Good morningThis is my first post.I was diagnosed with Multi focal Invasive Lobular Carcinoma 20 Nov 2019. Was recommended by my specialist to have a Lumpectomy but I decided on a Mastectomy with full breast reconstruction of left breast. Turns out besides the main tumor being 35mm but there was 2 small other tumors nearby of 1mm. Two sentinel lymph nodes were also clear so it had not spread to other parts of my body.Given the size of the main tumor and that is was close to the superficial margin I was recommended to see a Radiation and Chemo Therapist Oncologist. At this stage I have been told I may not need Radiation, yet to be confirmed. Upon seeing the Chemo Oncologist I have to take Hormone Therapy, which is tablets. She also suggested to think about Chemo treatment. The Chemo can lower the risk further of the Cancer not coming back in other parts of my body. I am a low risk of 1-3%. It is my decision to make. I can't take the tablets until I decide if I need Chemo or not. The treatment would consist of 1 treatment every 3 weeks for 4 months (by drip). I can't decide whether to have the Chemo or not. I would be on the TC Chemo. I have looked at all the side effects and wondering if anyone else has been in the same situation as me.Thank you!Mary Anne

Hi @Mary_Anne_2020, Like @BewilderedButHopeful I had the Oncotyoe DX test as it was inconclusive as to whether or not I needed the chemo. Result came back which lead to me having chemo - which was a bit of a shock as I was sure it would confirm i didn't need it. II was told iI would be on TC - every 3 weeks for 4 rounds - that was early November. I was really freaked out waiting to start but once I had the first round found it not to be as scary as I thought. I had read all about the side effects and have got to say I got through it without any real problems. Main problem I've got is Cankles - started after the 3rd round and nearly railroaded my final round as they had to send me for scan to check I didn't have a dot but it was only good old cankles so went ahead.Final round completed I have major cankles (shoe diva alert! finding it difficult to wear my heels ) and am a bit more tired but thats it - so all I can say is yes there are a lot of side effects but you may get some or you may get none we are all different.Its so much easier when the decision is made for you, but whatever you decide to do it will be what is best for you.Good luck & best wishes

Dear @Mary_Anne_2020 It’s hard isn’t it? I wasn’t given much choice about chemo (given we all have a choice, we can all say no). But chemo for me was proposed as essential and I am (almost) happy that it was, as it’s a hard decision to make. Two things you may consider - if radiation is recommended, that with surgery and hormonal treatment may be effective. Second, chemo sounds very scary from the outset and is certainly not pleasant, but most of us get through it. Again, you have choices - you can not go there, given your low risk; or try it and see how you manage any side effects. You are not compelled to finish a course of chemo! Most dosage is designed to provide the maximum therapeutic outcome so may be a bit more that needed. A partial course may still have some benefit. And of course you may find that you don’t have too many side effects. So perhaps check out the radiation advice, and think further then. Best wishes.

Your oncologist will certainly favour a full dose - all I am saying is that if you find side effects too difficult, you can stop. And effort to that point may still be helpful.

Hi Mary_Anne_2020,I had the Oncotype DX test done as my tumour was strongly hormone receptive. Turned out the benefit of chemo = less than 1% as long as I do Tamoxifen. I decided against chemo. I'm currently doing radiotherapy. I had a lumpectomy. More details in my Discussions. Good luck and best wishes.

Couldn't agree more @BewilderedButHopeful. I have long argued that. It seems a total no brainer to me.I had a genomic test @Mary_Anne_2020. On the surface chemo wasn't warranted but extenuating circumstances made us check and it came back as clearly beneficial so I did it. If you can afford it, it's a very useful tool in a most difficult decision. Good luck, K xox

Chemo treatment or not | BCNA Online Network

14 Replies

Mary_Anne_2020
Member
6 years ago
Great thanks! I am now also considering whether I should leave it the way it is colourwise.
Sister
Member
6 years ago
Congratulations for getting to the other side @Mary_Anne_2020 . I found lots of fors and againsts about hair-colouring but nothing that had any science behind it so I did semis for about 18 months. It got me over that initial regrowth time. However, I have now decided that I can't be stuffed with it so I'm letting it grow out. Funny thing is, I've noticed lots of women post-initial-Covid wave doing the same thing. So many of us half-grey ombres walking around.
Mary_Anne_2020
Member
6 years ago
Treatment finished at end of April and coped well. 4 months have now gone. My hair is growing back and want to colour my hair. Does anyone know if it is safe to do. Just semi-permanent no bleach.
Mary_Anne_2020
Member
6 years ago
Thanks! Will make a decision this week.
Red1
Member
6 years ago
HI @Mary_Anne_2020 i was in a very simular situation, my team took into account my age, my family history etc, I was in a grey area for benifit but they are statistics and no one really knows for sure...I ended up doing the chemo (TC) but I stopped after three rounds as I had reactions to the infusions and a lot of other side effects but I know of other people that get through it with minimal fuss...everyone is different...it is a tough desicion to make I spoke to a lot of people including the breast care nurse and the psychologist to get my head around it all..good luck with it all!! Xx
kmakm
Member
6 years ago
Couldn't agree more @BewilderedButHopeful. I have long argued that. It seems a total no brainer to me.

I had a genomic test @Mary_Anne_2020. On the surface chemo wasn't warranted but extenuating circumstances made us check and it came back as clearly beneficial so I did it. If you can afford it, it's a very useful tool in a most difficult decision. Good luck, K xox
Dory65
Member
6 years ago
I agree with Beaglemum. Borderline decisions are hard. If my Oncotype DX results had favoured chemo, I would have gone forward with confidence that the benefits outweigh the side-effects. We need that test and other genomic assays to be covered by the PBS. It's a no-brainer. Cost benefit analysis? Surely treating people unnecessarily, plus managing short and long-term risks and side-effects is a waste of taxpayer funds.
Mary_Anne_2020
Member
6 years ago
Good news that you have completed your treatment. Has made me feel more at ease whatever I decide.
Beaglemum
Member
6 years ago
Hi @Mary_Anne_2020, Like @BewilderedButHopeful I had the Oncotyoe DX test as it was inconclusive as to whether or not I needed the chemo. Result came back which lead to me having chemo - which was a bit of a shock as I was sure it would confirm i didn't need it. II was told iI would be on TC - every 3 weeks for 4 rounds - that was early November. I was really freaked out waiting to start but once I had the first round found it not to be as scary as I thought. I had read all about the side effects and have got to say I got through it without any real problems. Main problem I've got is Cankles - started after the 3rd round and nearly railroaded my final round as they had to send me for scan to check I didn't have a dot but it was only good old cankles so went ahead.

Final round completed I have major cankles (shoe diva alert! finding it difficult to wear my heels ) and am a bit more tired but thats it - so all I can say is yes there are a lot of side effects but you may get some or you may get none we are all different.

Its so much easier when the decision is made for you, but whatever you decide to do it will be what is best for you.

Good luck & best wishes
Mary_Anne_2020
Member
6 years ago
Thank you!