further surgery

thank you everyone for your comments.  I have made my decision and will let my care team know tomorrow.  I've decided that, since I was given the choice,  axillary clearance must not be essential in my case,  so I will just have radiotherapy.  

Thanks for all your well wishes and I hope everyone does well with their treatment. 

Hi Lesann, I have only recently had to make the same decision and opted to have the axillary clearance. I too was worried about the potential of Lymphoedema. To assist me in making my decision I spoke to my surgeon, medical and radio oncologists as well as attending a lymphoedema clinic at the Mater Hospital (Newcastle). All the doctors had recommended the axillary clearance as it means that I may not have to have radiotherapy post chemo (start that in a couple of weeks, oh joy!!!), however it was the physio who ran the clinic that really made my final decision easier. If I had the AC and had lymphoema it could be managed although a pain in the butt, however for me personally the risk of cancer spreading from the lymph nodes was higher and the ramifications that would entail versus lymphoedema made my choice in the end quite easy.

At 44 with a young family I still have a lot of living to do, and whilst I currently feel as though I have come out on the losing end of a street knife fight ( 1 week post surgery and AC has been more painful that my mastectomy), I don't regret my decision in any way.

All I can suggest is ask the questions of the surgeon and the rest of your medical team, but if possible speak with a physio/massage therapist who is dealing with this on a daily basis as well. You may find that some of the changes you have to make to your lifestyle to potenially prevent/manage lymphoedema you are already doing.

All the best

Therese

Hi Lesann, I have only recently had to make the same decision and opted to have the axillary clearance. I too was worried about the potential of Lymphoedema. To assist me in making my decision I spoke to my surgeon, medical and radio oncologists as well as attending a lymphoedema clinic at the Mater Hospital (Newcastle). All the doctors had recommended the axillary clearance as it means that I may not have to have radiotherapy post chemo (start that in a couple of weeks, oh joy!!!), however it was the physio who ran the clinic that really made my final decision easier. If I had the AC and had lymphoema it could be managed although a pain in the butt, however for me personally the risk of cancer spreading from the lymph nodes was higher and the ramifications that would entail versus lymphoedema made my choice in the end quite easy.

At 44 with a young family I still have a lot of living to do, and whilst I currently feel as though I have come out on the losing end of a street knife fight ( 1 week post surgery and AC has been more painful that my mastectomy), I don't regret my decision in any way.

All I can suggest is ask the questions of the surgeon and the rest of your medical team, but if possible speak with a physio/massage therapist who is dealing with this on a daily basis as well. You may find that some of the changes you have to make to your lifestyle to potenially prevent/manage lymphoedema you are already doing.

All the best

Therese

Hi Lesann

I was having surgery in DEC and taken out 1.5mm cancer cell, also 3 lymph nodes at the time, 1/3 had 0.34 micromet DCIS found.  I was proposed to have axillary clearance (ac) at the post surgery appointment, but they let me think about it.

I was very frastrated at the time, I search and search a lot of information, how big 0.34 micromet represent, and how's the side effect after ac.  I believed ac is a kind of permanent damaging to my body, buecause I'll lost a kind of "functional" feature myself.  However, according to the doctor proposal it should be the best option for me.  I was very confused and worry about my decision they let me think of.  So when the next appointment, I still think of alright : have to put the trust to the medical team.  U know what, while I was about to said go ahead with your proposal, the team decided of not going to do ac; but confirmed Chemo and Radio.  I confused again, and then my Surgeon in-charge immedicately came to explain to me, since Chemo would done a big job to flush all potential cancer, and mine was 1/3...and not worth to perform ac.  I felt relief (especially my own concern about the permanent damage); After that, I firstly met my Oncologist about the chemo schedule.  He is a very very kind and wonderful doctor, explained me in a techical and common way using different type of wordings.  He said from Onco point of will, 1/3 with 0.34 micromet, they count this mean = nothing.  So that's why they turn down ac surgery.

I am just finished my 6 course of chemo in June, now get ready for Radio on 21JULY.

Lesann, this is my case for sharing only.  Since everyone is different, and I am a public patient, which in fact met different medical personnel in different areas, so...I am quite alright with the plan for me now.

Take care and good luck

Rosanna

Hi Lesann

I was having surgery in DEC and taken out 1.5mm cancer cell, also 3 lymph nodes at the time, 1/3 had 0.34 micromet DCIS found.  I was proposed to have axillary clearance (ac) at the post surgery appointment, but they let me think about it.

I was very frastrated at the time, I search and search a lot of information, how big 0.34 micromet represent, and how's the side effect after ac.  I believed ac is a kind of permanent damaging to my body, buecause I'll lost a kind of "functional" feature myself.  However, according to the doctor proposal it should be the best option for me.  I was very confused and worry about my decision they let me think of.  So when the next appointment, I still think of alright : have to put the trust to the medical team.  U know what, while I was about to said go ahead with your proposal, the team decided of not going to do ac; but confirmed Chemo and Radio.  I confused again, and then my Surgeon in-charge immedicately came to explain to me, since Chemo would done a big job to flush all potential cancer, and mine was 1/3...and not worth to perform ac.  I felt relief (especially my own concern about the permanent damage); After that, I firstly met my Oncologist about the chemo schedule.  He is a very very kind and wonderful doctor, explained me in a techical and common way using different type of wordings.  He said from Onco point of will, 1/3 with 0.34 micromet, they count this mean = nothing.  So that's why they turn down ac surgery.

I am just finished my 6 course of chemo in June, now get ready for Radio on 21JULY.

Lesann, this is my case for sharing only.  Since everyone is different, and I am a public patient, which in fact met different medical personnel in different areas, so...I am quite alright with the plan for me now.

Take care and good luck

Rosanna

thanks for the feedback Deanne. This is exactly the information I received from my care team. I also did some research and have read the literature I was given many times. I think the fact that I have been given the opportunity to make this decision leads me to think that is not essential I have the axillary clearance so I am leaning in more towards just having radiotherapy.  It's scary though. 

I hope all is well with you now. You certainly have been through a tough journey. 

Thanks again for your help with making my decision.  Best wishes 

My situation was cancer found in 5 of 8 nodes taken at the time of my mastectomy. I then had 18 weeks of chemo and 25 radiotherapy sessions. I was told and have read the research to support that radiation to the axilla is just as effective as axillary clearance in as far as chance of recurrence etc. But having just radiation rather than axillary clearance and radiotherapy reduces your chance of lymphoedema significantly. I was happy that this was the best way to treat my situation. Radiation was also easier than another surgery and recovery and did not delay my chemo start. It is very hard when we have to make these types of decisions but I felt confident that my surgeon was recommending the treatment that would give me the best chance of a disease free future and give me a better quality of life. Good luck with whatever you decide to do. Take care. Deanne xxx

My situation was cancer found in 5 of 8 nodes taken at the time of my mastectomy. I then had 18 weeks of chemo and 25 radiotherapy sessions. I was told and have read the research to support that radiation to the axilla is just as effective as axillary clearance in as far as chance of recurrence etc. But having just radiation rather than axillary clearance and radiotherapy reduces your chance of lymphoedema significantly. I was happy that this was the best way to treat my situation. Radiation was also easier than another surgery and recovery and did not delay my chemo start. It is very hard when we have to make these types of decisions but I felt confident that my surgeon was recommending the treatment that would give me the best chance of a disease free future and give me a better quality of life. Good luck with whatever you decide to do. Take care. Deanne xxx