Needing to decide on single vs bilateral mastectomy and doing reconstruction.

Stardust_7

I was diagnosed with DCIS stage 0 in my left breast in July. I have to get a mastectomy due to how extensive it is. They want to know if I want to do a bilateral mastectomy, reconstruction. The single mastectomy with a lift on the other side. The other side shows no cancer and I have no genetic markers.

I really have no idea what to do. I’m overwhelmed right now. My husband died in an accident within 2 hours of my diagnosis and he would be the one I would talk to this about.

Who else had these choices and watch can you tell me about your experience?

Dstruthe

I had a left mastectomy in 2018 with no reconstruction. For me, this was a good choice. I thought about going through reconstruction but decided against it. I didn't want to risk complications and knew it would also mean additional surgeries. I use a breast form. I was 50 when I was diagnosed. If I had been in my 20's or 30's, I probably would have tried reconstruction.

There are no right or wrong decisions - and you can always change your mind. Blessings and prayers for you. So sorry for your loss and diagnosis.

Lifeisgood22

I'm so sorry about your husband. I'll be sending you healing prayers on all fronts. I'm 69 years young and had a double mastectomy in April 2021 with reconstruction. I'm glad I did have both. My mother had breast cancer at 45. I now do not need to do semi-annual MRI's of my remaining breast. I was HR+PR+ and H2 negative. I suggest you continue to talk to your oncologist surgeon and PCP about what your options are. There are also cancer support services available. If you are not being supported by your oncologist surgeon, then I recommend you look elsewhere. Be comfortable with your caretaker staff. And talk to as many people that you need to be comfortable with your decision. I met a friend of a friend that had a double mastectomy 15 years ago and was so supportive of me and discussed her situation in detail. We are now BB's (Bosom Buddies for life). I am happy with my decision to have both breasts removed. God bless you with your decision and with grieving the loss of your husband. Big Hugs - MEK P.S. My mantra during my surgery and recovery with the BeeGee's 70's song "Stayin' Alive". I'm happy to be alive and cancer free. Do surround yourself with positive people. It certainly helps.

jajmom

https://csn.cancer.org/discussion/comment/1700689#Comment_1700689

Hi, I am sorry to hear about your diagnosis and the loss of your husband, just one of these is enough to deal with on it's own. I was found to have IDC and extensive DCIS in my right breast and due to biopsy complications on he RT they were unable to check calcifications in left breast.

I considered all options and due to my HER2+ HR- status I decided to have both breasts removed with skin sparing mastectomies and immediate start reconstruction with skin expanders being placed at time of surgery. I can honestly say I believe it helped me deal with the whole situation better. I never had the shock if waking up and feeling like my breasts were gone. Yes, the scars are ugly and there's no nipples but the fact that there was a slight fullness there helped me. I never questioned the decision to have both breast removed after surgery. Also, if it means anything, it is easier for the surgeon to make your breasts appear the same in shape and size. I am now 3 mos. post surgery and currently in the middle of chemo. I am getting abraxane and herceptin weekly.

My heart hurts for your situation, please know there are many here who care for you.

TooTallHER2pos

https://csn.cancer.org/discussion/comment/1700975#Comment_1700975

jajmom, I have searched everywhere since receiving a diagnosis of HER2+/HR- a few weeks ago. You are the only person with this diagnosis that I have heard of or had contact! Mine was IDC and extensive DCIS in my left breast, though. Thank you for sharing about your chemo--I've been wondering what would be used with the Herceptin. I've also been interested in avoiding reconstruction but still wanted some fullness--at 58 years old and never more than a B cup size, I am concerned about my self image. I'm sure hair loss will be a challenge.

My husband had to travel out of state every week while I raised our four children; we just 'moved in together' as our last child went to college last year. It was a honeymoon for sure! Then my mom was suddenly ill last autumn (2022) and passed away after a few short months. A week after she died, I found this lump--a benign cyst--and it's been such a shock. My husband still has to work out of state and I've gone back to our Florida home so I can have insurance coverage of my treatment/surgery.

jajmom

Hello TooTall,

I am sorry to hear not only of your recent diagnosis, but also of the loss of your mother. I hope you are holding up and have the support of friends and/or family while you need to be separated from your husband for treatment.

I'd like you to know that I've done well so far with my treatment regimen. I had weekly nab-paclitaxel and trastuzumab (herceptin) treatments from the end of August until the last week of December. I had to skip several treatment due to neutropenia. I started losing my hair 2- 2 1/2 weeks after the first treatment. Having long hair I took it off in stages because the loosening hair would cause tangles. So, I experienced a "bob" haircut for the first time ever for about a week! Then I felt I needed to take control of the situation (as you feel very much out of control by this time) and used the clippers on myself( my hair was getting quite sparse and falling out en masse).. I cried as I watched it fall to the floor as I bent over and clipped. But when I was done it was a feeling of relief. I decided when it was coming off! I did have control over that.

Fast forward to January 30... I went into surgery to have my tissue expanders replaced with permanent implants. The scars are healing and no, they don't look like my breasts did at all, having previously had the breasts of a 58 year old woman! They are on the smaller side, but I also have always been as well. Also, I didn't want to look like I just had a "boob job", sorry! Didn't know how else to say that.🙄 The thought of people thinking I had had deliberate surgery to my breasts, not knowing of the trauma I was experiencing of breast cancer and total mastectomies, was almost too much. There were also quite a few of insensitive folks who would ask if I was taking the opportunity ( can you imagine... opportunity!) to have large breasts! They just didn't have a clue. I had felt as if my femininity had been completly taken away in a matter of weeks. I had had a fairly rushed complete hysterectomy 2 weeks prior to my mastectomies! Thankfully everything was okay with the hysterectomy. But still, the last thing that was on my mind was getting big breasts!

I still believe I have made the right decision for me as I had said in the earlier post, I never really faced the shock of my breasts being completely gone. The negative side is that I needed to undergo surgery and healing again to finalize the reconstruction; although the last surgery wasn't nearly as difficult as the original.

I am currently going for treatments with trastuzumab every three weeks ( but at 3x the dose I was getting weekly.) I am tolerating it okay and so far my echocardiograms have not shown a decrease in cardiac function. You will most likely need to have that done every 3 months while on trastuzumab as it is pretty much protocal.

My hair started coming back in about a month after I stopped the taxane drug. My eyebrows and eyelashes were the last to go, and the first to come back in. But don't be surprised or concerned if it doesn't come everywhere at once as I had one eyebrow almost completely in before the other started! Also, the front of my scalp was the last to come in. I know it will be a long journey to recovery, but I am grateful to all my health care professionals who were willing to hear my many questions and concerns and allow me some sense of control of what I have been going through. My hope is that all the steps I have taken during the past 8 months have eliminated the cancer, but I'm sure it will take a while to feel I have beat it.

If I can answer any particular questions you may have, about anything, feel free to contact me. I would be glad to help in any way I can.

Best wishes,

Chris

TooTallHER2pos

Hi jajmom, thank you so much for sharing! I've never been much of a social media/blogger type but I'm so grateful for everyone who is willing to share and help others prepare for this journey. Your story has given me a confidence boost! My husband is trying to be here at least once a week; I do love being here in Florida though because I have the support of so many friends. Two of my children are driving down next week to help me get ready for chemo--I have two weeks before my port is put in so we are scurrying to get me moved into a new apartment (where I have friends in the next building).

Bust Size: Your explanation of not wanting to increase bust size resounded with me. Just ready to remove these and move on with life! My sister had what she calls 'partial mastectomy' almost 10 years ago and did not get reconstruction, simply a bit of a 'lift' at the time of surgery. She is so happy to just wear a bit of a padded bra, which sounds great to me. I haven't met with anyone other than the breast surgeon who will remove the carcinoma--but he is planning with me to have the spacers you mentioned. So glad you went into detail about your considerations because you addressed my concerns. Yes, I want to wake up from surgery with a bit of a 'bump'...but that's all!

Hair Loss Concern: Yes, this is where I'm concerned about my mental health. Your comment about cutting your own hair gave me the courage to go get a modified pixie cut yesterday because I had grown my hair into pony-tail length last year. My very precious hairstylist of nearly 20 years gave me this gift! It was not as traumatic like I expected a short-short cut to be. And I am also aware that my friends and family may adjust better to the fallout and start getting used to our new normal. I didn't tell my husband about the cut and he is flying in this morning to be with me at the first visit to the oncologist. It may be a bit of a shock to him but I seem so strong, so healthy that he may need a jolt of reality? It is a shock to me when I pass a mirror, that's for sure. Meanwhile, there is an online head cover resource for chemo-induced hair loss called 'Hats Scarves and More'. I just ordered a few items to get started--and to keep my head warm since I'm so cold natured at the moment.

Nutrition During Chemo: I was always slender but, when I recieved the HER2+/HR- diagnosis, I went on a strict no-sugar no-saturated fat diet to try and combat 'feeding' this type of cancer--and I cannot seem to stop losing weight. I also cannot find any nutritional information about what we should eat for an environmentally triggered cancer; my understanding is that HER2+ is triggered by obesity, smoking or alcoholism (but I don't fall into those categories). Do the oncologists give any dietary assistance or resources?

jajmom

Hello TooTall, I am happy to hear of the support you are receiving from friends and family. I understand the concerns about losing your hair both how you feel about it and others see you as well. I know it sounds silly but I was really concerned about how my grandsons ages 7 and 11 would feel about Nana being bald! They were fine, I explained it was just a medicine I was taking and that my hair would come back when I was done taking it. I feared it would come a a great shock to me and others as I had not had my hair cut since elementary school! It was an adjustment to say the least, but I was able to find positives in the situation as well. Getting a shower and getting ready to go somewhere has never been easier! Lol! I did not consider a wig, but many people do. I had bought a variety of caps, turbans and knit hats and to be honest, I loved my simple, knit slouchy hats and pretty much ignored the other caps. I guess it being winter during during my bald season was a benefit as well!

I am hoping you will be scheduled with your multi-disciplinary team to discuss the many questions I'm sure you have. This meeting would consist of time spent with all the areas involved in your care including your breast surgeon, plastic surgery, oncology, a breast cancer specialist (hopefully), and possibly radiology oncology and/or others. You should be provided with a package containing a lot of helpful information in dealing with your cancer and a list of resources with contact information. If you do not get something like this, please ask about it. Also, most cancer treatment centers provide a social worker to help support you and get you any help you may need. They can aslo answer many of your questions about daily life with cancer as they work directly with so many other patients in similar situations.

I would definitely make mention of the fact you are losing weight to your oncologist and ask to be referred to a nutritionist. If you are losing even before starting chemo it may cause more difficulty with treatment. I was fortunate to have maintained my weight and good appetite throughout my treatment. I had been on a strict ketogenic diet prior to treatment and doctors were okay with me continuing as I thrive quite well on the plan.

This latest cancer is my third, each completely different. I survived non-hodgkins lymphoma back in 1981, dealt with anal cancer about 6 years ago and now breast cancer. I have had extensive genetic testing with no indication of predisposition to any cancer. I don't believe I will ever know why I've had to go down this road, but I do know that I have become stronger in both faith and perseverance from each of these. Sometimes there is no obvious reason for cancer and we can't make ourselves crazy trying to figure out why and how we can stop it from happening.

Blessings to you,

Chris

Widdershins3

I'm so, so sorry about the loss of your husband. I hope you have support from friends and a good medical team.

10 years ago, I had stage 2 cancer in my right breast, with what the radiologist called "suspicious spots" in my left breast. I chose to have both breasts removed, since at 60+ I really didn't feel I needed them and, frankly, they were trying to kill me. (only partly said in jest)

They were able to preserve the skin/nipple, so I got tissue expanders and later some silicone forms placed. I've been mostly very happy with that decision, except for what they euphemistically called "a blister" high on the right breast where a surgeon scraped tissue away too close to the skin. That bummed me out, since it meant giving away all my lower cut summer neckline clothes. But I adjusted.

The healing phase was tedious, but nothing out of the ordinary and I got good care from my Kaiser HMO team. Was off painkillers in no time and once the surgery drains were removed, I just sort of "moved on" emotionally and adjusted to my body's changes.

The pluses of having a reconstruction are that I was able to get up to a 34B bra cup which is much easier to find than my previous smaller size. And my clothing looks and fits better too. I'm shy and didn't have the nerve to spend the rest of my life with a perfectly flat chest that would draw eyes, so it was definitely the right thing to do.

I wish you the best of luck in choosing your own path. And may fickle Fate be much kinder to you for the rest of this journey.

TooTallHER2pos

https://csn.cancer.org/discussion/comment/1704504#Comment_1704504

Chris, could you share a bit about having the masectomy? I am wondering how serious this surgery will be. I am nearly a 32B but have lost most of the 'filling'--including the lump--since I got halfway through my chemo/treatments. I'm sure I will have an opportunity to speak with my surgeon about this prior to surgery but I'm just wondering how much recovery time and difficulty sleeping I should expect.

How are you doing? Where are you in this journey now, jajmom?

jajmom

Hello TooTall,

It is good to hear from you!

My surgery itself was fairly long as I first had the mastectomies and then the plastics team came in to straighten out what was left and put the expanders in place. It was about 5 hours long. I was kept over night for observation(low BP) but they don't always do that.

The biggest ordeals I remember with the mastectomies was dealing with the drains and in the beginning I had a lot of nerve pain. I don't do well with narcotics so I was limited on what I was able to take. It just felt like my skin was raw even though it was perfectly healthy looking. This pain wasn't even at my incisions but mostly under my arms. As promised by my surgeon, this abated and disappeared in about a month. The side of 1 breast and armpit is now numb, I had lymph nodes removed from that area. After drains were out and nerve pain was over I felt great, but just wearing the surgical bra they provide 24/7 is a pain in the butt! As for sleeping after surgery, I slept in a recliner and that was quite comfortable. Overall, the surgery itself wasn't awfully uncomfortable and healing went well for me.

I am doing well and had my permanent implants put in this January. They wanted to wait until taxane treatment was done which was right before Christmas! Yay! About a month later my hair began to return, not all at the same time. I now have curly hair for the first time in my life lol!😄 I have a feeling though as it continues to grow out and the follicles recover I will have straight hair again. I haven't trimmed it yet, after going bald I don't want to think about snipping even 1 precious hair!😂 My hair is about 1.5 inches long now.

I am still taking trastuzumab every 3 weeks and will continue until August. I have been fortunate to have consistent echocardiograms so far and am grateful for that. I am experiencing peripheral and autonomic neuropathy from the nab-paclitaxel and prior chemotherapy. It's not too severe and a small price to pay for the chance to beat this cancer.

I am glad to hear you chemo has shrunk your lump, that's great! I don't know why my treatment was opposite (surgery 1st) but I believe most mastectomies done following chemotherapy like in your case.

I wish you the best and will be glad to share with you anything that may help.

Blessings,

Chris