Unsure about radiation and scared about endocrine therapy, Abemaciclib in particular!
TamiOc
Member Posts: 5 ✭
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.
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Comments
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Hi @TamiOc
I had a large lobular cancer ER positive.
I had a mastectomy and then 28 sessions of radiotherapy followed by Letrazole.
Rafiotherapy wasn’t too bad ( if you have it ask for mepitel) Letrazole have me joint pain and trigger thumb.
Many ladies on it and have very little in the way of side effects you don’t know until you take it but it has a high success rate in preventing the cancer returning if you are ER positive.
Dont know about the other drug, again not everyone gets bad side effects .
Good luck .🌺0 -
@TamiOc - is it your left or right boob that is affected? Radiation is generally fairly well tolerated (i had about 20 doses) on my right boob.
If it is your left boob - there are techniques used to minimize the chance of 'overflow' chance of the radiation ..... eg holding your breath whilst they give the rays, to 'separate' the various organs nearby. Ask your Onc about that. The Mepitel will also help protect from burning.
The Rads just mops up some of the randoms that the surgery may have missed & is usuallly nothing to be afraid of.
I am not familiar with the Abemaciclib .... ask your Onc about any grounds for compassionate grounds .... when my husband was on specific chemo back in 2010 ... it also wasn't on the PBS - but the week he started, it was 'covered' ... so miracles still do happen! xx. Fingers crossed
Re the hormone treatment - Letrozole is almost considered the 'gold treatment' for BC - and not everyone gets side effects - so it is well worth trying it for a few months to see how your body reacts to it ... and then make an informed decision xx
take care, and all the best with your decision making x0