advice wanted

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

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

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

Thanks Sarah,

Had mastectomy friday,  not feeling too bad.  bit of an adjustment looking at it though i am sure i will get used to it.  sometimes wish i had no other breast cos wearing a bra is a hassle at present.

 

pathology today said more ductal cancer specks so they said good that they took whole breast.  going to rest up before chemo in a couple of weeks.  I am going to see hospital physios re arm  thanks Julia

 

Hi everyone, I cannot believe that all of  you are so great and supportive. It is wonderful to read your comments to each other, and to my own posts.

I want to be a survivor like all of you and be strong. You are giving me the greatest confidence to do so.

Thanks

 

Sandy

Hi Julia,

I had a lumpectomy in early December followed by a mastectomy and lower third axillary clearance 3 days before Christmas. Though no lymph nodes were involved, I had an aggressive grade 3 tumour, much larger than the small 4mm lump they were looking for. I also needed to have chemo, which I finished 3 months ago. I was very lucky and only had mild side effects from this. It was no where near as bad as I had imagined.

 I now have full movement back in my arm, and only a very small amount of numbness left under my arm. I did attend physio at the hospital, and that helped. Just using my arm helped me to regain my movement, but in the early days it did feel like I had barbed wire wrapped around my shoulder and underarm. I'm doing really well now, and contemplating reconstruction. My hair is finally starting to grow, but I still need to wear a wig or hat as it is very short, and very grey.

I had a hormone positive tumour so will need to be on Tamoxifen for 5 plus years. No obvious side effects from this, though the hot flushes are no fun. I've had these for several years now, so really can't blame the Tamoxifen.

 

Hope all goes well for you.

Chris

thanks Tonya, I will try that one.  off to physio tomorrow.

Julia

Hi Julia,

I had 4 cycles of chemo with 3 week intervals. The drugs I had were Taxotere and Cytoxan. I enjoyed good health during this time with no related low white cell count illnesses. For me, the side effects would be there for about 8 days, but as mentioned before, nothing too bad. My suggestion to you would be to take all the anti nausea drugs that they give you, as it is easier to prevent nausea, than to treat it once it comes. My oncologist was keen for me to take these drugs as prescribed as he said they worked well, and I have to agree.

One side effect that I did get on about day 4 was a hyper- sensitivity around my mastectomy scar. It would always settle down within a day or so, and lessened in intensity with each cycle. Now, apart from numbness my scar is not causing me any grief. I kept it covered for about 6 weeks with steri strips, and now massage with vitamin E oil daily, and have only a very thin scar visible.

Good luck with your chemo. Do you have a start date yet, and what drugs will you be having?

Chris