Oncotype DX testing

[Chick1]

Hello Sandraindurham,

I am so sorry to hear about your daughter's diagnosis. I also saw your other Post asking about Chemo experiences. I wish your daughter all the best with the rest of her treatment. I also wish you all the best,. Your efforts to support her are admirable.

Regarding the Oncotype test. I don't know if you have seen the information on this site. The link is below. You will also find links to information on chemotherapy.
https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer...

I think scores and recommendations can vary with different age groups. Your daughter is relatively young and they will try to do the best they can to prevent recurrence. Having a low score is not a guarantee against recurrence. It all can be a game of future chance that we all aim to adapt to and live with.

When your daughter has her appointment on Thursday, perhaps you can help her write down the questions she would like to ask. If you are with her, you could help write down the responses. Some people have even asked permission to record their appointments.

Even if she forgets to ask something, there should always be chances later and she should have a sort of pre chemo orientation type appointment as well. In the end, it is her decision whether to sign the chemo consent forms.

I noticed on the other Post, you were asking specific questions about chemo. I had 6 sessions of Fec T (no Oncotype test for me as triple positive). I also had clear nodes. . I could answer your questions but this may not be meaningful as your daughter may have a different regime. It will all make more sense when your daughtet finds out the specific chemo regime that is being recommended. The Oncologist should provide written information on each treatments with the main side effects listed and hopefully any rare ones so she is fully in the picture. They should also take into account existing conditions and can adapt treatments where possible.

I know it is difficult but it really has to be one step at a time otherwise all the possible short and long term side effects can seem overwhelming and too frightening.

Not everyone's nails come out and neither is everyone constantly sick. With breast cancer chemo treatment, it is very likely that all head and body hair may be lost at some point. Perhaps your daughter may be interesting in trying the cold cap before shaving her head (although I think you mentioned migraines in a previous post so not sure how this would affect them). Your daughter will be given guidance to what to look out for and when to contact the Chemo helpline or similar.

I don't think any of us would chose to go through chemo of there was another way. We do get through it and we have different experiences of it along the way.
Best wishes to your daughter, you and your family
Chick 🐥 x

[sandraindurham]

Hello, my daughter's onco type results are back with a score of 38. We are petrified, horrified and really do not know how to react.

Does anyone knowns how bad is to have a score of 38 and having chemotherapy (we haven't discussed with the oncologist yet, but will have an appointment this Thursday).

My daughter had a lobular cancer grade 3, did not reach the lymphs and was all cleaned when she had the mastectomy, but we were hoping for a score of 25 and now this!

Does anyone know how bad a 38 is and bad chemotherapy can be?

She does have other disabilities and we are quite worried about the impact of all this.

Please share with me.

Thank you

[NorthernGal]

Hi Ladies

I hope you are doing ok xx

Janemc

Hope you had a fabulous birthday  Am glad your onco appointment was positive and the back pain is being checked out. I will have rads at another hos and waiting for appointment. I think rads will start in March (hopefully). Onco also referred me for bone density test and prescribed vit D (I'm quite low so taking these now) & calcium tabs to take after bone test. Took my first Letrozole today! Let's hope any side effects are manageable.  As you said, onwards & upwards 

Big hugs and thanks to everyone. I would have been lost without this forum.

Xxx

[Janemc]

Hi Northern Hal, how did you go on with your appointment on Monday? Xx

[Janemc]

Hi all , saw the Oncologist on the 13th( my birthday!)he went through all the results and my medical history and a long chat of pros and cons, he even mentioned a chemotherapy drug that is less toxic! All the time I was bracing myself to say “I really do not want chemo “. Then he said I honestly believe Chemotherapy would be of NO benefit to you, phewwwwww such a relief, I could have kissed him 🤣So Letrazole it is 😄I also asked if even though my nodes were clear, could it have spread and as I thought he said yes 😩, I’ve had a niggling sometimes debilitating pain in my lower back, from before my diagnosis, I told him he said it is probably not connected but he has to listen to me, and will send me for an MRI, even though he thinks it will be ok, I was so pleased he listened and is taking action, if it only puts my mind at rest that’s half the battle. So onwards and upwards as they say. See how I cope with the 💊xx Thanks everyone I’m sure I’ll have other questions as I go along xxx💕

[rosietd]

So glad you got your result. Another step along the journey. Sending hugs.
xxx

[Janemc]

Thank you girls, Northern Gal hope all goes well xx
I do , at the moment, feel quite positive, I really do not want chemo, and hope the Oncologist agrees xx
Big hugs to you Northerngal and Janey2 Thank you x😘xx

[NorthernGal]

Hi Janemc

I'm glad you've received your results. My score is 22 and the onco said i wouldn't need chemo but recommended rads. My tumour was IDC, stage 2, 60mm, ER 8/8, clear nodes. I had a mx. I'm seeing the onco again on 12th Feb to discuss rads. I have haematoma which I hope will be cleared by 12th and have a separate appointment for this. Let me know how you get on please. Xx

[Janey2]

I'm glad you have finally got your results and hopefully low enough for you to feel confident in making a decision.  I hope you have something wonderful planned for your birthday xx

[Janemc]

Thank you janey2, got the results today and as I expected it is in the ‘grey’ zone . My score is 20, Sewing the Oncologist on 13th Feb, ( my birthday 😩) so putting out of my mind, I don’t want chemo, so hopefully I will get to choose as I hope the side effects outweigh the benefit in a fairly low score . Thanks for the support and hugs and understanding xxx

[Janey2]

Oh Jane you are allowed to worry on here. If it’s any consolation, I was told 2 weeks for results and had two appointment cancellations at the very last minute. It took 4 weeks to get mine back. Before I’d even sat down the oncologist said “17 no chemo”. I think it was the most worrying wait of all. In fact waiting is probably the worst bit of the whole thing, as once there’s a plan we know what to expect. Sending you a comradely hug xx

[Janemc]

No I haven’t, I’m distraught with worry, over 3 weeks now! I ring every day! The BC. Nurse was very apologetic on Friday, saying they would definitely be back this week and they will ring as soon as they’ve been discussed! Tuesday is MDT day, so I’ll be on the phone , again!, first thing ! It’s all the waiting, then if bad news another 18weeks chemo 😩, I was soooooo positive but being dragged down 😢Sorry for moaning! Bet you wished you’d ever asked 🤣🤣xxx

[rosietd]

Janemc - did you get your result?

xxx

[NorthernGal]

Hellesbelles thanks for coming back to me. I saw the onco last week and although my score is 22 I don't need to have chemo but will be having rads xx

[Hellesbelles]

Hi northern gal I think my onco score was 22 I will check my notes later. I did have chemo last year but was given the option of not having it. They will look at everything type of bc size er + etc and work out what difference it would make to you long term.
The chemo is tough but you do have days between sessions where you feel ok. I had the cold cap which worked well for me. Best of luck with your appointment x

[NorthernGal]

Thanks Janey2. Janemc, hope yr results are positive. I acknowledge the ladies who have had or going through chemo. I know it's not an easy journey. xxx

[Janemc]

Fabulous news northern gal, That sounds a lot better than Chemo.
I rang my nurse today as I haven’t heard , she is checking tomorrow and will ring me, I’ll let you know xx

[Janey2]

That's really good news NorthernGal and Jane I hope you get similar good news.  Before we got my results, I'd thought of my own cut off number for going ahead with chemo, if I were to be in the grey area.  I was lucky to have 17 as my score and before I had even sat down with the oncologist she said "no chemo".  Within half an hour I had my tattoos and radiotherapy programme, including some boosters. x

[NorthernGal]

Hi Jane have you received your results? my Onco has confirmed that I do not need chemo. He has however suggested radiotherapy followed by hormone therapy. I've had blood tests to check my vit D levels and bone density and will see Onco again end Jan. I guess rads will start some time in Feb.

Let me know how you get on. Xx

[NorthernGal]

Hi Jane thanks, will let you know how I get on. I'm in that 'grey area' that's why the test was recommended. Good luck with your results.
Xx

[Janemc]

Good luck Northerngal with your appointment tomorrow, I’m still waiting my results, hopefully today, as my trust has MDT meetings on a Tuesday.
I’m feeling quite positive I won’t need Chemotherapy, just hope my bubble isn’t bursted 😩.Let is know how you go on Jane

[NorthernGal]

Hello

I found out on Fri my score is 22.  I think this is relatively high compared to some of the posts that I've read and I'm really scared of chemo.  I've had a mx, my tumour was grade 2 stage 2, IDC, ER+, nodes are clear.

I'm seeing the onco on Weds and feel she  may suggest chemo. I'm grateful for any advice to prepare me for the appointment and for questions that I should ask.

Thanks xx

[rosietd]

Any news yet Janemc?

xxx

[rosietd]

I was diagnosed last July - scans indicated a 2cm grade 1 tumour, but after the lumpectomy, it turned out to be a 3.5 cm grade 2 tumour. My surgeon said that ten years ago, a tumour like that would have me immediately lined up for chemo, but I was offered the oncotype DX test and I took it. Score came back as 14 - so no chemo - but waiting for the result was extremely stressful. 

As hard as I found it at the time, I am glad such a test is available and was able to inform my treatment plan. But like you, I was a complete wreck when chemo was suddenly mentioned - so you are completely right to be in a tiz! 

My result came back back within about ten days and my surgeon called me as soon as he had the results. 

Keep us posted.

xxx

[Tigerfeet]

I was node negative, ER+, her2- & my cancer was stage 1, both tumours grade 2 & I had oncotype dx too. I was lucky that my score was 12 so no chemo needed. The breast care nurse rang me at 7.30 one evening with the good news despite me having a follow up appointment the next morning with the ps.

Fingers crossed for you that it comes back quickly & you are lucky like me. Mine took just under 2 weeks from when I was told they were requesting it to when I had the good news call. If you don't hear give the breast care nurses or consultant's secretary a ring.

[Janey2]

Hi Jane

i was offered oncotype test and took it.  I was being advised to consider chemo and was amazed when the results came in and chemo wasn't indicated. My surgeon said the NHS was hoping less patients would have chemo but that the cancer teams hoped it would mean people who did need it, would benefit. I appreciate I was one of the lucky ones and wish you the same X 

[Janemc]

My surgeon said it depends on the size of the tumour, if you are ER +tve and HER -tve, and node negative I think! I know it’s for my benefit in the long run, it’s just when you think active treatment is over, apart from hormone tablet, then the prospect of chemotherapy is thrown into the ring 😩I will deal with it if needed, just another BUMP in the road 😢xx

[Corrina]

I wasnt offered the onco dx type test and wander why? I had WLE and 34 lymph nodes removed.only one was cancerous. I didnt have chemo but wandering if I should have been offeredthis test? x

[ann-m]

Hi Jane,
Well of course you’re entitled to feel anxious about it as the uncertainty when waiting for results is generally worse than the results, whatever it turns out to be.
Whatever the result, it means it will inform the best treatment plan for you.
A lot easier said than done, but If chemo is recommended, then you’ll cross that bridge if you come to it.
ann x

[Janemc]

Seen my surgeon today, was told last week after mastectomy and silicone reconstruction on the 18th, nodes all clear and only need hormone tablets, now this Oncotype DX test has been brought up, 2 weeks for the results and may need chemotherapy! Now in a bit of a tiz, I realise it’s a good test, but chemotherapy is worrying me, I know I may not need it. Am I worrying prematurely? X