37yrs old- newly diagnosed with invasive lobular in the right breast. Debating double or single mastectomy. Advice?

[BackpackingMama]

Hi, I’m 37 and a mother of 2 boys, the youngest is 19months. I was diagnosed with multifocal invasive lobular carcinoma in my right breast 13 days ago and am a little shaken! So far my doctors don’t suspect any lymph node involvement and the tumor is ER+ PR+ and HER2- which is leading to an excellent prognosis. My surgeon is recommending that I have a mastectomy on the right breast due to the placement of the tumors. She said I can do the mastectomy on the left at the same time as a risk reducing measure (prophylactic) and I don’t know how to decide. For those of you that have been faced with this, how did you decide what was right for you? Thanks so much for your input.

[SeattleMom]

Hello!

I was faced with your same decision 20 years ago when I was age 50. I was an “older mother” with two children, ages 10 and 7. My BC was Stage 1, with no lymph node involvement.

Due to my children’s young ages, I opted for a bilateral mastectomy despite knowing that I had a small cancerous lump in only one breast. I had no recommended follow up treatment.

Jump forward 17 years (now 2017) and I was diagnosed with MBC with mets to my spine. In other words, that clean, positive outcome, over the course of 17 years, had developed into MBC. I regret that my oncologist did not recommend a regimen of tamoxifen following the removal of my breasts.

IF I WAS YOU, realizing that each woman makes her own decisions based on a whole host of considerations, I would opt for a bilateral mastectomy followed by tamoxifen. I had 17 years of very little stress; that surgical decision is one I never regretted.

God bless you as you weigh your options!

Linda 💗💗🙏🏻🙏🏻

[Knapweed]

I can't advise re the mastectomy choice but can only agree that tamoxifen or other derivatives are absolutely part of the treatment regime here in UK - (for 5-10 years) so would advise you make sure you discuss this, as SeattleMom says below. Good luck with it all.

[Mmnyc]

Hi,

I was your age when I had my daughter and who would’ve thought 3 years later I would’ve been fighting for my life? For me my decision came down to basic facts. I’m a single mom. My mom is in her 70’s so I knew if I chose to have only one breast removed that I ran a high risk of it returning in a couple of years and then I would have to do the mastectomy on the other breast and then who would help me with my daughter? That was my main concern, recovering from the mastectomy. Of course, I knew that a mastectomy doesn’t equal to my cancer never returning again. I realize that it can return but I am hopeful that it won’t 🙏🏽

After the mastectomy they biopsied my tissue and everything came back as expected, stage 1b. Then you get something called an onco type score. I scored a 41 so my oncologist recommended chemo for 4 cycles and hormonal therapy afterwards. I was upset about the chemo. I thought for sure I wouldn’t need it because I was stage 1 but that’s not how they see it. So I went ahead with the chemo and thank goodness everything went fine. The chemo put me into menopause. That part did not feel good. Feeling like you’re burning up🤯 that was the plan but I was so angry. I felt like my body was not my body. I had to dig very deep within myself and finally accept that this treatment was the best for me and yes there are a lot of side effects like the hot flashes but you get used to them 🤷🏻‍♀️😩 now I’m taking monthly lupron shots and anastrazole to keep my cancer away. And this is for 10 years. I was upset over having to take a pill for 10 years but every time I get upset I think of my 3 year old daughter and everything is put back into perspective.

Hopefully for you it will be the same. A mastectomy is not a walk in the park and if you look at the stats, women who have mastectomies don’t outlive women who have lumpectomies. I can only speak for myself and why I decided to go that route. I don’t regret getting it done and the recovery period wasn’t as bad as I thought. Good luck and hopefully some of our responses will help you. 🙏🏽

[Rhwright12]

I would opt for the double...I had the single done 2 years ago...I’m extremely lop sided...38 DD on one side and flat on the other...So I typically get thicker flannel night shirts in a XL or XXL to cover up the difference in jammies. Nothing cute to cover up the difference would work. But when I wear a prosthetic during the day, absolutely no one has ever noticed. I was told I couldn’t have reconstruction So didn’t schedule it...but I did have clear margins! 😀

[felicitea]

Hi there,

This is a very personal decision, but I personally opted for a double mastectomy (and am so glad I did.)

I originally only had cancer in the left breast, but they ended up finding early stages in pathology after removing what was thought to be my healthy right breast. So that gave me even more peace of mind for making my decision to remove both.

Removing & reconstructing both breasts will also often allow your surgeons to achieve symmetry more easily, so I have been happy with everything so far.

I‘m 32 and just had my mastectomy in February. My final reconstruction is scheduled for next Friday. I do not regret my decision to remove both breasts at all & the surgeons have done a fantastic job with the aesthetics of making me feel like myself. Definitely make sure you feel comfortable with your surgeons too.

Best of luck with everything! You’ll be on the other side of this soon enough.

[quilting66]

I just have a comment on going into menopause. You will be angry, that is part of it. I didn't have cancer before I went into menopause naturally and I was definitely angry as well as having hot flashes and they weren't even that bad. So if you're feeling fragile and on edge just know that is normal and blame the menopause!

[suzi-mac]

I was diagnosed with stage 3 invasive lobular, spread to lymph nodes, shortly after my 50th birthday. Single mom with 3 teenage boys at home. Opted for double mastectomy to avoid a recurrence in the other breast. Surgical recovery was uneventful. Chemo & radiation followed & I won't sugarcoat it, that was tough. I then took Femara for 10 years before my bone metastasis was found last year. But 10 years NDE was amazing to me considering my initial diagnosis, and re-assured me I had made the right decision with aggressive treatment. I am now stably living with MBC on Ibrance & Faslodex. My personal recommendation is to "go big" - this is not a time to worry about looks & body image; you will still be every bit the woman you are now. You need to put your health first. I didn't have reconstruction until 4 years after treatment because I wanted to be sure I really was ready to undergo more surgeries & recovery. I've never regretted any of the treatment decisions I made. Peace & prayers to you in whatever you decide. God is with you, always. ❤🙏

[BackpackingMama]

Thank you all so much for your replies- you are all such inspirations to me! You all give me strength and hope for the future.

Under the guidance of my surgical oncologist I have decided to do the bilateral mastectomies. My surgeon is fully supportive and is going to do lymph node biopsy on my “healthy” breast (left) as well because she wasn’t entirely comfortable with my MRI results and wants to be sure that we are gathering all the information we need to hit this as aggressively as we can! I am grateful that I feel like my doctors are really looking out for me.

The plan is that I will do reconstruction on both sides but one of the tumors is very close to my chest wall and might effect things on that end. My surgery is scheduled for next week (June 4); thank you for all the well wishes! Looking forward to closing that section of my journey and tackling whatever comes after!

[Meme2be in reply to BackpackingMama]

I pray all went well with the surgery for you. I am a 23 year survivor. I had a radical mastectomy reconstruction with a tram flap. That's were they remove tissue from your tummy and make a beautiful breast to replace the one removed. A few suggestions from my experience. 1) while I was taking Tamoxifen. I was told by my doctor that it damages your bones of some important vitamins that needs to be replaces. I noticed it hurt to cross my ankles and the bones touching. When using the bathroom I fractured a rib. So my bones became brittle, once taking the vitamins I felt a lot better and my bones didn't hurt. 2) If you have had your lymph nodes removed. Ask about seeing someone regarding Lymphdemia, you are at high risk and need to be aware of what you can and can't do. Example: No needles or blood pressure taken in that arm, (I wear a medical bracelet with that info on it) wearing a compression sleeve, watch for swelling, not lifting over 10 pounds (they will tell you the correct amount), be very careful not to injure, cut or scratch your arm the the nodes were removed from to avoid infection and always massage or rub going towards your heart not away towards your hand. When I was raking our yard I found that my arm would tire and the rake would go flying right out of my hand, I questioned it and found that my arm cannot tolerate a lot of repetition or it tires very easily. Wearing my compression sleeve when I do work helps with the swelling (not a lot of it just enough to know it's not normal) and feels so much better. A lot of this information is not given to you and is over looked, I feel it's because they are focusing on healing the cancer. Many prayers for you.

[gladudey]

Wow, You are younger than my sons! Ok, I had invasive lobular at age 66. Both my radiologist and surgeon said I could had a lumpectomy and radiation. But my mom, aunt and cousins had breast cancer and I was my mom's caretaker. "I want a mastectomy", I said... my surgeon suggested a double mastectomy because invasive lobular tends to appear on the other breast eventually. Thought for 5 minutes and made a decision. Double mastectomy. I was stage 0. Neither my surgeon, nor oncologist thought I needed any kind of treatment. Saw another oncologist for second opinion and she also didn't recommend treatment. There was an open trial for patients with small tumors and they didn't want to accept me. So, seven years later, a recurrence appeared on the chest wall where the breast cancer had been. It was excised and at that time I had radiation, which done in a top hospital, and didn't affect me at all. Recovered well, without burns.

Tried Tamoxifen and had GYN side effects. Discontinued it.

So, you are young enough to have successful reconstruction. We have survivors on our SHARE Helpline who can talk you through it. I didn't, so can only speak of

surgery and radiation. Surgery was easy, Sentinel Node biopsy was done and because of no reconstruction, I only took a few Extra Strength Tylenol tabs for 4 days. Most important is the plastic surgeon and a decision on your type of reconstruction: implant or flap. Good luck to you. You have survivors of all ages and types of breast surgery at SHARE, who can "hold your hand" on the phone as you progress through your surgery and treatment. We are all here to help you! Good luck to you! Prayers and good wishes!

[BackpackingMama]

Hi again,

It will be 2 weeks tomorrow since the double mastectomy surgery. I did do stage 1 reconstruction with tissue expanders placed under the muscles. Recovery has been tough but it is going alright. I just got my drains out and am excited for when my physical restrictions will be eased back and I am able to do more activity.

My pathology came back as a bit of a shock- my surgeon was worried I was not going to have clear margins given what she saw visually. I did end up with clear margins (very, very small margins- 1 mm on my chest wall but clear!). However, one of the 3 sentinel nodes on my cancerous side (right) came back with a clinically undetected macrometastisis of 4mm. We knew going into the surgery the margins would be tight but no one ever suspected lymph node involvement, especially to this degree.

Because of the positive lymph node I have the option of having an axillary node dissection or doing radiation. I am thinking to do the radiation as the thought of the node dissection and the potential side effects really scare me. Additionally, I got a chest/abdominal/pelvic CT scan to check for distant metastasis to help with diagnosis/staging. My oncologist is out of the office until Monday but his staff told me they don’t see any tumors but they found a “spot” on my lung and they are referring my case to the pulmonary and thoracic tumor board for further evaluation, which is slightly confusing to me- is my scan clear or not? Prior to the body scan I was staged at 2A; fingers crossed it will stay that way. Hoping for better info once he is back in the office. We are still waiting on the Oncotype DX scores to determine chemotherapy and I feel confused about what to expect.

It’s been a roller coaster of emotion and the miss on the lymph node has eroded my confidence in the diagnostic process to some degree. Never before have I had such a strong nagging feeling of “what if they missed something?” and it’s hard to put aside. Does anyone have tips for how to deal with the uncertainty?

Thanks so much again for all of your comments and support. 😊

[gladudey]

Good, you are on your way to recovery. You should be having all your pathology results, hopefully this week. You still have a journey to go on but by Thanksgiving you'll be able to be truly thankful. Avail yourself of the many webinars and especially SHARE support groups. You won't be alone in your journey. Best to you and your family and please always wear a mask these days.

Our survivors are well because we knew to wear one, even though we were told not to!!!!! Gladys