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New here with DCIS and gene mutation
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!!
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Hi @bettyjpt. I'm new here, and I'm glad you mentioned the dates. I wonder if there is anyone here in 2023?
Thinking of Mayo Clinic in Jacksonville and was wondering if anyone had experience with them and perhaps experience with staying at Hope House?
I was diagnosed with invasive ductal grade 2, same as you. The tumor is .9cm with Lymphovascular invasion present. (whatever that means). Of course I got lab results on a friday off of the computer and it's a holiday weekend so the doctor's office hasn't called me. My local medical care seems kind of backward and incompetent and I'd like to know about people's experiences with the Florida Mayo Clinic? --Thanks.
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1 ReactionBetty,
I am here, and I just joined. I just got my first abnormal mammogram. Instead of doing the recommended "spot magnification" and ultrasound in the backwater city of Memphis, I am wishing to see one of Mayo's breast specialist physicians and move on from there.
I called them and the said the scheduler will reach out on Monday. My health is everything. If something is wrong, I want it diagnosed at Mayo. I, too, would like to know other women's experience with their breast team. How far are you from Jacksonville?
So sorry to read about your diagnosis. Let me know if you decide to schedule with them.
Barbara
Hi Barbara, I thought I’d check in. Did you talk with a scheduler at Mayo Clinic? How are you doing? What are next steps for you?
I have an appt at Vanderbilt in Nashville this week. I decided at this point to hold off on Mayo simply because of the distance. But I will keep it on the back burner. I have not had additional imaging, so I am still in the dark.
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1 ReactionI'll be thinking of you as you prepare for your upcoming appointment. Please post what you learn (if you want, of course). 🙂
Colleen, I feel like I dodged a bullet. I had magnified imaging of the area on Friday as suggested by the first radiologist.
The MD/PhD at Vandy read the findings as completely normal. And he compared the images to a whole bunch of previous ones. The finding was so normal that I was told I did not need the ultrasound the first radiologist recommended.
Apparently there are radiologists who over-read their films. I will obviously not return to the first clinic for any reason.
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2 ReactionsHi there
I'm so sorry you're on this path. I took have the CHEK2 gene mutation, from my mother's side of the family, a lot of females with breast, colon & thyroid cancer. And after my diagnosis, I was told I had DCIS& was also presented with double mastectomy with immediate reconstruction. I was 49 at the time. It's been a year & yes recovery is hard, I won't sugar coat it. It was 6-8 weeks before I could do anything. So I prepped before surgery. Frozen meals, deep cleaned house, got meds ordered for mail, etc. My husband helped when he could too. Drain tubes were the worst part. I had 2 on each side. I am a side sleeper, but I couldn't lay flat in bed for 6 weeks. So I slept in the recliner in living room. But I managed ok. Yes it does take a while to heal from a surgery like that, but it is doable. I'm proof. I go to Occupational Therapy weekly for lymphedema in both arms, shoulder blades, chest & throat. It was a year & 4 months after my breast surgery that they found a cancerous nodule on my thyroid so due to the gene mutation I chose to have it removed too. I'm being closely monitored by my medical team. I go for my 2nd Pet scan this Tues just to make sure they aren't missing anything. I hope you get the answers you need & don't feel like you're alone. I too felt alone & reached out on this Mayo Forum & found support & advice.
Good luck to you!