Thank you for your reply. I am currently 48 which (I have been told) pushed my oncotype score up placing me into the mid-range group.
I am currently awaiting an oncologist appointment and think I will feel better (maybe) once I have all the facts and have had the opportunity to ask all the questions I have.
However, as I have said to Caroline it is a great source of comfort knowing that I am not alone in facing these dilemmas.
Thank you again
I'm hoping I will feel better about everything once I have spoken to the oncologist. Earliest possible appointment will be next Friday but nothing I can do until I get that appointment.
However, I would say that it is a great source of comfort knowing that I am not alone facing these dilemmas.
Thank you once again.
Thanks for getting in touch, and of course sorry you are going through this. I guess the main difference between you and I is that I did have a handful of cancer cells in the lymph nodes, which is what made me lean towards and then opt for the chemo. If yours are completely clear then that's good news. For me, the purpose of Chemo was mopping up but also to put me in menopause, and I was offered Zoladex as an alternative to the chemo for that.
I think as you do have an underlying health concern the best bet is to get as much professional advice as possible, it's confusing I know - especially when the decision is put in our hands.
Nobody mentioned anything to me about risks to the heart when having chemo - I know there can be with Radio which is why we have to breathe in!
I'm sure you will arrive at the best option - sometimes it's good just to take a step back from it all for a day or two and let things become clear.
Sending love and best wishes,
so sorry to hear you are facing this dilemma. I’m in the same boat as you. I had a mastectomy last Nov. 3 lesions grade 2 and one grade 3 all small largest was 18mm with a large area of DCIS. Surgery was a success no lymph node involvement. My Oncotype score was 16 which gave me a 1.6% benefit so I was told the risk of having it outweighed the benefits. My cancer was hormone sensitive & the benefit of hormone therapy for me is closer to 5% so that part was a no brainer for me.
I’ve just finished radiotherapy as a precaution to mop up anything still there.
I’m now on tamoxifen which I could stay on for 10years (I’m in my early 40’s) but that option carries a slightly higher risk of recurrence in my case. Therefore my oncologist is recommending ovarian suppression & aromatase inhibitor tablets. I’m not keen on the injections so I’m considering surgery. Has anyone had surgery, sudden menopause & dealt with it ok? It does feel a little out of the frying pan and I wish I hadn’t been given the choice to be honest.
in terms of your underlying health condition I think you really need to discuss this with your oncologist. I was concerned about the effect of hormone/early menopause on my heart health & bone health so I contacted the British Heart Foundation & The National Osteoporosis Society both of which were very helpful & informative. I would talk to as many people as you can it’s a big decision and a tough one to make. Give yourself time, the answer will come to you. I’m sure if you opt for chemo they will keep a very close eye on you but I think you need that discussion with them.
im seeing my oncologist tomorrow so I need to give a final answer moving forwards. 🥺
best of luck with your treatment Andrea wishing you all the best with it
Thank you for your post, I am now facing the same dilemma as yourself. I had a lumpectomy in January 2020 and two nodes were removed. The test results on the lump came back as all cancer had been removed with a good margin and no signs of cancer in the lymph nodes. My oncotype rate has come back as 22 and have therefore been referred to the oncologist to discuss chemotherapy. However, I have a rare underlying health issue and am concerned about the potential damage to my heart from chemotherapy if the additional benefit of chemotherapy is only going to be something like 3%. I will also be having radiotherpay and am already on Tamoxifen. Any advice would be appreciated.
Thanks so much for taking the time to reply, for me my Oncologist said that the benefit would be 3-5% so after a great deal of deliberation I decided to opt for the chemo. Round 2 is tomorrow.
You're absolutely right, we have to do what's right for us.
Wishing you all the very best with your treatment and recovery,
I'm also new to the forum and was diagnosed in February. I had a lumpectomy in March but there were no clear margins and all 3 sentinel nodes were involved. I had the Oncotype which came back with a score of 21 and my oncologist considered that declining chemo was reasonable. I went on to Zoladex coupled with Tamoxifen for 6 weeks and then switching to Anastrazole. I had a mastectomy in June with lymph node dissection - the tumour was 61mm with multicentric lesions and a further 2 lymph involved. I revisited the option of going down the chemo route but oncologist was still confident that hormone therapy was enough so I have remained on this path. Zoladex is ok. It's not great. Combined with anastrazole the side effects for me are pretty intense but I decided that they were preferable to chemo and I'd be going through menopause at some stage anyway! I'm about to finish radiotherapy this week to mop up what was left behind. I still have mixed feelings about chemo but my oncotype confirmed it would have only 1% absolute benefit to me so it was a no brainer at the time.
You must do what you're most comfortable with - when chemo was first mentioned to me as part of my treatment I was adamant I didn't want it, hence the oncotype test.
Good luck with everything.
Thank you very much for your reply, it's much appreciated. I haven't had a conversation about "mopping up" but I guess as there were some isolated cells in the nodes I probably should!
I'm so pleased to hear that you're handling the chemo well and wish you all the best with your treatment and recovery. Xx
I had a lumpectomy june 13th and the tumour came back as grade 3 invasive but not spread.
I was offered oncotype dx test and hubby and i had already decided that if it came back borderline i would have chemo - it came back at 22 and as i am 39 it was a little over borderline.
My chemo started on 10th july so am on day 7 of 2nd cycle, will have 6 in total (3 x EC and 3 x T)
So far i have been very well, minimal sickness and tired but able to sleep well. My oncologist explained that altho there were no cancer cells in my lymph nodes they couldn't be sure it hadnt got into my blood stream, hence chemo mopping things up.
I dont regret opting for chemo and would make this choice again for myself, I will also be having radiotherapy and tamoxifen for 10 years.
Hope this helps
Thank you so much for your response, and of course it's helpful, although I'm sorry you are struggling with a similar dilemma.
After seeing my Oncologist last week I too had resigned myself to the chemo in order to "throw everything at it", and also as you said, it's a short period of hell versus five years of unpredictability. However after meeting again with my surgeon and breast nurse later in the week, I could see that they were a bit surprised I had made that choice instead of opting for the injections.
So basically I found myself back at square one, hence this post!
I hope your next meeting goes well as does your recovery.
Best wishes, Caroline x
Not sure my response will be of much help but I too have been referred to oncologist to discuss chemo or not as I'm borderline for having chemo.
I don't want to have it but my gut feeling is I will as I think they may leave final decision to me too.
I've been told in my case it's a "mop up".
My family too feel it's a no brainer and for the sake of a short period of hell... it surely is better to do all things possible to clear this disease.?
From what I've read, all the treatments can have terrible side effects.
Hope you manage to come to the right decision for you👍.
Thanks to all three of you for taking the time to reply - this has been really, really helpful.
I'm pleasantly surprised that you all sound pretty positive about the injections. For the past week I've been looking at posts online of people's experiences, and found alot of negativity, with so many mentioning quite bad mood swings and also considerable weight gain (that can't then be shifted!). Obviously everyone is different, but it's good to know it's not all bad!
Thanks again so much - wishing you a lovely week ahead 🙂 Caroline xxx
I don't have chemo nor know much about the scoring system you mentioned.
However i have experience of zoladex I've been iit two months getting third injection next week, I haven't found it too bad I'm thirty-two I haven't had much side effects maybe odd hot flush at night but that's it thought I'd see sat it miss my periods but with diagnosis and treatment not give it second thought sorry if I not much help xxxx
I've started Zolodex three months ago and I haven't had any side effects at all. I am prescribed EMLA cream as a local anaesthetic which I put on four hours before, so I haven't felt anything. You might also to ask for film dressings to put over the EMLA cream as they aren't in the box anymore!
My child was 11 at diagnosis, just started secondary school and she has coped brilliantly with surgery, chemo and rads about to start. Her only worry with chemo was seeing me with no hair, but I've kept about 40% with cold calling, and she chooses if I wear a wig or scarf when we go out together!
I was 49 at diagnosis, but I'm also considering having my ovaries removed, this means I would stop the Zolodex. I had two grade 2 and one grade one tumours, and tw'o positive nodes.I wasn't offered oncotype as it isnt available with positive nodes. I was offered a trial (Optima), but refused, it uses a similar test to oncotype, but I chose to throw everything available at it.
Welcome to the forum. I just wanted to share my experience with you regarding the zoladex injections.
I had bc in 2016, lumpectomy, chemo and rads. I had Chemo because my cancer was high grade and it was strongly recommended that I did so. I didnt mind as I wanted to throw everything at it! Plus, my children are alot older so I didn't have to worry about childcare.
I am now on letrozole and zoladex.... Nearly 3 years now. Because I'm having both it is probably hard to tell where the side effects are coming from. However, the general consensus is that letrozole is the challenge!
When I first started having the injections, I did find I felt a little unwell the next day, but that did wear off over time. I think now the only issue is having to go to the drs every month. The injection can be a little painful at times, but it only lasts a second. It helps to have the numbing cream on before.
I can't help you on having to make a choice, as I had/have both. But I just wanted to put your mind at ease regarding the zoladex.
Good morning, I'm new to the forum and could really do with some advice.
I'm 47 and was diagnosed with breast cancer in May, a mix of stage 1 and 2. I had a lumpectomy in June, which was a complete success. My surgeon removed a 35mm tumor plus surrounding pre-cancer tissue and 4 lymph nodes - lymph nodes were clear apart from a handful of isolated cells. Initially they had said it would be a case of surgery, radio and tamoxifen.
I met with the Oncologist and we decided to go for the Oncotype DX test to try and establish whether I would benefit from chemo, it came back with a score of 18.
In my head I had thought 15 or lower is no chemo and 20 or above means chemo, so obviously 18 is smack bang in the middle but still indicating low risk.
They have said it's totally my decision and I would have probably taken my chances opted for no chemo, mainly as I have 11 year old twins, and really didn't want to put them through it when they're just starting secondary school, unless I absolutely had to.
However, what they have now said is that if I don't have chemo, the alternative is to have Zoladex injections. It's the first I've heard about these and the thought of 5 years of hormone injections terrifies me!
I know Tamoxifen isn't a walk in the park either, but am I right in assuming that the side effects of Zoladex are far worse - and bearing in mind that will be on top of the Tamoxifen?
I'm so confused - up until now everything has been fairly straightforward, but I'm so afraid of making the wrong decision. Although I know there is no right and wrong, the bottom line is that I just don't feel equipped with enough information to decide!
I would be so grateful for some feedback, either regarding Zoladex, or someone who had a similar score on the test and either did or didn't opt for the chemo.
Thanks so much in advance, Caroline x