I have just joined this forum and like what I see in the community, so I thought I might introduce myself. I am 57 and have recently been diagnosed with IBC Triple negative. My journey started in December 2016 when I was referred by my GP to the local hospital cancer suite. They performed the usual test, screening and biopsy. I was given the all clear just before Christmas, I was delighted but still needed an answer to my symptoms which were though to be lymphoma of my left breast. My excellent consultant wasn’t happy to discharge me and wanted to perform an MRI. This showed a problem and she performed more (11 in total) guided biopsies with ultra sound. I returned in the new year to be given the devastating news. The following day I had sentinel node biopsy, which has shown the presence of spread to the underarm lymph nodes and will require a full clearance when I have mastectomy surgery after chemo. I have done some research and know this is not going to be easy but I am staying positive and taking it a step at a time, the hardest part has been telling my 3 adult sons. I have a very supportive husband and my sister who have been there for me throughout. I am currently on my second week following my first of 6 rounds of chemo. I am coping better than expected but still unsure of the full picture ahead of me other than 6 chemo , surgery and radiotherapy. Any advice would be much appreciated.
hi Dolbycat,
So sorry you find yourself here, but welcome to the forum where there is loads of support from others going through diagnosis & treatment as well as those of us further down the road.
I did not have an IBC diagnosis, as you are aware it is one of the rarer ones, so others will be able to advise more specifically.
If you haven’t already, do look at the other forum threads such as ‘going through treatment’ & the monthly chemo threads, where there are others going through treatment at the stage you’re at who can support & advise.
Wishing you the very best.
ann x
Hi I to have IBC TN. I’m 34. I was diagnosed April 2016 had chemo FEC T, mastectomy and auxiliary clearance and then radiotherapy finishing treatment at the beginning of Jan. Unfortunately I have just found out that I have already got a reoccurrence in my skin! Not what u want to hear, sorry, but the reason I’m saying is because I found the Facebook IBC network UK page which obviously has other ladies who have our diagnosis, hard to find!! We’re one of the ‘special’ ones!! ? I’m not sure what to tell you but I’m happy to answer any questions, I’m sure you’ll have loads along your journey. It’s a long slog but you’ll get through it. Surgery was probably the easiest bit. Chemo was rough lots of ups and downs, keep an eye on your temp! And radiotherapy was OK until nearer the end when my skin started to blister and peel! But I made it and was feeling pretty good and happy with myself until I got my recent news!
hi Dolbycat and welcome to the forums. I am sorry to read about your situation, particularly after you thought all was well. I do know a number of ladies with TN IBC who are currently No Evidence of Disease and doing very well (I was hormone positive myself). I am glad you are coping ok with the chemo - that is usually the hardest bit. If you use facebook there is a support group for those diagnosed with IBC. if you would like to join you will be able to speak to a number of people who are also currently going through treatment. It will be more active than this board (I do try and pop on regularly, but I know most people who are well are not active on the forums)