Radiation Advice

Hi Sarah, Sorry for late response. Time has just got away with me eg. Work, moving house etc. all settling down now. My stitch has gone away which makes me feel it was probably related to a bit of anxiety.. I'm catching up with my oncologist next thurs.. It's funny but I'm just starting to get my shape back again since finishing treatment in August. The steroids ( during chemo) can bloat you up a bit and cause some fluid retention. I'm relieved as I was starting to get a bit down about it. The clinical trial is a drug they feel is successful in preventing high reaccurrance of breast cancer. I get a shot in my belly every 3mths then 6mths etc. I'm on it for 5 yrs. not sure if its plasebo or not ( is that how you spell it?) get an all over body scan next wk.. I'm looking forward to this Xmas as last year I spent it in bed following my 2nd chemo treatment. I sometimes find it hard to believe I actually went through that. It's surreal. You are so busy with all the treatments, appointments, and catching up with everyone that you don't really have time to think or reflect on it all. That's starting to happen to me now..oh, I got the vitamin bit mixed up, it's vitamin D which helps absorb the calcium tablets. How is your mum going and how are you going? It can be an emotional and whirlwind time so I hope your traveling ok. I"ll keep you posted when I see my oncologist and get my scans done ( all over body so need to drink that red dye! Lol ) have a wonderful Xmas and all the very best to you and your mum in 2013 . Donna ps: I must update my pic as I've now got a head full of hair!

Hi Sarah, Sorry for late response. Time has just got away with me eg. Work, moving house etc. all settling down now. My stitch has gone away which makes me feel it was probably related to a bit of anxiety.. I'm catching up with my oncologist next thurs.. It's funny but I'm just starting to get my shape back again since finishing treatment in August. The steroids ( during chemo) can bloat you up a bit and cause some fluid retention. I'm relieved as I was starting to get a bit down about it. The clinical trial is a drug they feel is successful in preventing high reaccurrance of breast cancer. I get a shot in my belly every 3mths then 6mths etc. I'm on it for 5 yrs. not sure if its plasebo or not ( is that how you spell it?) get an all over body scan next wk.. I'm looking forward to this Xmas as last year I spent it in bed following my 2nd chemo treatment. I sometimes find it hard to believe I actually went through that. It's surreal. You are so busy with all the treatments, appointments, and catching up with everyone that you don't really have time to think or reflect on it all. That's starting to happen to me now..oh, I got the vitamin bit mixed up, it's vitamin D which helps absorb the calcium tablets. How is your mum going and how are you going? It can be an emotional and whirlwind time so I hope your traveling ok. I"ll keep you posted when I see my oncologist and get my scans done ( all over body so need to drink that red dye! Lol ) have a wonderful Xmas and all the very best to you and your mum in 2013 . Donna ps: I must update my pic as I've now got a head full of hair!

Hi Sarah, Sorry for late response. Time has just got away with me eg. Work, moving house etc. all settling down now. My stitch has gone away which makes me feel it was probably related to a bit of anxiety.. I'm catching up with my oncologist next thurs.. It's funny but I'm just starting to get my shape back again since finishing treatment in August. The steroids ( during chemo) can bloat you up a bit and cause some fluid retention. I'm relieved as I was starting to get a bit down about it. The clinical trial is a drug they feel is successful in preventing high reaccurrance of breast cancer. I get a shot in my belly every 3mths then 6mths etc. I'm on it for 5 yrs. not sure if its plasebo or not ( is that how you spell it?) get an all over body scan next wk.. I'm looking forward to this Xmas as last year I spent it in bed following my 2nd chemo treatment. I sometimes find it hard to believe I actually went through that. It's surreal. You are so busy with all the treatments, appointments, and catching up with everyone that you don't really have time to think or reflect on it all. That's starting to happen to me now..oh, I got the vitamin bit mixed up, it's vitamin D which helps absorb the calcium tablets. How is your mum going and how are you going? It can be an emotional and whirlwind time so I hope your traveling ok. I"ll keep you posted when I see my oncologist and get my scans done ( all over body so need to drink that red dye! Lol ) have a wonderful Xmas and all the very best to you and your mum in 2013 . Donna ps: I must update my pic as I've now got a head full of hair!

Hi Donna, 

Great to hear your strength and fitness is gradually coming back - I'm not surprised that it takes a while. Oh ok, wasn't aware that you were in a clinical trial, how is that going? I will pass on the Vitamin A and Calcium supplements tip to Mum too, for when she is finished treatment. 

How are you going with that stitch feeling? Have you seen your Oncologist yet?

Hope all is well, glad to hear you are starting to feel normal again.

All the best, Sarah

Hi Sarah, Thank you so much! I'm feeling really good and relieved. My strength is coming back ( can take quite a few months I think following all the treatments combined eg chemo & radio) starting to get back on my bike and building up my fitness. I'm not sure if I mentioned but I'm also in a clinical trial so get checked all the time. Also Taking calcium supplements and vitamin A ( caltrate ) we need to watch our bones so much more after treatment. Just something ill mention, I have had a feeling of a stitch recently when I breath in and out. Not sure what it is but seeing my oncologist soon and will check it out. I'll keep you posted. Take care, Have a lovely w end. Donna

Hi Sarah, Thank you so much! I'm feeling really good and relieved. My strength is coming back ( can take quite a few months I think following all the treatments combined eg chemo & radio) starting to get back on my bike and building up my fitness. I'm not sure if I mentioned but I'm also in a clinical trial so get checked all the time. Also Taking calcium supplements and vitamin A ( caltrate ) we need to watch our bones so much more after treatment. Just something ill mention, I have had a feeling of a stitch recently when I breath in and out. Not sure what it is but seeing my oncologist soon and will check it out. I'll keep you posted. Take care, Have a lovely w end. Donna

Hi Chamini, 

Yes, I am finding it a bit hard being on the other side of the country to Mum and the rest of the family so I can imagine how hard it was for your family with you all the way in Japan! 

Mum is going to do as much research on radio as she can and get a few opinions - she spoke about it with her oncologist yesterday during her chemo treatment and she has passed on the name of a specialist that Mum will get in contact with when her chemo finishes so she can get another opinion and perhaps an idea as to why she may or may not need it. I guess we are all thinking the same thing - how much of it is going to affect your organs and things? That is something she will have to talk to these people about. 

Hope things are going really great for you now, thanks again for replying it has really helped me to think clearly about all this. Warm wishes, Sarah

Sarah

I asked my doctors to show me a map of the radiation effected area and how the dose go through the body. The angles they use and how much of my lung or chest cavity was going to be exposed to what amount of radiation. My biggest fear was getting too much radiation in lungs etc. They were very helpful and showed me a map of X ray intensity and depth of chest cavity profile. Mind you I had my treatment in Japan where you do not get given much information at all. So the doctors in Australia should be more helpful.   This information was very helpful to me to deciding to take 33 sessions of radiation vs 25. Since I am under 4o (going to be 38 soon) they gave much higher dose and very surface of my chest got some radiation.

Good luck to your mum with everything. My family tells me it was  harder for them to see me go through the whole treatment  from far. My parents live in Melbourne too while at the time I live in Japan. So I can appreciate how you must be feeling living on the otherside of Australia

Sarah

I asked my doctors to show me a map of the radiation effected area and how the dose go through the body. The angles they use and how much of my lung or chest cavity was going to be exposed to what amount of radiation. My biggest fear was getting too much radiation in lungs etc. They were very helpful and showed me a map of X ray intensity and depth of chest cavity profile. Mind you I had my treatment in Japan where you do not get given much information at all. So the doctors in Australia should be more helpful.   This information was very helpful to me to deciding to take 33 sessions of radiation vs 25. Since I am under 4o (going to be 38 soon) they gave much higher dose and very surface of my chest got some radiation.

Good luck to your mum with everything. My family tells me it was  harder for them to see me go through the whole treatment  from far. My parents live in Melbourne too while at the time I live in Japan. So I can appreciate how you must be feeling living on the otherside of Australia

Hi Donna, 

No, Mum's is triple negative - a little bit scarier because it is less common but very treatable and very doable! It is so encouraging to look at this group and see so many women coming through the other side. Her margins were clear, it was a 2.7cm tumour that had spread to only 1 lymph node. Grade 3, like you as well, so aggressive in that way which is why I guess I am asking questions about radio - would like her to do everything in her power to make sure it doesn't come back! In terms of her chemo regime - I know that everyone's is slightly different, depending on the individual situation. I have had a bit of a look around on the web and even a little on this Triple Negative Group and have seen some with Mum's treatment (3 rounds of FEC 3 weeks apart and 3 rounds of taxotere 3 weeks apart) but have seen others with a treatment more like yours so I suppose it's just what your Oncologist decides is best for you based on your situation. I know that the 'C' part of both regimes is the same drug! So they are probably more similar as treatments than first appears. I will pass on your chemo regime and get Mum to ask her Oncologist next week when she goes in for her 3rd treatment. Mum's white cells have been ok so far - they were a little low a couple of days before her last chemo treatment but were tested again on the day of treatment and were fine so all good there at the moment. THAT IS FANTASTIC NEWS ABOUT YOUR MAMMOGRAM AND ULTRASOUND! Very exciting, had to use caps locks! Really great news, am so happy for you. Yes, I guess the question with radio is - how much is it going to hurt you as well as help you? I'm thinking that because Mum had all her lymph nodes out like you, they would probably position it on the chest wall as well, instead of under the armpit to try and lower the risk of lymphedema. I will also pass on the 4 week time limit after chemo as well, so she will have to make a decision!

Thank you so much for your help, I can't tell you how grateful I am. How are you feeling a year out? Sarah :)