Need Advice

Hi Debbie, Like you, I had a lumpectomy first which was to be followed by radiotherapy. I never questioned this, as it all happened so quickly, I just went with the flow. My lump was 4mm and the doctor said, this is what we will do, so we did it. I had no time to think things through, as my operation was 6 days after diagnosis. When the pathology came back as 21mm tumour and grade 3, they then started to talk about more lymph nodes out, and another lumpetomy, or mastectomy. I had had a bit more time to think by now, and was keen to avoid radiotherapy, especially since I now needed chemo. I chose a mastectomy and had a level 1 lymph node clearance. All nodes were clear, and so definiteley no radiotherapy was needed. I have never regretted this deicision, and right now I'm in hospital recovering from my second mastectomy and insertion of tissue expanders, and I'm really happy with my choice. I have spent the last several months thinking about this second mastectomy, and many have thought me to be crazy to consider this, but after booking myself in to have this done, I had another breast cancer scare and needed to jave a core biopsy and wait for results. This time, and last time I had normal mammograms, so it was like history repeating itself. I was very lucky, and I didn't have cancer again, but to me it was the sign I was looking for to convince me it was the right thing for me to do. So far I have no regrets. Your body is your property, and you should do what is right for you. As I saw it, I felt that I can't control if cancer comes back in my body, but I could prevent it comung back in my other breast. I am taking femara also for the next 5 or 10 years. There is no way I could have made this decision last December when diagnosed, as I needed time to digest the news and to do my research. Don't be rushed into anything. Only you can know what to do, and if you are unsure, you should give yourself time to think. Love Chris xx

Hi Jo,

 

I know how you feel regarding the waiting for treatment.  Nothing I did happened quickly.  I was on a waiting list for surgery, then chemo and it was nearly 7 months between surgery and radiotherapy.  The waiting around sure doesn't help our anxiety levels.  I am now ready to do some more research and will definitely get the book you have recommended.  The hardest part for me through all of this was having to make all the decisions myself.  No one was going to tell me or recommend to me what I should do.  I previously was very ignorant of breast cancer with no family history so the decisions were something I really stressed about and still worry about.  I chose chemo even if though it would not benefit me too much.  I managed to work through it but had about 1 week off each dose.  Radiotherapy was a breeze and I sailed through it only getting a bit tired by the third week.  I made a holiday of it on the coast and had a great time.  

All the best with your treatment

Deb

Hi Joy,

Thank you for your caution on using Evening Primrose Oil.  I have checked with my surgeon and nurse who both say it is OK but I don't know anyone else who is using it so I would rather stop using it if there is any risk.  I can't help feeling like a bit of a guinea pig.  I am now ready to arm myself with any helpful info I can get my hands on. Must admit I have buried my head in the sand previously just trying to get through it all.

Regards

 

Deb

HI Debbie - I was diagnosed with DCIS in March last year. Had lumpectomy in April 2010 however with horrid family history chose to have a bilateral mastectomy in July 10.  I was lucky that my cancer at the time was not invasive, so i had the "luxury" of being able to make all my decisions with time on my side (although really how much time is ever enough?). 

With the inisidious disease that we are dealing with, unfortunately many women do not have the "luxury" that I had, and time is of the essence.  So we make decisions at a point in time which are right for us at that time.  If we had either a crystal ball or hindsight to be able to make those decisions with, then our choices would all be "easy and right" (?!).

From a peace of mind perspective I don't regret my mastectomy decision for one moment as I always viewed my boobs as ticking timebombs so to be rid of them is such a weight off my shoulders. 

BUT no matter what I had thought of them for the last 47 years, I have days that I miss them and think that it would be nice to have a chest that was not numb, instead of boobs that I can't feel being touched.  I continually look at and feel my reconstructed boobs and wonder if I ever will really get used to them. BUT I still do not want my old ones back!

I am sure that everyone one of us have days that we "wish" for something different but we learn to live with who we are and what we have (or haven't!) got!

I have many friends that have had lumpectomys and the cancer has never returned.

However, I personally know what it's like to have a cloud hanging over your head that you just can't see past, so if peace of mind is what you need, no matter what anyone else thinks, then discuss your options with your specialist.

Keep sharing your thoughts in this forum, cause there are many ears here to listen and share with you!!

Bye Leanne :-)

HI Debbie - I was diagnosed with DCIS in March last year. Had lumpectomy in April 2010 however with horrid family history chose to have a bilateral mastectomy in July 10.  I was lucky that my cancer at the time was not invasive, so i had the "luxury" of being able to make all my decisions with time on my side (although really how much time is ever enough?). 

With the inisidious disease that we are dealing with, unfortunately many women do not have the "luxury" that I had, and time is of the essence.  So we make decisions at a point in time which are right for us at that time.  If we had either a crystal ball or hindsight to be able to make those decisions with, then our choices would all be "easy and right" (?!).

From a peace of mind perspective I don't regret my mastectomy decision for one moment as I always viewed my boobs as ticking timebombs so to be rid of them is such a weight off my shoulders. 

BUT no matter what I had thought of them for the last 47 years, I have days that I miss them and think that it would be nice to have a chest that was not numb, instead of boobs that I can't feel being touched.  I continually look at and feel my reconstructed boobs and wonder if I ever will really get used to them. BUT I still do not want my old ones back!

I am sure that everyone one of us have days that we "wish" for something different but we learn to live with who we are and what we have (or haven't!) got!

I have many friends that have had lumpectomys and the cancer has never returned.

However, I personally know what it's like to have a cloud hanging over your head that you just can't see past, so if peace of mind is what you need, no matter what anyone else thinks, then discuss your options with your specialist.

Keep sharing your thoughts in this forum, cause there are many ears here to listen and share with you!!

Bye Leanne :-)

The breast pain you talk about is probably radiation related.My boob never felt the same after radiation back in 2003.Unfortunately the cancer came back in the same spot 7years later -I was in the unlucky 8%.I had a full node clearance at the time(2003) but no chemo.I took Tamoxifen for awhile but it sooo didn;t agree with me so I stopped.I had a friend who suffered that drug for 2yrs and cancer came to her other breast anyway.So last year I had the mastectomy then chemo and now Tamoxifen for 5yrs.It seems to be agreeing with me this time and that could be because I'm over menopause.Try not to have regrets because you probably did what you felt was right for you at that time.Losing a whole boob has a much bigger impact on you at so many levels- emotionally(big reminder),sexually(no more naked!)and physically (big alteration in what you can wear).I wear a prosthesis cos previous radiation prevents me from implants-would have to have diep reconstruction.Obviously I'm grateful I'm alive and each time it was early breast cancer but I do have to live with a constant reminder.In hindsight maybe I should have had the mastectomy but I was 47 at the time and horrified about loosing a boob as much as I was about cancer.But nobody can predict what will happen so just stay vigilent with checkups and enjoy 2 boobs.The odds are in your favour that you don't have to face b cancer again.

                                         Tonya xx

The breast pain you talk about is probably radiation related.My boob never felt the same after radiation back in 2003.Unfortunately the cancer came back in the same spot 7years later -I was in the unlucky 8%.I had a full node clearance at the time(2003) but no chemo.I took Tamoxifen for awhile but it sooo didn;t agree with me so I stopped.I had a friend who suffered that drug for 2yrs and cancer came to her other breast anyway.So last year I had the mastectomy then chemo and now Tamoxifen for 5yrs.It seems to be agreeing with me this time and that could be because I'm over menopause.Try not to have regrets because you probably did what you felt was right for you at that time.Losing a whole boob has a much bigger impact on you at so many levels- emotionally(big reminder),sexually(no more naked!)and physically (big alteration in what you can wear).I wear a prosthesis cos previous radiation prevents me from implants-would have to have diep reconstruction.Obviously I'm grateful I'm alive and each time it was early breast cancer but I do have to live with a constant reminder.In hindsight maybe I should have had the mastectomy but I was 47 at the time and horrified about loosing a boob as much as I was about cancer.But nobody can predict what will happen so just stay vigilent with checkups and enjoy 2 boobs.The odds are in your favour that you don't have to face b cancer again.

                                         Tonya xx

Hi Debbie,In August  i had lumpectomy and sentinal node with tamoxifen and Zoludex hormone blockers. I feel exactly the same way you are feeling with it returning.  I am still waiting on my radiation and feel by the time they fit me in mine would have already traveled elsewhere. 

Mastectomy was out of the question for me as was chemo. If  my nodes had of been involved then things may have been different. Even woman that have their breast removed as a precaution still have this fear of cancer coming back.

I really think the fear will always be in the back of our minds but we just have to learn to be breast aware and not let it rule our lives. If cancer is going to come back it will come back weather you have breasts or not.

I brought a fantastic book (on Line) for $39 from Prof John Boyages who is a Director at  Westmead Breast Cancer Institute. He works at  Westmead Hospital in Sydney  The book is called "Breast Cancer" Taking Control. He talks about being over cautious,treatments, outcomes etc . The book is probably the best i have seen.

You can read 100 pages or so online before you decide, so have a look as it may help you as it has me.

http://www.breastcancertakingcontrol.com/About.html                                 ; Press on home button to access free chapters ok

Good luck with everything  cheers Jo xxxx

Hi Debbie,In August  i had lumpectomy and sentinal node with tamoxifen and Zoludex hormone blockers. I feel exactly the same way you are feeling with it returning.  I am still waiting on my radiation and feel by the time they fit me in mine would have already traveled elsewhere. 

Mastectomy was out of the question for me as was chemo. If  my nodes had of been involved then things may have been different. Even woman that have their breast removed as a precaution still have this fear of cancer coming back.

I really think the fear will always be in the back of our minds but we just have to learn to be breast aware and not let it rule our lives. If cancer is going to come back it will come back weather you have breasts or not.

I brought a fantastic book (on Line) for $39 from Prof John Boyages who is a Director at  Westmead Breast Cancer Institute. He works at  Westmead Hospital in Sydney  The book is called "Breast Cancer" Taking Control. He talks about being over cautious,treatments, outcomes etc . The book is probably the best i have seen.

You can read 100 pages or so online before you decide, so have a look as it may help you as it has me.

http://www.breastcancertakingcontrol.com/About.html                                 ; Press on home button to access free chapters ok

Good luck with everything  cheers Jo xxxx

Hi Debbie,

I can't find the article at the moment, but I think that Evening Primrose Oil is one of the things you can't take when you are on one of the hormonal therapies. Please check with your oncologist or breast care nurse before starting this. There are many natural therapies that work against treatment for breast cancer where the aim is to reduce the levels of hormones in our bodies.

There are many happy lumpectomy stories out there, I'm sure others will comment. I didn't have the option, had to have a mastectomy.

With love,

Joy K