My journey heading to double mastectomy
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Butterfly 40
Member Posts: 150 ✭
Hi Everyone,
I shared my journey a couple month ago, I would like to update where I am up to on this roller coaster.
My journey started with one lump on right breast I felt in December 2016. Had ultrasound and mammogram. When I went in for biopsy, another lump was found in the same breast. Biopsy from both lumps were positive. I was 40 years old very healthy and living in a very happy life. I was shocked, angry and very upset. I had wide local excision with sentinel node biopsy. My pathology report was hormone positive, lymph nodes clear, but indicated lobula carcinoma in situ (LCIS) across the specimen. My breast surgeon discussed about options with radiotherapy or mastectomy. It was the most difficult decision to make. After seen by plastic surgeon, I realised that reconstruction with flap is once only in a life time. I started to worry more about my left breast and gathered more information about LCIS which has a high chance bilaterally. I expressed my concerns to my breast surgeon, then I got referred to genetic counselling and MRI. I was so devastated when I was told that an irregular lesion was detected in my left breast with MRI. Now I have no choice, but participating bilateral mastectomy. I am very upset about losing both of my beautiful breasts, but very grateful that my surgeon listened my concerns and referred me for MRI. Otherwise that sneaky lesion wasn't detected by ultrasound and mammograms could thrive happily for a period of time. I am waiting for biopsy now, and gathering information about reconstruction. I would like to hear from anyone who had mastectomy or double mastectomy with immediate reconstruction.
There are a lot to think, decisions to make and challenges ahead. I know I am not alone. There are a lot of women and men riding on this roller coaster with me. Hope we can get over all the scary twists and turns, get off it and get our life back again.
Lots of love and hugs for everyone!
I shared my journey a couple month ago, I would like to update where I am up to on this roller coaster.
My journey started with one lump on right breast I felt in December 2016. Had ultrasound and mammogram. When I went in for biopsy, another lump was found in the same breast. Biopsy from both lumps were positive. I was 40 years old very healthy and living in a very happy life. I was shocked, angry and very upset. I had wide local excision with sentinel node biopsy. My pathology report was hormone positive, lymph nodes clear, but indicated lobula carcinoma in situ (LCIS) across the specimen. My breast surgeon discussed about options with radiotherapy or mastectomy. It was the most difficult decision to make. After seen by plastic surgeon, I realised that reconstruction with flap is once only in a life time. I started to worry more about my left breast and gathered more information about LCIS which has a high chance bilaterally. I expressed my concerns to my breast surgeon, then I got referred to genetic counselling and MRI. I was so devastated when I was told that an irregular lesion was detected in my left breast with MRI. Now I have no choice, but participating bilateral mastectomy. I am very upset about losing both of my beautiful breasts, but very grateful that my surgeon listened my concerns and referred me for MRI. Otherwise that sneaky lesion wasn't detected by ultrasound and mammograms could thrive happily for a period of time. I am waiting for biopsy now, and gathering information about reconstruction. I would like to hear from anyone who had mastectomy or double mastectomy with immediate reconstruction.
There are a lot to think, decisions to make and challenges ahead. I know I am not alone. There are a lot of women and men riding on this roller coaster with me. Hope we can get over all the scary twists and turns, get off it and get our life back again.
Lots of love and hugs for everyone!
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Comments
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Hi @Butterfly 40
I recently had a bilateral mastectomy on the 9th of March. It was a scary prospect getting both my breasts removed but cancers scares me more than surgery! My recovery has been amazing!! I have healed really quickly with no issues whatsoever. I was unable to get the immediate reconstruction because I am very slim so was not able to do the tissue recon and have to go for expanders then silicone implants. I am going to get my treatment done and dusted first and then focus on the recon. I didn't have big breasts too begin with so my physical appearance isn't that different. I wear the banjo bras that have pads in them from target and they work a treat. Good luck and remember the most important thing is getting yourself cancer free. Read lots, ask questions and connect with women who have done what you are about to do. Good luck xxx1 -
Hi @Butterfly 40, I'm sorry to hear of all the twists and turns your roller coaster has taken you on but thank goodness you had the MRI.
I had a routine Breastscreen mammogram and was diagnosed with 1.3cm IDC last July and had a left mastectomy on 1 August. My nodes were clear and since my cancer was grade 1, stage 1, I didn't need radiation or chemo. I am not big breasted so a lumpectomy wasn't a great option. I had a nipple sparing mastectomy with immediate silicone implant to match my healthy breast. Cosmetically the result is fantastic and except for the fading blue dye spots from my sentinel node biopsy there is no difference between my breasts. Of course, it is fake and doesn't have any sensation. It's softening more every day but does have its issues. I'm still sleeping in a crop top as it feels heavy being unsupported on my side. I can no longer wear a push up bra (and we smaller breasted women like a bit of help now and then0 -
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and the silicone implant is fixed in place and pretty much immovable. Good luck with your decision making. We are lucky to have options and I'm sure other women will be happy to share their experiences with you. Take care, Jane xx
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Hi @Igray3911, thank you so much for sharing your positive experience with double mastectomy. I need the positive reassurance. I am so happy to hear your recovery has been amazing! I don't have big breasts too. I have a small "wobbly jelly belly" after popped out 2 children, but enough to give me 2 small breasts. I am worried about the big operation involved with tissue recon, I am not sure what the implants will be feeling like. Thank you for remind me that the most important thing is to get myself cancer free. I need to focus!
Good luck with your treatment!
Lots love and hugs for you!0 -
@Hopes and Dreams , thank you for sharing your experience with mastectomy and implants recon, Jane. It's good to know the positive and negative side of it. We are lucky there are options, there is no right or wrong decision. We make the decision we think it is the best for ourself. Take care!
Lots of love and hugs for you!
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@butterfly40 I am currently recovering 4 weeks today from a single mastectomy/ immediate diepflap reconstruction. This has come 15 months after my Chemo finished but as a result of a recurrence in my left breast. Like you I did all my homework prior, I was only ER+ IDC 2.5cm, zero node involvement, wide excision, BRACA Gene negative. Genetic Counsellors only recommended in my case a single. So I totally get you how difficult it would be with your diagnosis and now no choice, had my gene testing been positive double is what I would have done. The op is lengthy it took 7hrs, the first week is pretty tough I wont lie, but once I got home I improved everyday. Have you joined the private group of Breast Reconstruction?? Ive recently posted my story there. Its amazing how fantastic the Plastic Surgery is these days. I have a revision yet to do to match my boobs but I am astounded at how great already I look and a new tummy LOL. Definitely have a look at the group, lots of stories to sift through, very helpful! Hugs Melinda xo1
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@melclarity thank you for sharing your experience, Melinda. I have joined the reconstruction group, read your posts and commented. Thank you for sharing the pictures. To see what you have been through, the amazing progress and results, helping me to make decisions and build up my confidence leading up to my double mastectomy. It's amazing how great you were at 3.5 weeks after the rough start with pain issues. I am so happy to see your achievement. All the best to you!
Lots of love and hugs for you!0 -
@Butterfly 40 Thank you, honestly its gotten even better and for such a short time, I couldnt be happier with the result. I'll repost pics as I go so people can see the great result if ever contemplating this surgery. Big hugs to you xoxo0
