Living with Bilateral Mastectomy with No Reconstruction

missmelissa90

I decided to create a new thread here in the "Middle Age" group to start up a new conversation that I see has happened before. I'm a 46 yo mom of a 14 year old son and I underwent a BMX in early May to remove the cancer I knew I had on my right side and to try and stop it from returning or developing on my left. I have a PALB2 mutation and a grandmother who died of breast cancer at age 43, but no one else in my family has developed breast cancer. I didn't catch my cancer until it spread to my right lymph nodes, so my docs have thrown the proverbial treatment book at me: chemo first, then surgery, now radiation and soon hormonal treatment. Chemo shrank the cancer significantly, but didn't wipe it out, and pushed me into menopause, so at the end of radiation I'll be talking with my oncologist to see what pills he will prescribe. I'm contemplating having my ovaries removed before the 5 year window my oncologist recommends because PALB2 can mean a higher chance of ovarian cancer, and now that I've already gone into menopause I'm thinking I should just "get 'er done".

Because I've still got 4 weeks of radiation left, I'd love to hear from other BMXers about how radiation is impacting you, but I'd also love to hear from anyone else who doesn't feel middle aged, but for whom living w/o breasts is a brave new world. I'm also wondering what lies in store for boobless monitoring and check-ups and if anyone else is unhappy with how the look after surgery (I told my surgeon I wanted to be flat, but she either didn't remember or else my body is just prone to lumping as I've got several large bumps and swelling I call my faux-bies). I've been told that I handled chemo really well and other than numbness on the bottom of my feet and and what appears to be increased deafness (I had hearing loss before cancer, but either treatment or genetics has pushed me into the realm of hearing aids) I don't seem to have many other SEs. Having said that, my body tells me every day that I am going through treatment, and I haven't had a single full day where I have felt "normal" since surgery.

I'm not quite sure how I will be once I don't have treatments and doctor appointments every week and have to become just a regular jane who has no boobs. I have to say that other than the tightness and lumpiness, I am really loving being boobless, especially in the summer! I also have an enhanced my the ability to not give a f*** about what other people think about how I look (well, most of the time because I am also trying to find clothing that doesn't call out my lumpy chest.)

Anywho...that's my story and if you'd like to chat about anything related to any of these topics please post!

SPDGirl

Hello again MissMelissa90 and thanks for starting this thread.

I am a 45 year old wife and mother of a 17 year old (with cognitive and processing delays) and was diagnosed with 2 independent spots of IDC in March of this year via MBI, mammogram, and numerous ultrasounds and 2 biopsies.

I had a grandmother that passed away from breast cancer in her late 40's so I have been attentive to mammograms for many years now. I also originally did genetic testing when I was 40 and rested easier finding out I didn't carry any BRCA genes, but that security was short lived getting a breast cancer diagnosis in spite of this. I just received results of updated genetic testing and still don't have any identifiable genetic markers for breast cancer.

I chose bilateral mastectomy for several reasons. I didn't want to try and figure out being lopsided, I wanted to avoid radiation, and my husband and I wanted to feel more secure that there was not a good chance of getting cancer in my left breast. We feel even better about this decision post BMX as the biopsy of my "good" breast ended up showing DCIS that had not been detected before surgery.

We decided against reconstruction primarily because of my issues with Sensory Processing Disorder. I have a lot of tactile issues with the chest area being a main component. I have not been able to stand a bra or form fitting clothing my whole life, so have tackled this by layering and being creative to still function and be modest. Only those closest to me know of this struggle. Therefore, my husband and I thought that going flat might even have a silver lining eventually where I could wear things, especially in the summer, that I have never been able to. I am still praying for that result, but I was unexpectedly hit with chest tightness after bmx that is the equivalent to or worse than wearing a bra which is a worse case scenario for me .

On the positive front, it has just been determined that I don't need chemo. Tamoxifen is recommended, but I haven't decided yet if I am going to go that route or not. We are currently waiting on some results of potential blood clotting genetic issues that will play a part.

I had 3 sentinel nodes removed on my right side and 2 auxiliary nodes. Physically, I don't feel too lumpy, but seem to have almost a concave appearance. Almost as if my sternum is quite prominate in the upper middle of my chest and each side below where my breasts were is sunken in, but smooth from middle of my chest moving to under my arms.

missmelissa90

Thanks for sharing SPD- I know that I've seen you on some of the other pages, but I glad that you jumped into this thread. Glad to hear that you don't need chemo! It is definitely not a process I would wish anyone to go through, but at least it is more than my grandmother had. I know what you are saying about the tightness...just when I think I have loosened up, it comes back and I feel like I'm back at square one. Have you been seeing a Physical Therapist? If not, I'd highly recommend it because in just two sessions I feel like I'm doing better with my overall tightness and flexibility. She also did some manual massage at the last session that really helped. I know that this may be challenging for you with SPD, but they should be able to give you a set of exercises that are more suited to what your body needs rather than just the generic exercises that they give to all patients.

Are you pre or post menopausal? I ask because you said Tamoxifen, and I think that is for those who haven't yet gone through menopause? I have been reading a lot about the impacts and efficacy of the different types of drugs, including Tamoxifen, and I'm getting a little overwhelmed with it all. My visit to decide what to do doesn't come until the end of my radiation treatment in July, so I am trying to learn as much as I can. I did find out about a test you can take to help understand how your body will react to the drug, and I'm thinking about sharing it with my doctor: Oneome - Right Med https://oneome.com/

As for clothing, I have really enjoyed wearing nothing under my shirt and I am loving the fact that boob sweat is a thing of the past! I do think that being boobless makes me look and feel younger!

MexicoHeather

At 51, I consider myself middle aged. I, too, have a 17 year old son at home and a husband. I just finished 4 weeks of PT for my axillary/shoulder area. I started getting adhesion and lost range of motion in March.

My most recent doctor is the chronic pain/orthopedic doctor. She had some ideas for the CIPN (neuropathy from chemo) and we're checking the nerve conductivity soon.

No reconstruction has really worked out. I know that if I had encountered these same issues, I would be blaming the implants. Now I feel more in control because nothing's internal.

I'm 100% into cotton camisoles now. I bought a little sticky "blossom" to cover the left nipple if I go out somewhere, but usually I have a pattern or something anyway.

33 rounds of radiation took about a year to fade back to normal.

I'm missing the estrogen.

SPDGirl

MissMelissa - thank you for all the info. I have not had any PT and so far nobody has mentioned it to me professionally. If I wasn't reading these boards, I wouldn't know that it was a regular recommendation after BMX. I have my 2nd follow up with my BS a week from today and I will ask for a referral, altho that seems like forever away.

I am pre-menopausal. My Gyn has been saying that I am peri-menopausal for several years now, but my cycle is still fairly regular so the MO said Tamoxifen is the category I fall under.

Thank you for the testing link! It was on my list to ask the MO if such a thing existed and that was the question that I forgot!

I am so sorry that you have had to have chemo and now radiation too 🙁

MexicoHeather - hello to you. How do you feel the PT went? Good point on no reconstruction allowing us to bypass wondering if implants/etc have any impact on how we are feeling.

missmelissa90

MexicoHeather- Thanks for sharing. Did you do PT during radiation or did you start after? I just went to my third PT appointment and she shared how she is trying to be very careful with the muscles that are in the radiation zone and as a result can't do much work with them to increase my range of motion. My previous PT told me that often you have to wait until post-radiation to really start working on the shoulder area. The last appointment was great because she worked on some of the tightness around my chest and it felt looser immediately afterwards...however the next day I was sore again and felt like everything tightened up on me. We are going to keep doing weekly appointments until I finish rads and then re-evaluate, but I am really thinking that I will want to keep on doing PT for some time!

I also saw that you had prophylactic ovarian removal- was it due to genetics? How did you feel afterwards? I know you said you are missing the estrogen, has it impacted you health-wise? I also saw that you have been on several types of hormonal treatments...any feedback on SE?

Outfield

Hi, I was 44 when I was diagnosed, but that was 8 years ago this month! Been flat ever since. There's a great Facebook group, "Flat and Fabulous." Some of the same people here are there, but, honestly, it's bigger, and the FB platform allows sharing of things like videos and pictures. Took me a long time to feel "normal," but that was way more related to how sick I got from chemo than the surgery. What I didn't realize was how long I would feel tight. I still get really tight on my side that had the node dissection if I don't regularly do yoga or swim.

missmelissa90

Outfield-

Thanks for posting! I am a member of Flat & Fabulous and I love it! Not only for all the positive statements and pictures but for the updates and responses to many women on concerns. Thanks for giving the long term update! My PT told me at my last appointment that sometimes women just get used to the tightness, and while I can understand that I really hope that I can get away from the daily cancer reminder. There are moments when I don't think about it, but there seem to be just as many as I have to think about it. When I'm done with rads I am definitely going back to yoga as I found it both restful and physically challenging. I'm just a little scared for how it will be the first time back, as the last time I was there I had me boobies too.

Snickersmom

I'm older than all of you - I just turned 71. I had a BMX last year for my 70th birthday (quite a gift, right?) and I have no history in the women min my family but my brother died of IDC. I did not need radiation or chemo. My tumor was pretty small, Stage 1A and about 5mm. I am on Arimidex for at least 5 years.

I opted not to have reconstruction and don't regret my decision at all. So I went from 36C to flat. It has been a year and I am still getting used to it, although I sure don't miss wearing a bra in the summer - especially in Florida!! I love being flat and natural but sometimes I do use a sports bra with knitted knockers if I want to have some kind of shape. I don't have a problem going to Zumba or anywhere else with nothing under a t-shirt. I did go out and buy a lot of new tops - mostly patterned - that were not see through/sheer.

I have noticed that my breastbone/sternum seems to stick out more but maybe that's just because it's flat on either side of it. My surgeon left a little extra skin after my BMX and I just had him do scar revision surgery a few months ago to get rid of the little bumps and the seroma on one side. I feel much better now.

I have pretty much stopped being self-conscious about my flat chest and most of the time, I don't even think about it. I don't care what other people think. My 13 year old granddaughter told me that if somebody is looking at my chest, shame on them!

MexicoHeather

Hi MissM90:

To answer your questions:

1 This PT was almost 10 months after finishing the radiation. Things started getting pretty unbearable in March but PT really helped. There was some very minor level cording involved. I lost all the lymph nodes on that side, so I will have to watch it.

2 I went into chemopause and honestly I'm still having lots of hot flash problems. I took out the ovaries and everything else in case I couldn't tolerate the 5-10 years of medication. The Gyno was VERY supportive of the decision.

3 Before the TVH and ovarian surgery, the Gyno had me do pelvic floor therapy. This included sessions with an FDA approved device in the fem area! I would highly recommend it for help with dryness and sexiness. Estrogen...I can't have it, so I try to compensate!

4 The SE from the medications have all be about the same. I was a little dizzy on Femera, but I could have put up with it. I am 4 months in on Arimidex.

elezli

Good for you! I hope I can get over being flat.I am a 36C and know mentally, it will be traumatic. It's my 3rd round and now will go flat & fabulous!

Snickersmom

mexicoheather- where did you find 100% cotton camisoles? Everything I have found has either spandex or nylon in it.

Thx

Ann

MexicoHeather

G.H. Bass & Co. , It is 95% cotton, 5% spandex. Also, for whatever reason, Kmart has a 60/40 blend that doesn't leave me a sweaty mess.

Glad to hear you're healing well.

Lula73

miss Melissa (and anyone else considering ovary removal) - I was 43 when diagnosed last year. Genetic testing came back positive for BRIP1 mutation which is high risk for ovarian cancer. Ovarian cancer runs in my dad’s side and prostate cancer runs in mom’s side and interestingly, it was Mom that tested positive for BRIP1 not Dad. Anyway, like you I figured why not go ahead and remove the ovaries now? By the time I finish tamoxifen for 5 years I’ll be right at 50 which th the recommended age for removal. Plus removing them meant I could take an AI instead of tamoxifen (AIs are more effective). I ended up having all the baby making parts removed and my only regret was not doing it sooner. It was a very easy surgery too. I kept asking if they were positive the dr did the surgery because there was no pain. I hope this helps with your decision.

missmelissa90

Lula-

Thanks for the info! I have seven rad appts. left and then I am meeting with my MO to talk about what comes next and I think that I am really going to push for having my ovaries removed now. He did blood work to prove that I'm in menopause and since I haven't had a period since last November, I feel pretty confident that it has become a permanent condition! I have to say that my weekly PT appointments have been a true blessing and they are the only treatment that I look forward to! What has been the most interesting was the fact that she recommended that I get a a compression bra to deal with the swelling that I am still experiencing on both sides. I went to a store that specializes in such garments and they told me that I could get a medical referral and my insurance would cover it. Thank goodness I did because the bras (I get two) were $150 each and the inserts (Swell Spots) were $77 each (x2)! Now, my skin is so itchy that I can't stand to wear it, but for the two days I did, I noticed that it did help with the swelling! I'm looking forward to being sunburn/itch free and trying them out because the thing that bugs me the most about being flat and fabulous is that t-shirts show off my little lumps, that definitely can't be mistaken for breasts, and I would love to not have anything that noticeable on my chest.

MexicoHeather- Thank you so much for the info about pelvic floor therapy! I never knew it existed before, but I can definitely see that it can be helpful. TBH my hubby and I "got it on" after I finished chemo and I felt normal, but since surgery I have DEFINITELY not felt like having anyone touch my body because it is going through so much trauma. The scars have been the part that have made me feel the most unsexy and I haven't even gone full frontal to him yet. Now I have been having an allergic reaction to treatment and I itch all over all the time in addition to looking like someone threw boiling water over my chest, definitely not sexy. I like to think that I am a brave person, but when it comes to this issue I feel like I'm being a coward by not talking to him about it. He has been so supportive of me throughout and hasn't said a word, but I'm wondering how others have dealt with this issue?

Finally, with our recent heat wave I am really happy with my decision to be breast free! No boob sweat, no bra chafe and I can finally wear all the summer shirts that seem to be created so you can't possibly wear a bra!

Cheers!

SPDGirl

Lula - that is great that your surgery for " the baby making parts" was so easy! My mom had a hysterectomy a little over a year ago and said the same thing, which shocked me!

MissMelissa - I love it when people share information that makes life easier or cheaper! So exciting your bra purchases were covered! I have never been a big touchy feely person, but right now I feel like I don't want anyone to touch anything! Well, maybe my feet - I do enjoy a good foot massage My husband has been very understanding, but i still feel like a slug about it all. I don't think there is anything cowardice about this process, but our brains trick us into thinking so!

missmelissa90

Now, I'm not one to gush about particularly products, but I had an epiphany moment that I wanted to share with anyone who is concerned about not feeling sexy due to peeling, sensitivity or not having boobs. In my search for something to celebrate my anniversary in a big way with my hubby (if you know what I mean) I found this bodysuit from INC intimates at Macy's and it made be feel sexy like Beyonce! Not only did it cover my scars, scabs and burns, but it feels great on the inside and outside, and not having any cleavage did not stop me from looking sexy (I think my hubby agreed!). I'm kind of shouting this from the mountaintop as I know that I can't be the only one in this predicament and I want anyone who is even thinking that they can't feel good at this point to know otherwise!

SPDGirl

MissMelissa - excellent find! I love it when there are epiphany moments like that in life! I personally am just not interested in anything physical yet but thankfully hubby has been super understanding.