Mayo Clinic Connect
After a Lumpectomy, I am now told that I would need a mastectomy, since cancer is pass margins. What can I expect with this procedure of a full removal of breast.
Good question, RunningLakes!
I’m tagging fellow Connect members who have had a mastectomy. Hopefully @hereigoagain @cindylb @djankord1 @deniseestrada @marbar369 @barbarah can share their experiences and help prepare you for what you can expect.
When will you have the procedure, @elvandi? Are you also considering reconstruction?
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I am having a hard time with the site today (could very well be me). Anyway, I’m trying to reply to Running Lakes about the mastectomy but not sure it this will get through. Colleenyoung, if you’re smarter than me at this, please send my response to Running Lakes.
I had a bi lateral mastectomy (both breasts) and the surgery is remarkably not that bad. It’s scary of course but the pain following, for me, was very manageable. Other women who have had this done seem to agree. As my surgeon said, it’s just removal of fat from the front of your body so it’s not as complex as one might think. I would recommend researching several things with your doctors and even on your own prior to surgery to make it a little easier.
When they remove the breast they remove lymph nodes to check for cancer spread (unless you’ve already had some of that?). When they do there is a condition called lymphedema that I highly recommend you get information about from your doctors. With only one lymph node removed I still got lymphedema, which is rare, but finding follow up treatment (massage and physical therapy) ahead of time was helpful for me.
Also, talk with the doctors about physical therapy, exercise and movement. You get some nerve damage from the removal and having a plan to work through the scarring and tissue and nerve damage ahead of time has made a big difference for me. My outcome is very good and I attribute it to getting lots of support in massage and physical therapy.
I chose NOT to have reconstruction because I didn’t want the extra surgery and frankly I was tired of buying and wearing bras. I still have not worn my prosthesis bra and don’t miss having breasts (most of the time…some clothes are off limits now). I look a little weird but I’m adjusting to that. If you are having one breast removed however (as a friend of mine did) I would highly recommend the reconstruction so you’ll have two breasts and less hassle getting dressed. The prosthesis are pretty good but heavy and hot in the summer. I have heard that radiation therapy after reconstruction can make the reconstructed breast change, so that’s another question to ask your doctors…other ladies here could probably give you better information on that.
I think all women would agree that the hardest part of breast removal are the drains they put in to take care of the extra fluids post surgery. No way around it….it’s messy and uncomfortable but getting a nice camisole that has pockets for the drains helped me a lot. When I was done with the camisole I donated it back to the place I bought it and so I know there are programs to get those free or low cost at prosthesis stores.
I am not minimizing the difficulty of this process. I was a scared, nervous wreck about it but in the end, knowing that the cancer is as ‘gone’ as you can get it from your body is a good thing, at least that’s how I saw it at the time of my decision. My surgery was early afternoon and I left the hospital the next afternoon. I got up and walked around as soon as I was able to throw off the anesthesia and regain my strength and that helped a lot. I also looked at the incisions the night of surgery and it wasn’t so bad. I felt the more I knew and the sooner I knew it the better. I had a good cry that night and moved on to worrying about everything else! Ha ha. They will give you pain pills and they will also have you very full of pain meds after surgery so you won’t have significant pain with this.
Please reach out to me if you have questions. I had lots of great support from other women going through this and I’d love to be there for you now.
Liked by Colleen Young, Connect Director, Wendyb
Hey @cindylb, your reply to RunningLakes went through perfectly. Thank you for such a detailed response hitting on all the major points to consider. Always good to hear from someone who has been there!
Hello Running Lakes 🙂 I had a mastectomy on my right breast April 28th. Like Cindy, I can honestly say it was a pretty simple and straightforward procedure. My surgeon (who’s wife is a breast cancer survivor and was terrific), explained that there are no nerve endings in the tissue and the procedure is relatively painless. I went home the same day. I was up the next day having breakfast with my family and at the movies the following day. Three days later I was out walking. I had a Sentinel Node Biopsy. He removed the lymph node closest to the cancer and tested it, with the understanding that if it was positive he would have to remove the rest and I would need chemo. Fortunately, the lymph node was fine and the cancer was localized. I am very happy with my decision to have the breast removed. Having a second lumpectomy (had one first to find the cancer) would have meant radiation and chemo. My tissue is dense which would have meant always second guessing my screenings. I had a huge support group. People were signed up to bring dinner for 3 weeks. I cancelled after the first week. Really, I felt fine and just wanted to get back to my “new normal”.
I am not the first in my group to have breast cancer. I was out for dinner and drinks the week before with my friends. Lots of calls and texts. I worked out up until the day before my surgery. I was also very open about it. Often, the first instinct is to internalize but being open and honest with my friends, family, and clients was very positive. The day my bandages came off, my surgeon called me and my girlfriends brought me desert and wine. While a bit of a shock, he did a great job and I quickly moved on. You will too. In three months I have gone from thinking this was going to permanently alter my life to leaving my prosthesis in the car and not losing my mind over it.
One suggestion that really helped me: Order a drain holder. I had a mesh version to wear in the shower so I could use both hands, and a nice floral version that I wore EVERYWHERE. This was a game changer for me ~ I was at the grocery store, in a sushi bar and at the mall a week later and nobody could tell I was wearing a drain. Here is the link for mine. The woman who owns the company is a four time cancer survivor and she gets it.
http://www.medicaldraincarrier.com/about.html. This pic was taken 5 days post surgery on a walk. I am wearing my compression bra and foam insert.
I wore a compression bra and foam inserts which were very comfortable. It you get swelling from lymphadema or a seroma you can order a swell spot cushion to place under the bra when you sleep which I used. I had a seroma drained (painless) from working out and had to forego any upper body exercise for an additional 3 weeks. If you opt for reconstruction, and do not have it right away, save everything. You will need them again for reconstruction.
I am having a reconstruction – chest expander followed by implant. I opted not to have the procedure at the time of my surgery. I wanted to heal, and my daughter was coming home from college for the summer. The chest expander goes in August 7th which is step one. Approx 2 months later they will remove it and insert a implant.
I want to wish you the best of luck. Get your rest, take time for yourself and know there are a lot of people who have been there and are OK. xo Denise
Liked by Colleen Young, Connect Director, bpickartz
I have not made a surgery date yet, still viewing options . But the replies were very constructive and helpful. Thank you.
Liked by deniseestrada
You made it sound very simple ! Did you go to Mayo Clinic in Jacksonville, Fla. for this procedure ?
Thank you for this information, it gives me hope and support. Did you go to Mayo Clinic for this procedure. I , also, do not know where to go or what surgeon is skilled. ANy suggestions there ? Thank you for the above info on your procedure.
We use Kaiser in Los Angeles. I vetted my doctor carefully. Columbia Medical School grad, 15 year experience.
No, we are in Los Angeles.
Your best advice, was you had a good cry and
Sorry, my reply incorrectly . It should have said: I had a good cry and then moved on to worrying of something else. This is so important, not to let this surgery take over your life. Move On quickly.
I had a right skin sparing mastectomy of the right breast with immediate placement of an expander for reconstruction in 2013. I had never had a major surgery before and was worried about the cancer, but also about being put under anesthesia, how I would handle the pain, and so many other things. I want to reassure you that the staff at Mayo were amazing in the way they informed and supported me though the whole process. Do not be afraid to ask questions or tell them about your concerns. I am still supported by the fantastic staff at the Breast Center and they feel like friends. Another thing I wish I would have known in those early days: right now all you can think about is the cancer, and how afraid you are. This does not last, and you will be able to forget about it for longer and longer periods as time goes on. I wish you the very best in your journey
Liked by Colleen Young, Connect Director
@bespeak50 I am so glad that you posted your experience here on Connect. It is so helpful for people to hear from others who have been there. You mention that you are still supported by the staff at the Breast Cancer. Can you tell us a bit more about this? What post-treatment support have you found useful?
k1958 – I had a right mastectomy 7 years ago this week – at that time it was a straight forward surgery where they found out how extensive the cancer was which was good to know. The only thing I had trouble with was the drainage tubes that were in place for a few weeks after. I was fortunate to have much support from family and friends and also through a program at the hospital there. I didn’t have reconstruction just because I didn’t want more surgery. I am so far 6 years cancer free!
Liked by Colleen Young, Connect Director, Jamie Olson
So glad you have good news. Did you have Chemo afterwards or just the hormone pill to take. Also, I wonder what age group are you in.
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