Unsure about radiation and scared about endocrine therapy, Abemaciclib in particular!
Hi all,
I am 40 years old. I had a skin and nipple sparing mastectory on 27 Nov and then further surgery on 4 Dec after my testing revealed a much big mass than expected. My nipple, additional skin and part of the breast capsule was taken - no cancer in any.
I was diagnosed with multifocal cancer. Largest mass 5.4 cms. Grade 1. 4 lymph nodes taken which were all clear. ER and PR positive. LVI - nil. KI67% - 1%.
I have seen an Oncologist and Radiation Oncologist this week and was also presented to the breast cancer panel a couple of weeks ago. Recommendations are possible chemo and radiation. I have done Onka Type testing and waiting on results.
I have questions in relation to:
- Radiation - to do or not to do;
- Hormone therapy - people's experience and whether to do everything recommended.
1. Radiation
Recommendations were on the fence for radiation and I have been told it is my decision, they cannot really recommend one way or another. On the one hand mass greater than 5 cms and my age, on the other, all lymph nodes clear and all good markers, given the additional surgery we have really good clearance margins, plus I will be doing hormone therapy.
The risk of secondary cancer from the radiation is scary, I am not sure about the indicators all seem pretty good save for the size. If the Onka type testing shows a low % chance or recurrence I am not sure it is a risk worth taking and putting myself through that when I also have what seems like a quiet aggressive hormone therapy plan.
2. Hormone therapy
My Oncologist has recommended - Letrozole for 5-10 years, Goserelin injections monthly for 5 years and Abemaciclib for 2 years.
The list of all of the possible side effects from these drugs and the length of time I will be on them is probably the thing I have found most difficult to process/face to date.
The Abemaciclib in particular. I was advised this is not yet on the PBS in Aust but we can get access on passionate grounds. The potential side effects with this one seem so serious and I am nervous that it seems it has not been used widely in Aust. Given all of the markers of my cancer, save for size, were all so positive I am uncertain about it.
If anyone has experience with any of these treatments and could share I would really appreciate it.
I am 40 years old. I had a skin and nipple sparing mastectory on 27 Nov and then further surgery on 4 Dec after my testing revealed a much big mass than expected. My nipple, additional skin and part of the breast capsule was taken - no cancer in any.
I was diagnosed with multifocal cancer. Largest mass 5.4 cms. Grade 1. 4 lymph nodes taken which were all clear. ER and PR positive. LVI - nil. KI67% - 1%.
I have seen an Oncologist and Radiation Oncologist this week and was also presented to the breast cancer panel a couple of weeks ago. Recommendations are possible chemo and radiation. I have done Onka Type testing and waiting on results.
I have questions in relation to:
- Radiation - to do or not to do;
- Hormone therapy - people's experience and whether to do everything recommended.
1. Radiation
Recommendations were on the fence for radiation and I have been told it is my decision, they cannot really recommend one way or another. On the one hand mass greater than 5 cms and my age, on the other, all lymph nodes clear and all good markers, given the additional surgery we have really good clearance margins, plus I will be doing hormone therapy.
The risk of secondary cancer from the radiation is scary, I am not sure about the indicators all seem pretty good save for the size. If the Onka type testing shows a low % chance or recurrence I am not sure it is a risk worth taking and putting myself through that when I also have what seems like a quiet aggressive hormone therapy plan.
2. Hormone therapy
My Oncologist has recommended - Letrozole for 5-10 years, Goserelin injections monthly for 5 years and Abemaciclib for 2 years.
The list of all of the possible side effects from these drugs and the length of time I will be on them is probably the thing I have found most difficult to process/face to date.
The Abemaciclib in particular. I was advised this is not yet on the PBS in Aust but we can get access on passionate grounds. The potential side effects with this one seem so serious and I am nervous that it seems it has not been used widely in Aust. Given all of the markers of my cancer, save for size, were all so positive I am uncertain about it.
If anyone has experience with any of these treatments and could share I would really appreciate it.
