Introductions

Hi everyone

 

Just wanted to introduce myself in the hope that I can become an active member in the forum and hopefully make some friends. I have been registered here for some time but have not been active so please bear with me.

 

I’m Kath, from Essex. I’m 40, single (no kids) and was diagnosed with Lobular Breast Cancer in April 2018. I had a right sided mastectomy at the beginning of June. The next 6 months leading upto Christmas was an absolute rollercoaster. I was due to start adj chemotherapy but following a CT & PET scan post-operatively, I was told that I had inflammed chest nodes and shadowing on multiple bones so this was withdrawn. I was provisionally (90% certain) diagnosed with secondary breast cancer & I was started on Letrozole in July with a view to starting palbocyclib. This was followed by numerous scans, investigations, a chest node biopsy and a bone biopsy(as there were a few inconsistencies) as a means of confirming the diagnosis. However amazingly the biopsy results all came back clear, and before Christmas I was told I am back to being Primary and cureable. The condition they found incidentally on the scans was actually a condition called Sarcoidosis with boney involement (its rare). Obviously I am over the moon about this, but due to this situation I have been in limbo for a long while and have not really been able to join in with the support networks because of an unconfirmed diagnosis. Its pretty much impossible to know where your head is at when you don’t know what you are dealing with. 

 

Can anyone advise me of standard stuff to expect when undergoing radiotherapy please?  Does anyone attend any support groups in essex/herts/cambs they can recommend?

Best Wishes

Kath :slight_smile:

Hi safarikath,

Welcome to the forum. What a rollercoaster you have been through. It must have been so stressful for you.

I have found radiotherapy by far the easiest part of the treatment. My history is that I am 51, and found a lump in my left breast last May. This was triple positive breast cancer and a large area of dcis. I had neo-adjuvant chemo, which completely resolved the invasive tumour, but I had to have a mastectomy due to the large size of dcis. I have three weekly Herceptin injections til the end of June, and I take tamoxifen.

I had fifteen radiotherapy sessions. I drank at least two litres of water a day,and used a fabulous cream, Biafine, from Amazon. It was recommended from a lady on this forum, and I had no soreness at all. I had a little bit of redness on the last few days, and it was a little itchy afterwards, but nothing too bad at all. I didn’t particularly feel tired so, compared to chemo, it was a breeze!

Best of luck

Jane xx

Hi Kath

 

Have you had your rads planning session and CT scan? That will determine which area gets treated and how many sessions you have. Generally anything between 15 and 25 sessions at 5 per week is pretty standard. Your rads team should give you advice, keep checking your skin and give you any creams or dressings that you need.

 

I am in Essex too. When I was diagnosed 2 years ago, I didn’t find any local support groups, but I think one started at Colchester Hospital last year, and I believe there is also one at the Helen Rollanson cancer centre in Chelmsford. Both are monthly meetings. Sorry, I don’t know about Herts or Cambs as I am in north Essex.

 

Best wishes

 

Tessa