Oncotype DX score 18 - Chemo or Zoladex?

Going through breast cancer treatment Hormone therapy
1

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

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Hi Caroline

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.

Best wishes 

Sue x

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Hi,

 

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.

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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

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Hi ladies,

 

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 :slight_smile: Caroline xxx

 

 

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Hi Caroline

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?. 

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Hi there

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.

xx