Loco regional recurrent breast cancer in lymph nodes

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hey guys, I wonder if someone can help or provide some support.

I was diagnosed with grade 3 dcis of right breast.

I had a lumpectomy and level 2 lymph node clearance, followed by another surgery 3 weeks later as they did not get clear margins.

I then had 6 rounds of FECT , but was unable to do radiotherapy that was planned due to COVID.

3 months later my collar bone had s golf ball size swelling so I contacted my oncologist who referred me for a scan.

The scan showed that the cancer had spread to my lymph nodes in my collar bone, behind my breast bone , the base of my neck and the rest of my armpit that wasnt cleared.

I have now got to do 6 to 8 rounds of capecitabine , followed by radiotherapy.

In the meantime I have excruciating pain starting from behind my shoulder blade,  radiating into my elbow, wrist and down my arm.

I have been prescribed oramorph, gabapentin and paracetamol but it all wears off very quickly.

They have put ne under the palliative care team for pain and they hope to start me on chemo in 2 weeks if my enzyme test comes back negative.

I am so very scared, tired from the pain and feel very alone. 

Is there someone out there who has been through the same and can offer me some hope?.

Sorry to ramble on, I just feel at present that I will not be able to fight this next battle xx

2

hi ,

SBC in loco regional nodes chest wall and muscles plus right lung. Second round of Capecitabine starts tomorrow plus herceptin and perjeta since Im her 2+ . Was in loads of pain pre first treatment morphine, paractamol oramorph not giving relief for long. After a week of Cape the noticeable swellings on my chest  wall could not be felt , my arm had lymphoedema and was grossly swollen has now shrunk back to nearly it pre cancer comeback size , and the pains just about gone In the day, night time is manageable and doesnt keep me awake any more . Oncologist is really happy with response so fingers crossed Cape works for you and your pain. 

My pain sounds similar to what you are going through and same area of reoccurrence, the week  I started Treatment i was in a very dark place and wanted to just cancel any intervention seeing no point, glad I didnt. Shout if you need to talk x

ann

3

Hey there, so sorry to hear you are going through such a rough time, I hope you are not on your own and have someone close for support. It sounds like I went through a similar experience. As if we aren’t going through enough (just coping with the fact that we might die sooner than we want to) having to deal with pain, especially uncontrolled pain, can get you very down, make you irritable and snappy and just overall feel terrible. Best thing I got on to is the slow release morphine based medication. I’m on MS Contin twice daily, it allegedly gives you a constant small dose over 8-12hrs. In addition to that I also take

 Panadol Osteo: x2 twice daily (especially very good for bone pain)

Pregablin: 75mg am, 150mg pm

Get on to your Drs to sort this out for you ASAP, with a good pain management plan in place, everything will seem a lot clearer, obviously you will feel better and then you can plan better.

i wish you very well, keep exercising, especially walking and take care, cheers, Claire :blossom: