Oncotype test results - how did you decide?

[Louise Cooper-King]

Hi everyone been really useful reading your stuff post lumpectomy 3 weeks so went back for results and follow up treatment .....chemo has been mentioned all along but only as a maybe...I've now been told I have to go through chemo with herceptin I'm feeling very down it has been described as preventative chemo I'm just very scared. ... I have been very cagey about who I've told and obviously up until now no one would know .....trying to get all this stuff is hard but thanks girls at least I don't feel like I'm going through this alone xxxx

[Eggster]

Thanks Anniej. I have obviously been worrying about the results today,  and it feels one bit of good news always gets followed up  with something else to worry about! 

[Anniej]

Hi  Eggster, I think your results sound good. Don't start wondering about the unknown as obviously it's all up in the air at the moment. No one wants to do chemo, but it's done as a mop up exercise, so...if it needs doing, then so be it! One step at a time, girl. Slow and steady. Just finished my second session of chemo, and still here chatting to you . 😄👍

[Eggster]

Hi all. I have just got back from my hospital appointment after my lumpectomy, all the cancer has been got.  I have just read through the thread. The surgeon just mentioned oncotype testing to me. Chemo hasnt been mentioned to this point,  I am now having a panic.  She did say everything points towards not needing it (no lymph node involvement, not her2) but I could if I want.  So I have been merrily bimbling along thinking surgery,  radiotherapy,  and meds, but now possible chemo too (which like others was the thing I really dreaded from the start). Feeling a bit deflated after what should have been a positive appointment

[Melia]

They wouldn't give me the test as I had a micromet found in node. But was told I wouldn't have got it even if I didn't have that as I had a couple of tumours grade 3 so was told I would need chemo anyway for that reason (They were tiny the tumours only mm's)

[Maximiliana]

I should receive my oncotype score next week. Sadly today I received a call to see if my insurance covers various drugs. . I guess I was thinking that I would be on the low end of the scale. Now I'm not sure....

I've gone back to work but I'm dancing around why I've been away. I figured once I know the treatment options I would let more people at work know. The last thing I want is everyone checking in with me all the time. I know that they would be doing it out of concern but I couldn't handle the attention right now.

[SandraSussex]

Ali
Have a fabulous weekend! Sounds like fun,especially in this gorgeous weather x

Flyingarcher
Have a great, relaxing holiday! x

[AliOG]

Sandra, sorry to hear you've had to have another op and that the wait goes on but I guess it means they've got the blighter out now. Good luck with your next appointment. 

FlyingArcher, good point about holidays. I'll check it out. I've requested a meeting with our HR department as everything has been very quiet from that perspective since I've been off. I know what you mean about being frustrated and just wanting to get on with things. That's me to a tee. However, one of the things that this episode has taught me is that letting go off the reins a bit is actually quite good for me. I'm an inveterate control freak and yet I can't control cancer so I'm having to do things differently. The slow pace of waiting for results, waiting for appointments, waiting for treatment totally goes against the grain for me but I'm starting to realise that it might be better for my health in the long run if I learn to slow down. Not easy when my motto has been work hard/play hard for the past 46 years! 

having said all of that, I'm off to a festival this weekend so won't be taking it easy at all. I shall be squeezing every last drop out of my weekend! 

[Flyingarcher]

Hi Ali

is it worth you checking if holidays are included in your sick leave.  I found out mine aren't (if HR are right) so that may help.  I know what you mean by stress!  I think I need to go back because in my head I've got a window of three weeks, one of which is holiday and the next to go back on reduced hours but if I am going to have chemo then I need to get certain things sorted.  Irun a department of just me and they don't provide cover and there is only me that can do the work I do so got to get stuff done that normally I sort out in the Autumn term.

it did amuse me that there was a correlation between the head finally phoning me 'to see how you are' and an issue with a pupil....cynical, moi?

if we have chemo, our environments are not great places to be as they are hotbeds for germs so am back to replanning that.

the oncologist is going to get me in full teacher mode.  I can't do with any more of this faffing, and 'it may be' or we just might want to...   I met a lady the other day who, due to her own unfortunate circumstances, has become a guru on bc.  I mentioned my trauma regarding the HER2borderline results which were just dropped into the convo by the bc nurse last Tuesday worrying me to bits.  This lady said 'oh but you are hormone positive so it would be very unusual to be all three positive - I've never heard of that'.  Now, ok, she's not a medically qualified person but has lived with bc for eight years and knows a lot.  As someone who has to deal with my children's varios disabilities, I quite often find I know more about the conditions than some medics.  Why then didn't the bc nurse say 'it would be unusual to have all three positive' and it possibly explains why neither consultant mentioned the HER2 result to me before because statistically it was most likely to be negative so why bother causing anxiety.

anyway, rant over!😄😄

have a lovely sunny day.

[SandraSussex]

Hi Alice!
I had my lumpectomy and SNB on 30 th March and although they got a clear margin a micromet was found on the sentinal node. I opted for an axillary node dissection which I had on May 3rd! I have some cording which I've got to have physio for!

I am having results on 5th June with the surgeon and my first oncology appt is on 19 th June!

Still in limbo as the goal posts were moved as regards my treatment plan!

Sandra x

[AliOG]

Hi Sandra,

im starting to feel like getting back to normality too although the little bubble of being off work has its advantages - particularly when I'm feeling crap! Going back a few days a week isn't really an option for me so I'm probably going to have to stay off until I'm through treatment. Hopefully things will be clearer after the 8th. Sorry to hear you haven't got full movement in your arm yet. When was your op? 

Alice x

[SandraSussex]

Hi!
I am a teaching assistant and was thinking about going back for a couple of mornings after half term prior to whatever treatment is to come!
I haven't got full mobility in my left arm yet so have decided to get another certificate!
Just want to get back to some normality!

Sandra x

[AliOG]

Hi FlyingArcher,

Yes, you're right. I should definitely wait to hear what the docs have to say before I make my mind up. Work don't really want me back until I've finished all my treatment which I can understand but it means if I stay off I'll go down to half pay in September. It sounds like you're a teacher and that you're planning on going back to work before having more treatment. Is that right? I'm a lecturer and HoD so want to be around at the start of term if I can. However, the thought of going back to work right now seems impossible. I don't feel ill but I do feel emotionally raw and certainly couldn't be trusted to make any sound decisions at the moment.

Anyway, I'm going to try and enjoy the sunny weather this weekend and forget about things for a while. Cake will definitely feature in my plans!

X

[Flyingarcher]

So tricky AiiOG'.  I've been thinking of the what if type result.  As nothing seems to have been clear cut so far, I am assuming another grey area with Mr C (hoping he has now got to California - have images of a rather louche ex spy who wasn't very good at his job lounging on a plane).   I think you can only wait until you hear from the oncologist.  They will have the statistical data and I think I'd want to know then the percentage chance of reoccurance with and without chemo.    I know chemo is not a nice thought but then living with the tension of 'is it coming back' is also not nice and poss more stressful than four months of awfulness.  I don't know at the moment but what I do know is that I want to know everything next time - all possibilities.  I can't go through this level of uncertainty and woo hoo one minute and deep glooms the next because 'we've run another test...'  Totally understand about work.  I know w hen I go back week after mext, I'm going to have to bust a gut to get everything in place for when I'm not there mid June on.  If I have chemo, I'm not going to be around for start of term in September so need to sort that out.  

have had a lovely day today with a friend and fab baby.  First day I have felt not tired all day although there is a distinct undercurrent of anxiety which I am really hoping might help me lose some weight.  I've gained a few pounds with less exercise and more cake!

[AliOG]

Thanks all. That's very helpful. After a bit of an emotional morning I've decided to try and shelve the anxiety and wait until I've spoken to the oncologist. I think I'm very unlikely to agree to chemo unless there is a really compelling reason but I'll wait and hear about that other score too. Every day's a school day, eh? I really appreciate the comments. Thanks xx

[Seren]

Hi AllOG - when you have your meeting with your oncologist, ask to see your Oncotype-dx report (you should be able to get a copy for yourself too).

There are two scores on it.  The 20 you already know about and there will be a second one, which is the score they give based on you taking Tamoxifen for 5 years.  This depends on your tumour ER+ level, the higher the ER+ level, the higher the benefit of Tamoxifen (or other hormone inhibitor will be).  This score should be less, dépendant on your ER+ level.

Hope that makes some kind of sense.

As well as talking things over with me, my oncologist gave me a full written explanation of my report.

Good luck with your decision.  x

[Hollis69]

AliOG im pleased your results are back and dont blame you for being nervous.

I have done quite a bit of reading on the results and anything under 18 is low benefit to having chemo and 18-30 is mid range so you make a choice, then 30 and over chemo is a given really.

I think your result is not so bad and you could really consider your option of not having it, personally i would if mine was 20.

speak to your onchologist but read up on the tests and the results and think about what you think is best for you 🙂

Good luck and let us know what the outcome was xx

[AliOG]

Hello everyone,

I'm totally on board with holding hands and wibbling in a corner but might need to leave a hand free for beer/wine/cake.

My BCN has just phoned me and told me the results of the oncotype are back. I've got a score of 20 apparently which puts me in the undecided category, I think. I've got an appointment on June 8th now to discuss options. My gut feeling is to avoid chemo and hope that radiotherapy and Tamoxifen does the trick instead. Apart from all the side effects of chemo I can't afford to take another 5 months off work. I've already been off since mid March and I go down to half pay in September. I know finances shouldn't drive this decision but they can't be ignored either. I've got to keep a roof over our heads.

Anyway, had a massive wobble as soon as I put the phone down with the nurse even though she told me to keep an open mind until the appointment. My mind is many things right now but open probably does not best describe it. How is everyone else doing? I'd also be interested to hear from other women who have had to make this decision.... 

x

[Flyingarcher]

Hi ladies.  Shall we all hold hands and wibble in a corner.  The info on breastcancercare.co.uk is really good and has helped.  Am going on holiday on Sunday so nurse wanted to tell me now so I didn't come home to a letter - that would have been worse.  I have decided, that like everything so far, the treatment is probably less awful than the waiting and uncertainty.  If we have chemo, it's not to shrink stuff, it's to fit s secure lock and we don't want this to come back.  Feeling a bit calmer now but no doubt that will change.  

I think I am meeting with the oncologist on june 5 ish but the results won't be back by then.  I just hope they've got all the sodding cancer and don't want another op.

i've had beer.  Nice.  And pudding.  Nice.  Passes round virtual wine and cake.

[Hollis69]

Hi all,

Well I thought the surgeon had ordered the test, but when I went for a wound check the nurse said I had to wait and see the Onchologist! my appontment is not til June 7th, then will take another couple of weeks for the results to come back so feeling really frustrated!

That will be 8 weeks at least after my surgery, and feel like its weeks of not knowing anything then it will be all a rush to decide and start treatment.

I feel like its a rollercoaster ride with one minute chemo on, then hope of maybe not then probably back on so its really difficult to manage the highs and lows.

the good thing about the test is it does give you a really good understanding of what is best for your personal cancer and how it is likely to develop, so I do want it so I can decide for myself.

I agree ladies its the chemo that is my worst fear too 😞

[SandraSussex]

Hi!

I am waiting for this result as well! My appointment with the surgeon is on 5 th June and the oncologist on the 16th June!

I am gutted as I have my second grandchild due to be born in July....missed the first one as my daughter gave birth 6 weeks early and I was in Spain!
My son is also over from NZ and I haven't seen him for 2 years!

I can see me having treatment one way or another through July!

Treatment plan changed and chemo is the fear!

Sandra x

[AliOG]

I'm also waiting for this test result to come back and chemo scares the living daylights out of me. I had made the assumption the consultant would wave me straight onto radio but I've had to deal with a two week wait (and counting). I'm really not clued up about what this test is or what the decision might be that I may have to make. The waiting is very difficult, particularly when I feel like I should be getting back to 'normal', whatever that is. I'm hoping I'll get an appointment soon and will know what I'm dealing with. x

[Flyingarcher]

Just been told they've sent Mr C off for oncotype testing.  Feel gutted because had been told just radiotherapy and pills.  Had announced to world no chemo because I had been really worried about it but now that fear has come back.  On the one hand I'm glad they are doing this and making sure of everything but on the other hand , the shock and fear, not to mention the awful waiting has come back big time.   Just want to cry.

[Helen0903]

Hi Hollis yes I'll keep you updated , pls pm me anytime if you want to chat , take care , Helen xxx

[Hollis69]

Hi Helen,

I think if I had a score of 30 I would do the same 🙂 I think I just assumed the lymph nodes clear were a good sign but maybe not so good with a grade 3.

I guess I will just start to get my head around having chemo as it seems like it is on the cards, good luck and let me know how the cold cap goes as I will definitley try that too 🙂

[Helen0903]

Hi I had a 11mm grade 3 , ER pos and her - I had the Oncotype test done and my score was 30 so borderline high risk I am due to start chemo in a matter of weeks , I too was very anti chemo but after doing the test I thought it better to do it rather than not as I would not to live with the what if I did scenario , I am going to try the cold cap and have a wig on hold which is costing me over a £1000 , I am scared of the chemo but I have a son and want to be around hopefully to see him grow up ...

Helen xx

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@Hollis69 wrote:

Hi,

I was diagnosed with 3.2cm IDC grade 3 and just had theraputic mammoplasty I am ER positive HER 2 negative and lymph nodes not involved, waiting for my oncotype 2 test results.

I am expecting to come out mid/high range due to being a fast growing cancer but has anyone been in mid range on the test and how did you come to your decision?

I really am not keen on chemo and thats the one thing I dread from this journey, but at the same time I will do it if its necessary.

I felt really good that lymph nodes not involved and thought that would mean no chemo but now reading through forums im not so sure.

Just looking to see if anyone has similar circumstances 🙂 

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[Sue C]

Hi

I had grade 3 and no lymph node involvement, and was told I needed chemo. 

Chemo is not as bad as you think, very doable. Its really just a short period of time and gives you the best possible chance. I was glad it was offered to me.

Sue x

[Hollis69]

Hi,

I was diagnosed with 3.2cm IDC grade 3 and just had theraputic mammoplasty I am ER positive HER 2 negative and lymph nodes not involved, waiting for my oncotype 2 test results.

I am expecting to come out mid/high range due to being a fast growing cancer but has anyone been in mid range on the test and how did you come to your decision?

I really am not keen on chemo and thats the one thing I dread from this journey, but at the same time I will do it if its necessary.

I felt really good that lymph nodes not involved and thought that would mean no chemo but now reading through forums im not so sure.

Just looking to see if anyone has similar circumstances 🙂