New here with DCIS and gene mutation

Posted by coffeefreak @coffeefreak, Nov 12, 2020

Hi!

After a lengthy diagnostic workup, I was diagnosed with DCIS. I had a lumpectomy several weeks ago and had planned to follow this with radiation. Unfortunately, the day after my surgery (there had been an issue with my initial blood sample), I learned that I have a mutation in the CHEK2 gene. I am having a bilateral mastectomy at Mayo in less than two weeks. (The plan was to start reconstruction at that time, but given the current COVID situation, I wonder if the reconstruction should be delayed for various reasons...a whole other topic, however.)

I feel like the bilateral mastectomy is the right decision, but I'm starting to get a bit nervous about the recovery process. My recovery after the lumpectomy went really well, fortunately, but I know this will be different. I'm told that it may be up to three weeks before I can even do any work from home on my computer (is this really true?), that I won't be able to drive for at least a couple of weeks, that I won't be able to do light meal prep for two weeks, etc. Yikes - I'm trying to stock the freezer and prepare as much as I can, but it would be good to hear from those of you who've been down this road who can advise me. Oh, and I'm a stomach sleeper - I'm worried I won't be able to sleep at all after surgery. Thoughts on what to do?

Also, my friends and doctors have encouraged me to contact organizations to get support, but when I reached out to one such program, I got no response. My doctor gave me information about the "Pink Ribbon Mentors," as well as a similar program in the Twin Cities (Firefly Sisterhood), but does anyone know if they work with women in situations like mine? I'm thinking that perhaps the first organization does not, which is why they didn't contact me back. (Or it could be that everyone is just in crisis mode w/ the current COVID situation, which is totally understandable.) I'm afraid to call or email without knowing beforehand that it's a reasonable thing to do - kind of where my head and emotions are these days. Sorry if that sounds crazy.

Thanks!!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 13, 2020

@coffeefreak - Welcome to Mayo Connect! Sorry to hear the bad news. First- don’t delay treatment. I had mastectomy some years ago. They started reconstruction at the time, but completion had to be delayed due to my low blood count. Being Covid times you would be better off doing reconstruction later. I don’t think it really matters.
It will be uncomfortable. Pain was not too bad. You will go home with drains- I did not like it. That’s what I remember the most. I also remember that I went to a Graduation party a few days later! I was home for a while and started chemo before I returned to work.
Any major surgery is an ordeal that takes its time to heal.
I hope someone else here can add some more advice.

trixie1313 | @trixie1313 | Nov 13, 2020

In reply to @astaingegerdm "@coffeefreak - Welcome to Mayo Connect! Sorry to hear the bad news. First- don’t delay treatment...." + (show)

@coffeefreak, @astaingegerdm
I had partial mastectomies, going from DDD down to an A or A- (!). The affected breast seemed to be more painful and the unaffacted breast had little pain. It was explained that the affected breast needed to be reshaped as lumpectomies came from two different sides. Yes, the drains were a royal pain in the battootta! However, I slept in a LaZyBoy chair and that helped a lot. It was quite some time before I could sleep in a bed again because I also sleep on my stomach, but following surgery I had to undergo 30 radiation treatments and then had scarring from that making the ridge of the breast feel like little chunks of cement. This has been helped considerably wearing a "swell spot." I don't remember the surgery or radiation stopping me from going or doing what I wanted to do except for the fatigue, but then I would rest a best and be on my way again. I even cooked and baked! Do check your area for a support group - I started out with a breast cancer support group but found the ladies didn't want to move forward, just complained a lot of their miseries and so I found a general cancer support group who have been quite positive and I enjoy being able to attend those, at this time just being virtual due to Covid. Stay positive, coffeefreak, and you'll be just fine.

susiethomson | @susiethomson | Nov 13, 2020

Hi there I went through all the things you are talking about in 2007,@ the Mayo. I would love to have a conversation with you. Please feel free to private message me.

Colleen Young, Connect Director | @colleenyoung | Nov 20, 2020

Hi @coffeefreak, how are you doing? Did you get in touch with Pink Ribbons?

coffeefreak | @coffeefreak | Nov 24, 2020

In reply to @colleenyoung "Hi @coffeefreak, how are you doing? Did you get in touch with Pink Ribbons?" + (show)

Hi --

I got in touch with a Jewish organization that does something similar (Sharsheret). They matched me with a peer mentor. Having surgery tomorrow!!! Hoping it will go okay.

Thanks, all!

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2020

In reply to @coffeefreak "Hi -- I got in touch with a Jewish organization that does something similar (Sharsheret). They..." + (show)

@coffeefreak, that's great. I forgot about Sarsheret. They're great. Thinking about you today and want to leave this message here for you for when you're out of surgery. 🙂

coffeefreak | @coffeefreak | Nov 26, 2020

In reply to @colleenyoung "@coffeefreak, that's great. I forgot about Sarsheret. They're great. Thinking about you today and want to..." + (show)

Thank you! I had the surgery two days ago and am recuperating at home. Due to COVID, it was done outpatient, and I left the hospital that evening. I had the bilateral mastectomy and tissue expanders placed. I'm uncomfortable but definitely feeling better than I did yesterday. The pain is weird, in that it seems to pop up all over...not just my in my chest area, but in my neck, my abdomen....not sure why, although I'm sure there's a good explanation). Yes, the drains are most definitely a pain, and the bra is starting to get to me, as ridiculous as that sounds - it feels tight and itchy and just something I wish I could ditch. But at least I've managed to sleep on my back - I was pretty worried that I wouldn't be able to.

All in all, really glad that the surgery is over and done with. Thank you for all of the support!!!

trixie1313 | @trixie1313 | Nov 26, 2020

In reply to @coffeefreak "Thank you! I had the surgery two days ago and am recuperating at home. Due to..." + (show)

@coffeefreak
I had to put a little padding under the bra so it would be so bothersome. Glad you came through the surgery ok and are on the road to recovery.