Hello everyone, I hope everyone here is doing well despite their circumstances. I was diagnosed with triple negative, stage 3 breast cancer and have the brca 2 mutation. I’ve been through 6 months of chemo and last Monday (5th) was my double mastectomy + reconstruction and removal of several lymph nodes. Two weeks on, despite the daily exercises I believe I have developed cording in the arm the lymph nodes were removed from. I still have my drains in too.
I was in pain anyway, but now more with the cording. for those who do not know, cording, also known as axillary web syndrome, can occur after surgery to remove lymph nodes and seems to arise from the trauma to the connective tissue that encases nearby bundles of blood vessels, lymph vessels and nerves. Much more research is required and I don’t think I was advised much about this prior to surgery. It is however referenced in the exercise leaflet my breast care nurse provided.
I‘m reaching out here to see if anyone else has been through this and may have some tips or advice to share with me.
Thank you in advance,
sending love and light to all,
zoe
Hi HiddenGrayDog and a very warm welcome.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Breast Cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this links >
then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
Thank you so much ! I can’t access the brca positive forum. Could you kindly send that again? Have accessed all others 
have a wonderful rest of your day.
Hi again HiddenGrayDog ....sorry about that - this link should now work BRCA Positive
That worked perfectly. Thank you very much!
your story is inspiring and I trust you are happy and thriving long may it continue for you
Thank you and I am sending supportive ((hugs)) to you on your journey.
