Hi,
I am new here.
I was diagnosed with DCIS. 5cm. And have to have a mastectomy. I currently have RA(rheumatoid arthritis) and has been treated with Benepali(enbrel) it works well at the moment.
I am thinking of having reconstruction same time with mastectomy but looks like hard to do it with RA. Anybody has experience?
I have anemia.
Also, I will have lymp node test. Didnt understand exactly whats going to happen as i was very shocked and didnt bring anyone with me when i saw the breast surgeon.
Not confirmed with operation day yet, but very anxious and worry about operation and how i am going to recover it and cope.
I have 8 y old.child. haven’t talked to him yet. I read about how to talk to children but still don’t know how i am going to start to talk to him. He’s very affectionate. Sill loves mummy’s cuddle but after operation maybe i can’t do it much or he will feel different from my body.
Any advice would be appreciated.
Hey there
Sorry to hear about your diagnosis - that must have been very difficult hearing the news by yourself. However sounds like you are getting speedy treatment which is great.
I’m afraid I don’t have experience with RA, but I had a double mastectomy (with immediate implant reconstruction) in January and was really worried about cuddling my kids, especially my 5 year old, as well as about how he would see/experience my body. It was tricky fur the the first 2-3 weeks as my chest/sides were uncomfortable , plus you will likely have drains attached to you for the first 10-14 days to help drain fluid from the operation site) - but now 4 weeks in I would say we are 95% back to normal. The only issue is that I still can’t lay on my side in bed comfortable for long - but I can for long enough to give him a cuddle in the morning!
Hopefully the nurses will prep you when you have a surgery date - mine gave me a drain to take home with me to show my kids so they were prepared. We were very open with them to help prepare them and normalise things for them.
Overall I have found the mastectomy much less painful and difficult than I expected - feel free to message me if you want to chat about it any more xxxx
Hi,
Thank you so much for your reply. Very helpful.
I am still waiting and finding time to talk to my child. I am thinking maybe after I see the surgeon in end of Feb. So I know what’s going on and can tell him.
Yes I will have the drain. I am not sure if I can have reconstruction(silicon) yet, but thats very helpful for sharing your experience with me.
Thank you very much. If i have more to chat about it i will message you again. Xxx
Sorry that you have found yourself here on the forum but glad you have reached out. The forum is a very supportive and helpful place to be.
I’m sorry to hear you have RA, I had a family member with it and know how hard it can be. And now a cancer diagnosis. If the lymph node test is a sentinel node biopsy, that is very common to check for spread outside of the breast.
I had a double lumpectomy (2 separate primary cancers) and sentinel node biopsy. Which in my case was clear. I have had chemotherapy, Herceptin, radiotherapy and Letrozole as I am the HER2+ and ER+. I am awaiting genetics appointment as it’s not as common to have two separate primaries.
As far as talking to your child, I think it’s best to be honest. They pick up on things so easily. I’ve worked in primary schools for over 20 years. Also let the school know so they can keep an extra eye on them. MacMillan and others suggest a variety of books for children with cancer in the family. You will need to adapt your language for their age. I’m sure your child will still continue to have cuddles, you’re his Mum. My kids are adults and still,love a good hug from Mum.
I wish you all the best for your surgery and chat with your child.
I’m so sorry to hear of your diagnosis, and it’s no wonder you’re feeling such shock.
If you want to give our nurses a call on 0808 800 6000 they’ll be able to talk through your lymph node test and how it will happen, or you could also post in our Ask our Nurses your questions topic.
As you will have already seen by the other responses, the forum is a very friendly and supportive place, and we’ll be here for you every step of the way.
