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Oncotype DX score 18 - Chemo or Zoladex?

24 REPLIES 24
CeliaRose
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Dear Nameste

Thank you so much for your lovely response.  You really don't know how comforting and reassuring it was to hear from you and Andrea, knowing there are ladies out there in a similar situation to me and learning more about their treatment plans and their experiences.

My tumour is grade 2 but I have one lymph node positive and that's why chemo was discussed.   However, I wanted to avoid it, if I possibly could, so that's why I did the Oncotype test.

Like you, I am on Tamoxifen (only been taking it just over a month) and so far, it's ok and no obvious side effects yet!  As you mentioned, as I haven't had the chemo, for peach of mind and moving forward, I feel I need that extra bit of protection or "safety net" which I am hoping the Zoladex will provide.

It is very reassuring to know that you are tolerating them well with not too many adverse side effects and also interesting to hear that your periods didn't stop straight away.  I think you are right I am most probably peri-menopausal (I've been having very heavy periods which, I understand, is a sign that I'm moving in that direction).  It was one of the reasons why I was wondering if it was worth having the Zoladex?  But, as you said, maybe the drop in Oestrogen might not be so severe as my Oestrogen levels are maybe lower and I hadn't thought about it in that way.

Thanks again for getting in touch.  Your reply and Andrea's have given me the confidence to discuss the Zoladex with my oncologist next week. 

I wish you well with your recovery and moving forward.

All the best,

Charlotte

CeliaRose
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Dear Andrea

Thank you so much for your response.  It was such a great comfort and reassurance to get your reply and to know that the Zoladex injections are not too bad and manageable.  After receiving your response and also Nameste's, it has given me the confidence to go ahead with the injections and I have an appointment with my oncologist next week to discuss further.  

Thanks also for the tip about the fan.  I'll definitely bear that in mind should I need it!

Regards

Charlotte 

Nameste
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Charlotte,

I hope you don't mind me replying but I saw your post and felt that my experiences may be useful to you. I was given an oncotype score of 16 so low like yourself and wasn't offered chemo. However as I had a grade 3 tumour I was offered ovarian suppression. I am 44. Like you I was reluctant to start on zoladex as I'd heard such negative side effects around menopausal symptoms and plunging myself into a 'sudden' menopause, so I started just on tamoxifen. A few months down the line I thought I would be better protected if I went for zoladex injections and started on them in October 2020. 

I can honestly say i have been fine, I do get hot flushes but they just make me feel warm and they pass after a few minutes. I've had a few nights where I have to fling the duvet off me but I'm not wet through with sweat just hot. A couple of months in I did have a day of feeling a little dizzy and nauseous which was horrid, but thankfully it passed. If you do decide to go for suppression and start on zoladex injections it might be worth knowing that it took a couple of months for my periods to stop. To begin with I had normal periods, but after the third injection they stopped and I've had nothing since. My original plan was to have an operation to remove my ovaries, but with covid still around I'm reluctant to go into hospital and since I'm tolerating the injections well I've decided to stay as I am. It also hasn't obliterated my sex drive.

Side effects are very individual, a cousin of mine had zoladex to treat fibroids and had an awful time on it, even my female GP tried to put me off going on them. I would say to you give it a go, if you suffer badly with side effects you can always stop taking it. Like you I was worried about a 'sudden' menopause, and the symptoms I might get, but I have honestly been fine. I still do yoga and exercise and don't get any joint pain, but I know this is a common side effect. No one can say exactly how it will be for you. I'd also say that given your age you must be peri-menopausal and have lower levels of oestrogen so maybe the drop in oestrogen from ovarian suppression might not be so severe?

I'm pleased to hear you didn't need the chemo, what a relief.  Good luck with whatever you decide to do. Wishing you all the best.

Nameste

AndreaM1971
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Charlotte,

 

Yes, I am receiving a zoladex injection every 4 weeks which they have advised me I will need to have for a minimum of 2 years  I have been having them for just under a year now.

 

The injection itself isn't pleasant but its over in 30 seconds. Like you I was also still having periods and even the tamoxifen didn't completely stop them.  My cancer was oestrogen fed so I decided that it was probably a good idea to shut my ovaries off if possible.

 

With regards to side effects the main one for me has been night sweats but I know it's different for everyone.  The best advice I was given was to buy a fan for the bedroom.  My husband sourced a really good eco tower fan (with a remote control) which has low energy use and it has been amazing and is what allows me sleep at night.

 

I hope all this helps but if there is anything else you want to know please just ask.

 

Take care

 

Andrea

 

 

CeliaRose
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Dear Andrea

Thank you for your response. 

My results came back last week and fortunately it was 14 so low and chemo definitely not needed. 

I’m undecided whether to have ovarian suppression now. I’m 52 but still having periods and concerned about going into sudden menopause and the side effects.  I’m taking Tamoxifen. I noticed you’re only 48.  Did your oncologist mention ovarian suppression to you? 
Regards

Charlotte 

AndreaM1971
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi,

 

Sorry for not responding earlier I've only just seen the notification. 

 

I had decided against chemotherapy due to underlying health issues but was prepared to listen to my oncologist reasoning should they decide it was in my best interest.

 

However, my overall benefit score came back as 6.5% and under normal circumstances with no health issues anything above 5 or above they would advise for chemotherapy but under Covid-19 circumstances they were looking for an overall score of 10%.  So my oncologist didnt exactly advise against chemotherapy, because the ultimate decision had to be mine, but she was happy for me not to have chemotherapy after speaking to my cardiologist and taking Covid into consideration.  

I hope you got the news you wanted but what ever the outcome I think the important thing to take from this is that you need to go in with an open mind and listen to the arguments for and against chemotherapy so that you can make an educated decision and be comfortable with it.

 

Take care and good luck. 

 

Andrea xx

CeliaRose
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Andrea

I've been looking through some old messages re: Oncotype test and I noticed your score was 22 back in March last year.  I am waiting the results of the test and I'm not sure what I'll do if it comes back borderline.  I was curious what you decided and did you have the chemo?

 

 

AndreaM1971
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Nameste

 

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

 

Andrea

AndreaM1971
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Thank you

 

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.

 

Andrea

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Andrea,

 

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,

 

Caroline

 

 

 

 

 

 

 

 

 

Nameste
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi Andrea

 

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

Nameste

AndreaM1971
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hi,

 

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.  

 

Andrea

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Thanks Susan. I have my second chemo tomorrow x

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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,

Caroline x

Susanmanchester
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Was in similar position last rads Thursday no regrets re chemo 

pinkpony
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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

Crochet-Helly
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

Hello 

 

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

Xx

 

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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

 

 

Susiewong
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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👍

CarolineMT
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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 🙂 Caroline xxx

 

 

Daylightdancer666
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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

lizandsarah
Member

Re: Oncotype DX score 18 - Chemo or Zoladex?

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.

Sue C
Community Champion

Re: Oncotype DX score 18 - Chemo or Zoladex?

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

CarolineMT
Member

Oncotype DX score 18 - Chemo or 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