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This doesn't bode well, does it?

32 REPLIES 32
SandraSussex
Member

Re: This doesn't bode well, does it?

Hi Lou!
I have felt so depressed this weekend! My onc has said 90% survival at 10 years with chemo and 85% without just radio and tabs! After discussions with family they think 85% is a good prognosis and are happy for me to skip chemo!
Wish I felt better! Never wanted to choose! I will look into the test but I think radio needs to get moving!
If you want to chat at anytime pm me!

Sandra xx
Lou_Lou_Georgie
Member

Re: This doesn't bode well, does it?

Hi Sandra, I have a very similar dx to you - ER+ HER2-, 25mm, grade 2, evidence of lymphovasuclar invasion, 1 sentinel node positive all other nodes removed but clear. They have offered me the Optima Trial where they send your lump off for prosignia testing (similar to oncotype dx). They don't think I will benefit from chemo just radio and hormone therapy I am just waiting to find out what the results are and what is next for me now. It may be something you could ask your oncologist about.
Lou x
Bottyboo
Member

Re: This doesn't bode well, does it?

I think the oncotype test is only used when there is no clear answer. It's trust policy whether they include patients with lymh node involvement as I think you can have 1 or 2 nodes involved but no more. But they will probably say NHS policy as it is in your hospital. If I remember correctly it the people on the predict score thingy below 5%advantage but above 4%. I didn't know about it until afterwards and I was borderline but opted to go for chemo so probably wasn't mentioned.
Mumoftwo
Member

Re: This doesn't bode well, does it?

Sorry Lizzie, I read your message wromg, I thought your tumour was 2.15 cm hence my reply!  You could always ask at your next appointment. It's probably because the tumour is small, no nodes, er+, so chemo benefit would be very small. Chemo risks were deemed to probably outweigh any benefit for me. Hope all goes well. Michelle x

Lizzie
Member

Re: This doesn't bode well, does it?

Thanks Michelle, yes I read that too. Mine was 15 mm.  I guess I have to trust the medical team and go with it.xo

Mumoftwo
Member

Re: This doesn't bode well, does it?

Hi Lizzie, I'm pretty sure that for oncotype testing the tumour has to be smaller than 2 cm - that sticks in my mind as I was just within the criteria (my tumour was exactly 2cm). Hope this helps. Michelle xx

Lizzie
Member

Re: This doesn't bode well, does it?

Thanks Optimissy64, that has put my mind at rest - I will ask the oncologist - just waiting for my appointment to come through.
Lizzie
Member

Re: This doesn't bode well, does it?

Hi Sandra,

Thank you for the explanation.  You sound like a very strong lady, sending you a big hug xo

Jintz
Member

Re: This doesn't bode well, does it?

Try to go in positive. It's hard I know but maybe it will be good news. Good luck and let us know how you get on.
Take care
Flyingarcher
Member

Re: This doesn't bode well, does it?

I think you are absolutely right about different treatment plans a thinking 'why didn't I have that?' But the truth is, we don't know each other.  We are all different ages, sizes, lifestyles, breast density, ect ect.  Loads and loads of variables so one size shouldn't fit all.  Even with the ladies I've met in the waiting room, we are all having different stuff.

 

am knackered having got back from work.  Absolutely shattered.  Sandra - it is exhausting so don't go back too soon.  Am looking forward to the anesthetic again😄😄😄😄

Optimissy64
Member

Re: This doesn't bode well, does it?

Don't worry Lizzy. I was the same as you, no node involvement, HR+, 1.4 cm lump, didn't need chemo, just rads. Hadn't heard of oncotype testing at the time, but later on I asked my oncologist why I didn't have the test (like you, wanting to be sure they had done everything they needed to do!) and my onc said I didn't need the test because my cancer was, quote, "too good to need it"!  If you are worried ask the oncologist. I gather after surgery they have a MDT (Multidisciplinary Team Meeting) where they look at the outcome of surgery and make a decision as to further treatment. I don't think cost was an issue for mine as I was treated under my Health Insurance so if they had felt I needed the test they would have definitely sent off for it as it wold not have cost the NHS anything. I think it is natural to worry when we read on here that others have had slightly different treatment plans, but we are all different and our plans are tailor made for us. Hope you are progressing well. xxxxxxxxx

SandraSussex
Member

Re: This doesn't bode well, does it?

Hi Lizzie
My cancer had gone into a blood vessel and splashed onto the sentinal node! It was getting a bit aggressive! It doesn't mean it's in my blood stream! Non vascular means it moves via the lymphatic system.
I believe the oncotype test has only recently been available on the NHS and for those who meet the criteria.
I will put my trust in my oncologist for giving me the best outcome!
Petrified of having chemo but whatever will be will be!

Sandra xx
Lizzie
Member

Re: This doesn't bode well, does it?

Hi Sandra,

What's a vascular transfer.

 

I was grade 2 15mm, hormone receptive, no spread to lymph nodes.  I was told I didn't meet the criteria for an oncotype school test - but that doesn't seem to be the case.

No chemo, just need rads but worried that they may not have done all the appropriate testing due to cost implications.

 

I hope you are all doing ok - the waiting us the worst bit.  Xo

Mishy18
Member

Re: This doesn't bode well, does it?

Thanks for clearing up the Oncotype thing for me x that makes sense actually as they never mentioned it at post op appointment xx
SandraSussex
Member

Re: This doesn't bode well, does it?

Flyingarcher

I am grade 2 oestrogen receptive, her 2 negative! My lump was 3cm!

I have accepted I will probably have chemo because I had a vascular transfer!

So looking forward to 2018!
Sandra x
Flyingarcher
Member

Re: This doesn't bode well, does it?

Munchkin - so lovely to hear a positive story.  I quite like my surgery boob now because she's given it a lift.  I don't miss the nipple and husband says my scar looks like a smile!  i just hope she gets a wide enough margin this time.  If she doesn't then I may just say do a mx.

 

sandra - I have a micromet on the sentinel lobe but they won't do any more lymph removal.  They only do the oncotype if certain markers are fulfilled and I fulfill all of them so it may be that it's not suitable for your type of cancer ???    I think the horrible weather hasn't helped today.  It's just been a meh day.  My poor son had his gcse English retake today.  From what he said, 

I don't hold out much hope of a pass.  Hope tomorrow is better for you.  Decided that work can look after itself and I will only do what I can do and after next Wednesday they will have to cope.  Actually feeling calmer now.  So will enjoy this moment until the next phase of stomach churning anxiety.  I did have a bit of a chunter at the poor nurse about this roller coaster business.

 

 

Mumoftwo
Member

Re: This doesn't bode well, does it?

Hi Mishy, just to let you know that the Oncotype testing is only done for hormone receptive breast cancers so as you are triple negative it wouldnt be of any use for you x

Munchkin
Member

Re: This doesn't bode well, does it?

I went through two surgeries, first lumpectomy at the end January, went back for results to be told there was a bit more tumour than they thought, unfortunately because of where the tumour was situated, they weren't able to get enough healthy tissue around to check for clear margins, a mastectomy was then recommended, just to be sure, I was so upset, as my boob was healing up nicely and u could hardly even notice the scar. Anyway two weeks later had the op with immediate implant, was so pleased I had the implant, my new boob looks so perky! My results after mastectomy showed no more cancer on breast tissue, also nodes were clear, half way through chemo now, 3 more to go, then I'm all done! Tamoxifen a month after chemo.xx

AliOG
Member

Re: This doesn't bode well, does it?

Sorry to hear you're having to face more surgery but at least they're taking no chances and getting it all out this time. I know the start of a new term is a kind of watershed. I have it in my own mind that I want to be right for then but chances are cancer might have a different idea. Try and let the work thing go (if you can) while you deal with this next phase of the journey. Sending strength x

 

Mishy18
Member

Re: This doesn't bode well, does it?

Hi sorry to hear you need second lot of surgery I thought I was going to but don't however as for chemo yes, I. Confused about the Oncotype test thing alot of you have mentioned I've never been told this, I wonder if it's down to where being treated and cancer type I'm triple negative I had my post op app last Wed and still haven't got any app for oncology yet!! I've rang up and one hasn't even been made yet! I'm 3 weeks post op really concerned as it was an aggressive grade 3 isn't this waiting awful I know they are working their socks off behind the scenes for us all its just not being in control of the situation what is really getting to me!!! Xx
SandraSussex
Member

Re: This doesn't bode well, does it?

Sorry you have got to do it again! I had 2 ops.....wish they got what they needed first time!
I asked yesterday if I was having an oncotype test and was told as there was a micromet on the sentinal node i didnt qualify apparently the NHS will only fund no lymph node involvement!
I am feeling really down today....haven't even got dressed!

Sandra x
Flyingarcher
Member

Re: This doesn't bode well, does it?

As I thought, because the cancer was three times bigger than they thought, one of the margins wasn't quite enough.  She'sd cleared 0.5 mm rather than a complete mm so another op for next Thursday.  It's a smaller op for me but quite tricky for the surgeon as she has to fiddle about with just a small amount.  I'm going to tell her to remove a bit more than she thinks because that is only still a tiny amount more and I am relatively generous of nork.   Hey ho.  

 

the big pain in the butt is that I don't think they've sent off the oncotype sample yet.  There is a new protocol in place which patients need to see the oncologist to see whether they'd go for chemo if that was tecommended. Recently they had someone flatly refuse chemo which was a bit of a surprise to all and a huge waste of £2,500.  So this whole shennanigan isn't going to be sorted before end of term which means I can't plan for September.  But as my husband has said, that is my school's problem, not mine.

queenbee
Member

Re: This doesn't bode well, does it?

Flyingarcher this is the same as me. I need another op as tumour was bigger than they thought and although the healthy tissue they removed had no cancer cells in it they still want more! Not really what I was expecting to hear but she wants me to have the chemo first and then the op! X
AliOG
Member

Re: This doesn't bode well, does it?

Hi FlyingArcher,

 

Sorry to hear you're having such a hard time after a great holiday too. I really feel for you. Will be thinking of you tomorrow afternoon and keeping everything crossed. Xx

 

feelthefear
Member

Re: This doesn't bode well, does it?

Hi flyingarcher.
Have you tried ringing your bc nurse to see if she can give you any info? I had a ct scan last week but my follow up appointment isn't until next Monday with the oncologist. My anxiety levels have been ridiculous. I decided to call my nurse this morning ( I could barely hold the phone) she looked at my scan results for me and gave me the results over the phone. Good news for a change. Phew.
Maybe yours will give you info over the phone. X
Mishy18
Member

Re: This doesn't bode well, does it?

Hope everything is OK flying archer on Tuesday xx
Flyingarcher
Member

Re: This doesn't bode well, does it?

I have an appointment with oncologist on Monday week to probs talk about oncotype test and resultant treatment.  Not sure why I would then need to see the surgeon again except for further test results.  One of the bc nurseswho phoned to tell me about the oncotype test muttered something vague about perhaps the pathologist may be running more tests as the cancer was bigger.  This to me equates with 'the beastie was bigger so margins need to be wider'

 

of course it could be that she wants to talk about the oncotype test with me but I can't see why.  She's the surgeon sothat means surgery.  

 

Trying to stop feeling sick and running to the loo.  Anxiety is through the roof.

 

thank you lovely ladies for helping.  Apt is on Tuesday lunchtime.  

Mumoftwo
Member

Re: This doesn't bode well, does it?

Hi Flyingarcher, I had to have more surgery after my lumpectomy due to unclear margins, but was told at my 2 week post op appointment which you've already had so maybe your appt is just to give you the results of the Oncotype test?  To be honest, I was so worried about my wound being opened up again and thought it would be harder to heal but it didn't actually take too long at all and wasn't particularly painful. Fingers crossed for you . Michelle xx

ladybowler
Community Champion

Re: This doesn't bode well, does it?

Ladies

 

Same as optimissy I had my apt with the surgeon 5 weeks post op to give me my results and confirm that I was going to rads.

 

Flyarcher I have everything crossed for you that it is confirmation everything is still on to rads.  I know it is really difficult to do, but please try and keep your lovely holiday in your thoughts to counter the fear you are feeling.  When is the apt?

 

Sending you a hug xxxx

Flyingarcher
Member

Re: This doesn't bode well, does it?

Unfortunately have seen her two weeks post op where everything was rosy and no more cancer.  Just on to rads.  Then nurse phones before 

I go away to say mr c has been sent to oncotype testing.  Have come to terms with that.  Now this and think it must be further surgery needed.  Hopefully just boob because that healed up quite quickly compared to lymph biopsy.  Just feel sick and now can't eat.  Was looking forward to going back to work tomorrow but now feel very shaky.

Optimissy64
Member

Re: This doesn't bode well, does it?

Hi Flyingarcher

I don't want to offer false hope, but I saw my surgeon a couple of weeks after the op so he could inspect his handiwork and tell me the outcome of the surgery, and the decision of the MDT meeting that morning as to further treatment - in my case just rads. If you haven't already seen your surgeon post-op, then this appointment could just be a follow up as  mine was? Finger crossed, anyway. xxxxx

SandraSussex
Member

Re: This doesn't bode well, does it?

Hi

I am seeing my surgeon tomorrow 4 weeks post node removal! This is prior to oncology appointment on 19 th!
I am bricking it today!

Good Luck with your appointment!

Sandra x
Flyingarcher
Member

This doesn't bode well, does it?

Just got back from fab holiday, not thinking about cancer at all to find letter from hospital with appt with surgeon.  This will be a month post op.  I think this isn't good.  I think they are going to say I need more surgery.  The original tumour was bigger than they thought so bet they've done yet more tests and want to clear more margins.  Such a pain as I'm all healed up and back to normal.  Is this likely do you think or is it normal to see the surgeon a month afterwards.  I think she said she'd see me in a few months time.

 

bloody hell.  Will this ever bloody end?