to rebuild the same sized breasts. I have had moments of regret that I didn't do implants, but I'm getting more comfortable with my body and am hopeful that revision surgery will give me some needed volume in some spots. The flatter stomach kind of makes up for some loss up top, from a body image standpoint. My abdomen recovered a lot faster than I thought it would.

I think the long term satisfaction is higher with DIEP than implants, but the cosmetic aspect of implants is more predictable and controllable... I hope that helps.

LAstar

My diagnosis was similar, and I had BMX because of some suspicious spots on the right side (nothing found there). I had SGAP stage 1 at the same time as my BMX, and my recovery was very long (a full 8 weeks to get off pain meds). My husband took care of meals, house, and 4-year old. I think I couldn't have done a good job of it for a few weeks. Unfortunately, I had a complication (necrosis) on the cancer side and had to have the breast redone with DIEP 3 years later. My results are very nice now and everything has settled in. There is still numbness in my chest and around my entire waist since my donor sites are on both sides, but I'm used to it now. Over the course of this process, my personal realizations have been:

1. Reconstruction is a big hassle. It's nice to have a shapely figure in a dress BUT every time I buy a bra, I wonder why I didn't consider more fully the idea of being free of these things? They are bigger than I wanted and, while I don't need the support that I used to, I still have to deal with bras. The additional surgeries due to the complication were exhausting and added more risk to my treatment. A friend of mine who remained flat after BMX has fine little scars across her chest and it's not nearly as noticeable as I thought to not have breasts. She could go topless at the beach if she wanted! She was feeling better after about a month.

2. Lymphedema sucks. I was told with 3 nodes removed that I would have a 1-2% chance of getting LE. I have Stage 0 LE but I have to wear a sleeve for everything and have already had cellulitis. I wonder how much reconstruction exacerbated my risk of developing LE, but it sounds like there is not conclusive research on the risks: https://www.breastcancer.org/treatment/lymphedema/risk_factors

3. My breasts are not a matched set. I thought that with removing one breast I should just remove the other breast, be symmetric, and have those cute perky breasts everyone talks about post-MX. Reconstructing two breasts is twice the risk, and there's still no guarantee of symmetry. My DIEP recovery was so much easier because my right side was unaffected, so I could use that arm, get out of bed easier, and not be so helpless.

This is just food for thought! Your mileage may vary! I can't know how I would feel now if I had opted to not reconstruct or had a UMX instead of a BMX. I won't beat myself up by regretting choices made during a very scary and emotional time with limited knowledge. I would be concerned given your existing LE of having any surgery that wasn't completely necessary. I have very mild LE and it takes months to get it back under control when it flares up. Sadly, I have also encountered several untrustworthy plastic surgeons in my journey. They are often more concerned with the cosmetic result than one's health and might not relay or be aware of all the risks.

With DCIS, we have a little more time to consider all the options. I hope you find the path forward that brings you the most peace of mind & least risk so you can get back to enjoying life with your son!

Rachipie

I am 43 years old and 4 weeks out from having my bilateral mastectomy. The stress of making a decision whether or not to reconstruct immediatly was difficult for me. I chose not to reconstruct, and feel very happy with my decision. I do believe that every woman should be offered the choice. I visited with the plastic surgeon to explore my options and am thankful that I was given honest information about the procedure, it's risks and details. Reconstructed implants are not as easy as cosmetic implants which I had for 20 years before diagnosis. Healing takes much longer. You can always wait to reconstruct. Don't let anyone rush you. Think about what's easiest for you -not the plastic surgeon. My choice to go flat was stressful at first, but now I feel so free, it's good to have nothing foreign in my chest, and I'm healing quickly.

I am fortunate to have a husband at home, but many dear friends offered help. Let everyone help you!

Reaching is still a work in progress and I cannot lift over 10 lbs yet but I was up and walking about the house the next 2 days doing dishes. I sent my youngest son (8yrs) to a girlfriends house for a weekend sleep over so that I had quiet time right after surgery. You will need someone with you for 48 hrs. You will need help getting dressed. The drains are hellacious but necessary. As soon as they come out you will feel immensely better! I started going on slow walks around the neighborhood 3 days after surgery. I had a few heart pillows with ribbons and tied them from my neck. It felt good to hold it over the chest. You will need a lot of pillows. After diagnosis I began meditating to calm my mind. It also helped with the pain after surgery.

Bills can wait! Don't even look at them untill your drains are out.

Meals ( smoothies- casseroles) can be prepared in advance and frozen. Something I craved after surgery was Chia pudding. Eat a lot to regrow your tissues. Get protien and iron. Hydrate constantly and eat tons of fiber.

My feeling is coming back and I've been doing gentle stretching and soft massaging on my arms. They are almost back to normal.

Find a local support group - most hospitals have one- and utilize the help there. It can be a great resource.

My breast suregon was a woman and she gave me clean lines with a smooth tight surface. Although I was pretty confident about going flat- she cut under the scoop of my breasts so as to leave me the option of hidden scars for future reconstruction if I should change my mind. I do appreciate that although I'm happy with the current result.

I do not want any more surgeries if it can be helped and cutting into my chest every 10 years to replace bags is no longer a commitment that I'm willing to make.

I work in an image driven career and everyone else was so concerned about my choice to go flat. Well, I've have had no trouble at all with stylish clothing. Runway fashion has always been designed for flat chested models and there are plenty of options out there! Off shoulder, backless, deep cut v neck- jackets- scarves etc. Now that I've had the surgery, those same people tell me that I look beautiful as always and still "look like yourself". Damn straight!

My loved ones supported my choice- as they should- My youngest- 8 yrs- got all the " soft hugs" that he could beforehand and twice as many flat hugs now. He's happy to have mom acting normal again.

My breasts do not define me as a woman. I am still the vivacious, feminine, sexy, confident and cheerful woman that I always was- except now I don't own any bras and I love it!

I wish you the best for a calm and peaceful mind, and will send healing thoughts your way as you journey through this path. You are not alone and there are so many survivors in this experience with you!

The important thing is that we are alive- and have been granted more time to make precious golden memories. The cancer chapter is only one in the book of life and there are many others to follow with laughter and beauty.

.

msmaddy72

Beautiful! Thank you for sharing!