Hello, I am newly diagnosed, I have had two operations the first one removed a lump and 18 lymph nodes of which 4 had cancer. the second one removed some ductal type left and now I have been told that I need to have a mastectomy as they still feel that some may be left behind. This is all within a month so I am still very shocked. I am feeling very stiff in arm and have some areas of pain and some areas that I can not feel at all. After mastectomy(maybe Friday) I will need chemo, radio and hormone therapy i have been told. I would like to talk to anyone who has been there before me about their experiences. Thanks,Julia

Hi Julia, I am just a little ahead of you (but not much) and happy to share my story so far. I was diagnosed in march this year and had a large, invasive ductal carcinoma removed plus 13 nodes of which 5 were cancerous. Like you, there were still cells found in the margin, so in Sept i am having a mastectomy. My oncologist recommended chemo first to avoid any further delay and I have now had 4 of my 6 cycles. I won't pretend it has been easy, but it has been manageable and i cope with working 2 weeks out of every 3 week cycle. After my surgery on 5th Sept I will have radiotherapy followed by hormone treatment. My arm is still numb from the auxilliary clearance and I see a physio every 10 days plus do exercises at home. It has been complicated by cording which is painful but the exercises help. I can totally relate to your state of shock, that is how I felt back in March, but trust me, we seem to find an inner strength to keep us going, and this is a great site to vent, ask for advice or just feel less alone. Feel free to read any of my blogs. Take care x

Hi Julia As I was only diagnosed a week before you there is little in the way of advice that I can give. At this stage the strongest suggestion I would make is to keep visiting this site and asking and reading from the wonderful ladies who contribute and support and from whom I am learning so much. I've had a mastectomy and similar to you I had 4 cancerous lymph nodes. I have battled quite a bit with the arm sensations (helped by these ladies) on and off but have noticed that consistently doing the exercises has really helped - 3 weeks out from surgery. I have my first appointment with the oncologist on Friday and probably start chemo next week, meet radiation oncologist next week and highly likely for treatment after chemo and will have hormone blocking treatment - so sounds like we might be on a very similar journey. All the best for Friday Take care, Dette xx

Hi Julia and other ladies I had my lumpectomy on June 9th last year then had to have a mastectomy on July 13th as the tumour margins were not clear and one of my sentinel nodes was positive so 12 more lymph nodes came out all negative. My arm was so painful to begin with and did those exercises religiously also lots of moisturising to the arm with massage all helped a lot. The numbnes is now just really at the top of the arm and in the pit of my arm pit feels weird when I put on my deoderant. I recently started Dragon Boat Paddling and that has really helped me stretch the arm a lot more great thing to get in to. I also see a remedial massage lady for lymphatic massgae to my arm and chest once a month, that has helped rid me of a fluid bulge I had just at the top of my arm. Chemo was a chore I just had to do feeling yuck and loosing your hair not the nicest thing in the world but done and dusted finished that in Dec . Radiation Jan / Feb this year was much easier just an inconvenience to go every day. One tip is to make sure you moisturise your skin all the time especially your wound when it's healed. I had no skin problems at all with the radiation I still use moisturiser everyday. I started tamoxifen in March and apart from the hot flashes and sweating at times hasn't really affected me. I feel I have my life back and more as have taken up all sorts of activities and have met a whole lot of lovely people through BC. I am back at work and feel productive there So all you ladies wondering how you'll be in a year - you will be ok! Good luck on Friday Julia Sarah x

advice wanted | BCNA Online Network

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jennywren
Member
14 years ago
Hi Julia, I am just a little ahead of you (but not much) and happy to share my story so far. I was diagnosed in march this year and had a large, invasive ductal carcinoma removed plus 13 nodes of which 5 were cancerous. Like you, there were still cells found in the margin, so in Sept i am having a mastectomy. My oncologist recommended chemo first to avoid any further delay and I have now had 4 of my 6 cycles. I won't pretend it has been easy, but it has been manageable and i cope with working 2 weeks out of every 3 week cycle.

After my surgery on 5th Sept I will have radiotherapy followed by hormone treatment.

My arm is still numb from the auxilliary clearance and I see a physio every 10 days plus do exercises at home. It has been complicated by cording which is painful but the exercises help.

I can totally relate to your state of shock, that is how I felt back in March, but trust me, we seem to find an inner strength to keep us going, and this is a great site to vent, ask for advice or just feel less alone. Feel free to read any of my blogs.

Take care x

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