Remind me - why keep the breast?

This week I started getting symptoms of pneumonitis back again - chemo gave me pneumonitis and it had cleared before rads but I was warned that I would be more likely to get it again... Despite a CT scan today showing no pneumonitis I made the decision to withdraw from rads after 12 of 28 treatments today. I will now see my onc about getting the anti-hormonals and will be amking an appt with my surgeon to organise a mastectomy... I feel so happy now I have made this decision.

This week I started getting symptoms of pneumonitis back again - chemo gave me pneumonitis and it had cleared before rads but I was warned that I would be more likely to get it again... Despite a CT scan today showing no pneumonitis I made the decision to withdraw from rads after 12 of 28 treatments today. I will now see my onc about getting the anti-hormonals and will be amking an appt with my surgeon to organise a mastectomy... I feel so happy now I have made this decision.

Hi Jen, I feel the same. I'm one of the "lucky" ones who had a lumpectomy followed by full axilliary clearence. I finished radiotherapy at the end of March and my breast is swollen and too sore to touch. It felt fine after the lumpectomy but the radiation on top of the clearance was a double whammy! I have lymphoedema of the breast and a mild case in my arm. I cannot find a compression bra which goes beyond 10 D as my breast has increased by 2 cup sizes. I find managing the swelling and discomfort very difficult and exhausting and is on my mind most of the time as I try to manage my day. My oncologist tells me I must exercise as Arimadex can cause osteoporosis but walking or any mild form of exercise causes further swelling. I'm finding it difficult to find a balance. I have regular lymphatic drainage with varying success and wonder if I've made the right choice in keeping my breast. I was told my breast may be bigger after radiation but there was no mention of possible pain. Regards Inpink xx

Hi Jen, I feel the same. I'm one of the "lucky" ones who had a lumpectomy followed by full axilliary clearence. I finished radiotherapy at the end of March and my breast is swollen and too sore to touch. It felt fine after the lumpectomy but the radiation on top of the clearance was a double whammy! I have lymphoedema of the breast and a mild case in my arm. I cannot find a compression bra which goes beyond 10 D as my breast has increased by 2 cup sizes. I find managing the swelling and discomfort very difficult and exhausting and is on my mind most of the time as I try to manage my day. My oncologist tells me I must exercise as Arimadex can cause osteoporosis but walking or any mild form of exercise causes further swelling. I'm finding it difficult to find a balance. I have regular lymphatic drainage with varying success and wonder if I've made the right choice in keeping my breast. I was told my breast may be bigger after radiation but there was no mention of possible pain. Regards Inpink xx

Hi Jenn, I agree with Esther on this one. Get a second opinion and then decide what is best for you. I was able to get a second opinion, as my Dr was part of a multi-disiplinary team, and every 2 weeks all of the surgeons, pathologists, radiotherapists and oncologsts would get together and discuss current patients and what treatments they all thought would be in the best interests of the patient. Intially, my prognosis was excellent, just like Esthers. They were looking for a low grade 4mm tumour, and lumpectomy was definitely the treatment of choice. Everyone was very surprised with my pathology, an aggressive grade 3 tumour that was 21mm in size, hence the need for more surgery and chemo. Fortunately I had no lymph node involvement, but had extensive lymphovascular invasion. This all helped me to decide to go down the mastectomy route. We are all different, and our cancers are all different. Hopefully you will be well advised. Love Chris xx

Hi Jenn I thought the same as you and after a recent diagnosis of DCIS (high grade) I opted for a bi-lateral mastectomy. I told my surgeon how I felt and she was happy for me to go down this path. Initially I had a lumpectomy and SNB in May and pathology confirmed DCIS. Last week I went back in for the big operation and started the journey of reconstruction with temp expanding implants. I have just got the results from pathology and was told there was another area of DCIS that had not been detected on the mammogram. I was always happy about my choices but this result just confirmed I had made the right decision. I think we have learnt that everyone's situation is unique and so our treatment options will vary so much. Good luck with your choices x

Interesting comments Chris.  I have 2 friends in the US who both, approx 10 years ago, had DCIS and opted for double mastectomy.  One had big boobs and ended up with smaller ones, the other had very small boobs and ended up with bigger ones -- both were delighted with the new boobs.  I'm not sure to what extent getting new boobs was a factor in their decision making.  Both have referred to their strategies as being over the top vis the cancer they actually had, but neither have had a recurrence so far.

In my case (very small tumor (5mm), type 1, clear lymph nodes, no family history) I think the radiotherapy does make sense (even though I am dreading it).

In your case Jenn, what is the story with your cancer? Was it big, how aggressive, how were your nodes?

Whatever the case, if you are thinking that a mastectomy may be a better option, I would do 2 things: go see your surgeon and put that to him/her; go see your GP and tell them what you are thinking and that you want a referral for a second opinion.  By talking it through with the GP and a 2nd surgeon, you (hopefully) will find that your views on it all will clarify.

Good luck and please post what you decide.

Esther

Interesting comments Chris.  I have 2 friends in the US who both, approx 10 years ago, had DCIS and opted for double mastectomy.  One had big boobs and ended up with smaller ones, the other had very small boobs and ended up with bigger ones -- both were delighted with the new boobs.  I'm not sure to what extent getting new boobs was a factor in their decision making.  Both have referred to their strategies as being over the top vis the cancer they actually had, but neither have had a recurrence so far.

In my case (very small tumor (5mm), type 1, clear lymph nodes, no family history) I think the radiotherapy does make sense (even though I am dreading it).

In your case Jenn, what is the story with your cancer? Was it big, how aggressive, how were your nodes?

Whatever the case, if you are thinking that a mastectomy may be a better option, I would do 2 things: go see your surgeon and put that to him/her; go see your GP and tell them what you are thinking and that you want a referral for a second opinion.  By talking it through with the GP and a 2nd surgeon, you (hopefully) will find that your views on it all will clarify.

Good luck and please post what you decide.

Esther

Hi Jenn and Esther, I also asked myself the same questions, and as my BC was not detected on a mammogram, I also decided that the risk of a recurrance was a possibility if I still had a breast or parts of a breast, so I have had them both removed, and have had no regrets. Because I haven't had any radiotherapy, I was able to have reconstruction with expanders and implants, which is a lot easier than the DIEP or TRAM flap. Radiotherapy toughens the skin, and can distort the breast shape. I actually started with a lumpectomy and was to have radiotherapy, but when the BC was bigger and more agrressive than they thought, more surgery was recommended. This had given a little time to research, by which time I decided that the mastectomy with chemo was a better option, than a second lumpectomy, chemo and then radiotherapy. Good luck with your choices. Love Chris xx