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Double Mastectomy and Autologous Re-construction Surgery

Double Mastectomy and Autologous Re-construction Surgery

Posted by reklr on Feb 7, 2020 12:01 pm

After a routine mammogram, and then an ultrasound guided biopsy, I, as a 55 year old female was diagnosed Feb. 2019 with lobular invasive carcinoma in situ (right breast) with positive lymph node involvement. It was ER/PR + and HR2 negative. April 2019, I underwent a lumpectomy and sentinel node biopsy. No lump was ever detected by touch. In May of 2019, I had a bi-lateral breast MRI and was called for an ultrasound guided biopsy only to learn that I had dotal invasive carcinoma ER+ and PR negative and HR2 negative on my left breast, with NO lymph node involvement. I underwent the same procedures. I also had a MAMMAPRINT done and that identified that chemo was not required (I am grateful beyond belief). I underwent 16 radiation treatments on the left side and 25 on the right.. In October, I began taking tamoxifen which I knew was a hormone blocker, but I mistakenly thought it was considered a form of oral chemo. Nonetheless, in December, I underwent a second bi-lateral breast MRi to follow up on some enhancements/lesions. After another ultrasound and biopsy, I finally had good news and it was benign. They are wanting to monitor it so I have another mammogram at the end of May and another bi-lateral breast MRI in early June. 

In the meantime, my family doctor is encouraging me to proceed with a double mastectomy and autologous reconstruction. I have had discussions with my oncology surgeon as well as a plastic surgeon and they stated I am a candidate and can proceed with the surgeries. I  am paranoid, terrified, almost to the point of being totally consumed about the cancer coming back in either the form of breast cancer and/or metastatic cancer somewhere else. I've had 3 friends within the year have their breast cancer metastasize including one who has since passed, one who has bone cancer now and the other who has brain cancer. 

Is there anyone out there who has been through a similar diagnosis who can share their knowledge and experience, counsel and advice?

Those who have had a double mastectomy and autologous reconstruction, are you glad you did it? Any regrets? What can I expect? Are you cancer-free?

Thank you in advance,
Anxious and panicked


Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by jorola on Feb 8, 2020 12:11 am

Hello reklr‍ 
I certainly can understand why you would feel anxious and panicked with three friends with breast cancer, one sadly passing away. I am very sorry for your loss.
You have been through a lot in the last year but got some great news in December with the second bi-lateral breast MRI. Now you have the question of the double mastectomy and autologous reconstruction in front of you. I am going to put you in touch with some ladies who have experience with this: AngelaCKims1961GottaBelieveashcon‍  and Jcoles‍ and amcq‍ appear to be in very similar situations as you.
You asked some great questions and I am sure these great ladies can help share their experiences and you all can be an excellent support for each other.
Live, Laugh, Love

Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by ashcon on Feb 8, 2020 9:18 am

Hi reklr

Thanks for sharing your story and experience. Once we start losing friends to this stupid disease, we add anger to our fear and anxiety, yes?

Your story underlines how unique each of our individual stories are, under this large umbrella called "breast cancer". You have done well to get such thorough and diligent treatment and follow up scans and observations! 

As jorola‍ mentions, I had a double mastectomy in 2018 at age 54.  No regrets whatsoever. Unlike you, I opted for no reconstruction, and am "flat".  No regrets there either.
I had to prepare a strong argument with my oncologist and surgeon to have this done, so I'm kinda jealous that it was proactively offered to you.

I felt that even with my doctor's assurances that I'd be monitored and mammogrammed regularly without the bilateral mastectomy, and they'd "catch it early" if the cancer returned", that was no comfort to me, as they missed it the first time on a regular screening mammogram. By the time it was caught, it had advanced to stage III and gone into the nodes, putting me at a risk of mets now for the rest of my life.  I'm also triple negative, so no hormone or AI therapy for me like tamoxifen. So I'm glad you have that in your toolbelt as well. 

When we're in this boat, we want to do everything possible to do as much as possible to get rid of this beast. We don't have the time or emotional resources to live in a perpetual state of being Anxious or Panicked (as your signature suggests!) 

I'm hoping the others can share their experience with the reconstruction side of your question, and I hope (no, I know!) you will make the right decision, because it will "feel right" once it's made. 

---- "Nothing ever becomes real till it is experienced." ----

Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by Kims1961 on Feb 8, 2020 10:16 am

reklr‍ Glad you found us and have already some great advice from some wonderful folks. 

I jumped from the recommended lumpectomy to bilateral mastectomy with no reconstruction, even though the doctor said my tumour was small and felt contained. I was 56 at the time .

i live in a rural area and didn’t know of anyone who i could talk to . Like you i reached out here and also spoke to a peer support person at www.cancer.ca. 

I did my research and then trusted my gut. My radiation oncologist said i would regret not doing reconstruction but my regret was having him as my radiation oncologist ....lol

i did consult with my family doctor and surgeon about my decision and why. They understood and supported me. 

I am more concave than flat but still no regrets. I bought prosthetics but have never used them. 

Congrats on getting radiation done! How is the tamoxifen going? I am also on it and so far so good. 

You are in the right boat..the lifeboat 😉. Gather from others, talk to your doctors and paddle.  The seas can be choppy at times with more in the boat we can navigate them easier....UGH...i’ll stop with the metaphor 🚣‍♂️

Let us know how you’re doing! Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by reklr on Feb 12, 2020 9:21 am

Hello Kims1961‍  and thank you for reaching out and sharing your story. I can't thank you enough. I love your sense of humour, especially about your radiation oncologist. I think my approach is the same as yours....do your research and then go with your gut. I'm still gathering information and my gut is all over the map right now. It's such a personal decision.I'm glad though you had the support of your surgeon and family doctor. That's important. How are you feeling now? Wondering if you can share how you felt immediately after the surgery, a week or so after, a month or so after? At what point did you feel like you were "back to being yourself" if that's possible after something like this? How was it dealing with the drains...I'll be honest, this kind of freaks me out a little.  How did you heal from the surgery? Did you have to go for any physio after the fact? Did you have a community nurse come help you with your drains...I have heard that that happens?

As far as the tamoxifen, I actually feel like I am having less hot flashes, but my fatigue that I have been battling seems to still be with me. I went for bloodwork and was diagnosed with a hypothyroid which my doctor believes can also contribute to my fatigue. I'm on meds to try and get that under control. Other than that, may be some mood swings/irritability but no other side effects that I am aware of. 

I will continue to read and gather information and ultimately go with my gut. Time will tell. Thank you so much for being so open and sharing. I wish you great health and continue with the metaphors...I love them!


Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by Cynthia Mac on Feb 13, 2020 7:10 am

reklr‍ , I’m not a breast cancer survivor, so I can’t help you with all of your concerns, but I can certainly appreciate the reasons you have them. As I read your post, an old saying I once cross stitched came to my mind:

”Women are like tea leaves — you don’t know their strength until they’re in hot water.” 

I’m sure the other ladies will come back with more words for you.

Incidentally, I also cross stitched the words below this line, too - I believe in paying homage to favourite sayings!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Double Mastectomy and Autologous Re-construction Surgery

Posted by Kims1961 on Feb 13, 2020 11:45 pm

reklr‍ Hello!!  Sorry for the delay - you've posed some really good questions.

This is my personal account and of course, everyone is different but hopefully this helps:

 Much like giving birth - the longer the interval between the surgery and now - the less difficult it seemed?  It's like you forget some of the details or maybe its still chemo fog or my getting old?  lol..
I didn't have much experience with hospitals so didn't really know how to be a "patient".  As i had bilateral mastectomy and lived over 3 hours from the hospital, they kept me overnight. The day of the procedure i took an Ativan - just to help with the nervousness.  I don't remember anything until i woke from surgery.  I was happy to see the bandages and drains, as one fear was they would open we up and i would be "full of cancer" so they wouldn't bother doing the mastectomy. Due to the anesthesia, i didn't have much pain and the bandages covered my missing breasts.

I didn't do a full uncovering for a over a week - or so - I thought i would be more upset than I was.  Just before surgery my husband and i a "goodbye tour" for my breasts...ha ha...we took a little getaway and if you can believe it went hiking up a mountain in the Adirondacks called Nipple Mountain!  

The drains are cumbersome - i had 4 - 2 on each area where a breast was.  I did have a visiting nurse who came and checked the incision and the amount of fluid that i was getting in each drain.  You have to have so much "drain" over a period of time in order for them to remove the drain.  Removing the drain was painless - just a very weird tugging feeling.  I had to look away!

I think it was two days after surgery, i went for a short walk with my husband.  It felt so good to be outside.  I realized that "feeling normal" for me had more to do about returning to things i enjoyed doing, that breasts on my chest.  The outdoors was my therapy - my family .  Rest when you can - don't push it.  Netflix can be a lifeline..There was some relief in having the surgery over and boy did i LOVE the feel of flannel on my chest.

I longed for showers!  To get rid of some of the surgical "goop" and to just soak - but that took a while. I found ways to pin the drains on a belt so i could sponge bathe - mini baths.

I didn't have to do any physio but there are some exercises they will give you to do after.  More about stretching the area to keep things mobile.

Some things i would have told myself back then:
1. Stay ahead of the pain - there were times I felt good so didn't take the pain meds - which was a mistake.  When i stayed on track - I was able to do more .
2. I was scared/nervous/anxious/stressed before the procedure - i wished i had known it was ok to not be ok - this is hard but we are tougher!  Except help that is offered and thank the many awesome nurses and medical staff you will meet
3.Rest, rest , rest but also get some exercise/outdoors
4.  You've got this!!  

I"m so glad you posted - please feel free to ask me any questions.  We are here for you.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom