Hi, has anyone else been in a position where they have had a hormone sensitive tumour and been offered +/-chemotherapy aswell if I want to have it? Terrible position to be put in. I'm interested in speaking to anyone in that position. what they chose to do and why. Cheers, Catherine

Hi Catherine, My cancer is hormone sensitive too.... i was told I HAD to have chemo, due to the sheer size of my cancer (7cm) and it being in my Lymph nodes..... I'm not sure why it would be 'optional' but I would definately be asking more in depth questions of your doctors as to why? Find out their thoughts and reasons and then make a decision.... It's not an easy one as chemo is tough, but a necessary evil is some cases.... an informed decision is a good one ..... Hope you find the answers you need Xx

I have hormone receptor positive her2 negative. I was told once it is in your lymph nodes (as in my case) that trumps size and type, thus needing chemo. I was told there wasn't really a choice. Good luck with the decision making, and choosing what is right for you. Jane

Hi Catherine i had hormone + breast cancer plus one lymph node positive the oncologist said he really wasn't sure what to do as it was a very small tumor and grade 1 , and just hell unlucky to find it in one of my nodes . He asked if I had any thoughts about it and I said yes , I do not want Chemo , esp being a grade 1 cancer , he said he was happy with my decision , but if I had of wanted chemo he would have given me four rounds but he agrees that Chemo for a grade 1 cancer could do more harm than good , depending on my belief , he said some people are so scared of the cancer they want the chemo , I certainly did not and new in no uncertain terms so for me it was an easy decision . Maybe just take some quiet time to yourself and follow your gut instinct with what feels right for you, I do understand your torment at being given the option to make suga a huge decision . On my first surgery when the biopsy came back , they told me they had found a cancerous lymph node and I had to decide on a axillary clearance Or not . I actually took 2 weeks out and went away to try and make my decision , I couldn't make it until I new for sure I was going to be completely ok with my decision whatever the outcome. I think it boils down to your beliefs and what type of person you are and how you want to live your life , just trust in yourself and your feel strong about whatever decision you make . so my reason for not wanting chemo was easy , I don't believe it would have been good for my body , i am 3 years down the track and doing great , I decided against tamoxifen also as I made all my decision base on my gut , and what I know about my body , everyone is different so listen to yourself Peace be with you

Hi Catherine, Mine was also hormone sensitive and I was told, due to its aggressiveness, I would need chemo ... 4 rounds over 3 months ... before radiation and hormone therapies could start. But then I was offered the opportunity to have the Prosigna test. Similar to the Onctotype DX test, which looks at 50+ genes to see if chemo would really be of any benefit. It came back today as a "No". So I got to dodge the chemo bullet. The test is offered to a particular type, so check with your oncologist. It's not cheap, but well worth it if it comes back in your favour. If the results had come back as a 50/50 chance, I would have gone the chemo route. But then I am one who wants to leave nothing to chance. Good luck with your decision and I wish you well as you travel along this journey with the rest of us. Hugs San-Dee

Hi Catherine. My cancer was hormone receptive and very small so I only had a partial and radiotherapy. The surgeon assured me I did not require chemo as it hadn't reached my lymph nodes and put me on Tamoxifen for 5 years. I got the all clear and told to stop Tamoxifen even though 10 years is now recommended. My surgeon assured me thus did not apply to patients such as myself because my cancer was so small and yet 8 months later was diagnosed with secondary breast cancer to the bones! I asked should I have had chemo at the outset but every specialist has said they would have made the same call as the surgeon. I am not so sure. I was not aware of any tests available in 2009 to determine if chemo could or couldn't help. If I did would have had that test and would have stayed on the Tamoxifen or similar for the 10years. I am now taking Arimidex and it is working well and bringing my markers down. Take care. Thanks for sharing

The difficulty of choosing optional treatment

33 Replies

narsan
Member
10 years ago
Julesy, hope you don't mind my asking but how are you finding the Arimidex, I have been put on it and am hesitant about taking it because of side effects. Would be pleased if anyone can help. Narsan
Catheriner1633
Member
10 years ago
Good advice Maryrose. Cheers, Catherine
maryroset1
Member
10 years ago
No long term affects from chemo except that my eye brows have grown back patchy.

I was given a shot the day after chemo to help with white blood cells. I went mad with hygiene and hand sanitisers whenever i touched a foreign surface and stayed clear of sick people and busy places eg. Shopping centres. I was one of the lucky ones and didnt have any complications during chemo.

Hope it all goes well for you.

Maryrose
shell-ie78
Member
10 years ago
No problem at all!!! So happy to help ?

That's great you are able to do the test. It is the perfect aid for someone in your situation.

Good luck ??

Shellie ox
Catheriner1633
Member
10 years ago
Awesome advice Shellie. I agree control what you can control and accept the rest.

I love and appreciate your honesty. that is actually really quite reassuring. I have time to think and ponder as I have just elected to do the Oncotype DX test. Not cheap but at this stage I will pay anything for peace of mind.

thanks again for responding. I've read your answers a couple of times and have gotten some good bits of advice out of it.

You're a champ!

Catherine xo
shell-ie78
Member
10 years ago
Honestly, no real physical lasting chemo effects. My memory though has never been the same. Just have to write lists and forget conversations sometimes. I do puzzles to try and help that.

In terms of energy levels I'm great. I only notice feeling a bit whacked now if I don't put my feet up and have an exceptionally busy day. Exercise has been my saviour. I was never a real runner before cancer but since finishing chemo I've taken it up more. I actually ended up jogging 16km in run for the kids in March. Not bad for finishimg chemo last June! It felt amazing and emotional.

I've personally taken the approach of "control what you can control" ie fitness, eating healthier, seeing a psycologist, yoga, mindfullness. If I do that, I accept...what will be will be.
57Pauline
Member
10 years ago
Hi Catherine,

I was diagnosed Sept 18th (only last year) and a double mastectomy on 27th Nov. My growths were very early stage and slow growing.

Lifestyle changes, hmmm …..

I would share a bottle of wine every night with my husband beforehand. My oncologist (and follow up research) said no way, a small amount every second night would be fine. So I have cut down big time.

Maintaining an ideal weight was also emphasised. I knew that I was a little over my ideal weight but it is/was do-able for me, so that is also a commitment I have made.

I also listen to the research about the effects of exercise on recurrence of breast cancer. So I now ensure that I actually DO exercise on a regular basis, rather than my previous life of "yeah, that’s enough, I’m fit.”.

I’m very aware that I’m still in early days so am not in a position to comment of the effectiveness of my decision. Another question I asked my oncologist was along the lines of if "I had a recurrence, would I know that it was because I didn’t have chemo?” Onc’s response was “absolutely not… there’s no way of knowing. She also emphasised that chemo wasn’t a 100% guarantee either that there wouldn’t be a recurrence. I needed to hear that before I could make my decision.

I’m not 100% about anything and don’t for a minute assume that what I have done suits everyone. I’m 58 years old and might feel very differently now to what I might have when my kids were little. Having said that I’m gonna be a first time grandma within a few weeks and really want to be around for a long time! So, I’ll be jogging, eating healthy food and drinking less wine to help that happen!

Thinking of you at this time

Pauline xx
shell-ie78
Member
10 years ago
I had TC too.

In relation to my hospital stay, it was all a bit full on at first and happened quickly. But then I just settled in and saw it as a bit of respite! It was worse for hubby, he had to juggle the kids!!
shell-ie78
Member
10 years ago
I just read your worries over neutrapenia and neuropathy.

I've had absolutely no issues with neuropathy but I did get admitted to hospital for neutrapenia type side effects. Basically I got some sort of virus and had a temp over 38. It turned out to be just a virus but they have to assume it's bacterial and pump you full of antibiotics. I was in hospital until my neutrophil levels rose again. As I had that episode, I then qualified for neulasta (a bone marrow stimulant [i think, memory hazy on what it actually did] injection) after each subsequent round. It costs a lot of money which is why it isn't routinely given.

I completely understand the worries about side effects. The unknown is so scary.

Shellie ox
Catheriner1633
Member
10 years ago
thanks so much for responding Shellie. That makes me feel better about chemo. i'm not good with the what if's either.

I have been reading about chemo and really scared myself. not the hair loss or nausea but about the peripheral neuropathy and neutropenic crisis that can happen at day 10.

Do you have any long term side effects from the chemo? they are talking about giving me TC chemo.