her2 results timescale

[Kip]

Yes, fingers crossed we can get moving on this thing and get rid!

[Jill1998]

Oh no Kip - that's hard .Try and keep busy - hopefully results will come sooner rather than later and you will know what your treatment will be .

[Kip]

Well surgery delayed until 16 may, had more biopsies to hopefully get a Her2 results this time!!!  Not imoressim

[Lovewine]

Kip , how unbelievably stressful for you , I had to wait an extra week for my her 2 results and we were on our way to the hospital when Breast care nurse told us not to come as the results hadn’t come back and that was bad enough.
Do hope you get answers this afternoon.

[Jobey68]

Kip that is so unfair on you, how on earth do they expect you to make such an important decision when they can't even give you all the information you need!! I fortunately didn't experience any delays and seriously think I would have swung for someone if I had.

I know they explain these things can happen but they really shouldn't , every day waiting for results is a day too many and to add on more for you just isn't fair, I hope you get some answers this afternoon and are able to make the decisions they are asking of you Xx Jo 

[Jill1998]

That's ridiculous -surely they must have know that ages ago !!!

[Kip]

Don't believe this, just had call from my surgeon to say that the HER2 test has come back as "insufficient tissue" (I had the biopsy on 3 April and they only now decide that!!!).  Which means I have to decide whether to have surgery tomorrow without a result or have more biopsies today and wait another 2 weeks.  Don't know what to do, am going to Breast Clinic this afternoon to ask some more questions but head all over the place now.

[Kip]

I have to ring at 2pm to find out if they are back, if they are not I can go in at 3pm to see the consultant/surgeon to discuss the options as I am due to have the radioactive injection for the SNB tomorrow at 4pm.  I am thinking I will delay the surgery if the results are not back in as want the option of the best treatment should HER2 be positive.   Its all the unknown waiting that stresses me, I keep worrying it will be growing and spreading as I was diagnosed on 3 April

[Jill1998]

What time is your appointment ?

[Jill1998]

Hi Kip - the new drugs to treat HER2 positive cancer have made survival rates really good - maybe in the past things were different but there is no reason not to be positive.

[Kip]

Well today I should find out if those dreaded HER2 results have turned up, if they have and are negative I can have my surgery tomorrow, if not I will have to postpone it in case they are positive and I need chemo beforehand... I don't know what to think anymore.  Just read up on HER2 Positive and am now really scared this is a bad thing?   Should I be worried?  I am also ER+   Have been very positive over the weekend but it hit me this morning when saying goodbye to the children that I may not see them grow up.. feeling very very down.

[Jill1998]

Yet it's very hard to switch off - the middle of the night is the worst - the first few weeks are a whirlwind and exhausting - it does get easier though .

[Kip]

Might do that, so exhausted by all the last few weeks have brought, wish I could switch mt mind off for a while

[Jill1998]

Not helpful when you are being asked to make such an important decision !!! Why don't you try the BCC helpline in the morning and see if they can shed any light on the decisions you are being asked to make ?

[Kip]

Thanks Jill I will have a list as long as your arm!  Husband coming too as he retains more info than me at present.  Interestingly my consultant told me that the place in Nottingham where my Her2 test is currently sitting often wait until they have a batch before testing them... Great hey

[Lovewine]

Yes I totally agree , you need more information before deciding , the helpline are very good as are the Breast care nurses .

[Jill1998]

Write all your questions down and don't leave til you are sure you understand the choices you have and why .Have you got someone to take with you who can listen to what is said too ? You can also ring the helpline at BCC and talk to one of the nurses - they will have the medical
knowledge to help you understand the implications .The number is 0808 800 6000.
opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

[Kip]

Yes that's the name, my consultant said I couldn't have it after surgery?  I am going to see her on Monday and will ask questions then.   Thanks for the advice, am fed up of the waiting but it seems we all go through it.

[Jill1998]

Perjeta? It is given with Herceptin sometimes - I'm still not sure why you can't have surgery first whatever the HER2 result and have these treatments after .I really don't think you have enough information to make an informed decision- you need to speak to the Breast unit on Monday and ask to talk all this through carefully with someone and preferably have someone else with you to listen to what is said and ask questions too .xx

[Kip]

Sorry, I think I typed in complete panic, I meant I can't have one of the drugs (something beginning with P but can't remember what) after surgery as it's given in chemo... Does that make sense?

[Lovewine]

Hi Kip, poor you having such a decision without the results back . I had Her2+ and was also borderline but results took 2 weeks, I had chemo before surgery and as far as I am aware if you are to have Herceptin it is only licensed by NICE if chemo is given too ( Herceptin is what you have usually for a year if Her +) it was all doable and chemo shrank the tumour away to almost nothing .
Like Jill asked - why can’t you have chemo after surgery ? I hope you can get some answers , wishing you all the best , let us know what you decide !

[Jill1998]

Sorry I meant why you can't have chemo if you have surgery first ?

[Jill1998]

Hi Kip - what a difficult decision did they explain why you can't have Herception if you have surgery first ? You could also ask about this in the Ask the Nurses section .

[Kip]

Hi,  I was diagnosed with Grade 1 Ductal tumour 22mm and some small spots in same breast, ER+ but my HER2 results are still not back (almost 4 weeks).  I am due to have a MX on Tuesday (4 days time) and have just had a call from my surgeon asking me to decided whether I go ahead with the surgery or wait for the results to come back.  If these are Positive for HER2 then I may need chemo and cannot have this if I have surgery first. She said I am borderline which is why it takes so long.  Anyone else have this problem?  Can it still come back negative?  Help in terrible panic

[Janet55]

Hi Pauline,

thanks for your reply. Surgery went well. Clear margins and no nodes affected ( only 2 taken) so no more operations. Scar is lumpy but they tell me it will settle down with time.  Waiting for appointment with oncology for chemo. I am apprehensive about this but im sure I’ll hear soon. Was told 2-4 weeks.  Another waiting game but at least the lump is gone. Hope you are ok and The cording is improving. 

Janet

[Cancerbeater53]

Hi Janet55

How did you get in with surgery after lymph node removal?

I'm still struggling with mine due to awful cording.

Pauline x

[Janet55]

Hi Pecan, 

i was called into clinic and told that I am Her2 Neg (triple neg)  so have now had surgery. The wait for results now is 2 weeks. They have also found a tiny nodule on my lung but not sure if it is connected but have to think it could possibly be as I have Cancer. I am not unduly worried about this as they have assured me that treatment will deal with it if it is. I’m doing ok following op just lymph surgery site very bruised and sore. 

Janet 

[pecan]

Hi Janet.  The waiting for everything is the pretty awful, and messes with the brain somewhat.  This is the place to come for support.

I notice from another post you did that you say you are Triple Negative.  This means that the Her2 is negative, so it may well be that you are worrying for nothing in that regard.  I suggest you contact your breast care nurse to confirm this, as it will remove one small part of your anxiety. 

I wish you well.

Cathy

[Jill1998]

Hi Jane - the first few weeks after diagnosis are really hard - waiting for all pieces of the jigsaw and treatment plan.Have you any idea when you will get your results ? What do you know so far ? Jillxx

[Janet55]

I am currently waiting on a Her2 status. I know my cancer is metaplastic and is fast growing. I have surgery booked for next week 14th February but have been told that if Her2 status is positive then I will be referred to oncology for Chemotherapy and herceptin first. I am anxious because it isfast growing and worried about the time scale and what will happen. It’s already 3 weeks since biopsy and still no results. 

[blueash]

Don't worry about the chemo - the fear of it it far worse than getting it. If you can manage it not eating the day of and the day before chemo will really help you with side effects. Do a search on Valter Longo, I did what he said and while I had a couple of issues I did not have any tummy troubles, no cold sore or mouth ulcers and I generally had a much easier time that people that were eating.

Plus I used a cold cap and kept lots of hair.

If your heart Echo goes lower then be sure to take pycnogenol and COQ10 supplements.

You will be fine - ask if you want to know anything xxx

[fairy]

well its her2 positive so chemo 1st

[Jill1998]

You will better once you know what the plan is and what happens next .

[fairy]

i am.hoping to get results asap to get things moving, im scared of waiting, scared of everything

[blueash]

With me, because my cancer was small  they did surgery first, then chemo, then rads.

I think you get chemo first if your cancer is larger and they can shrink it (then give you less drastic surgery). That is what they said to me anyway. 

[Jill1998]

Ok Fairy , I didn't realise that would affect the order in which they did things if you needed chemo anyway .Horrible to be in limbo isn't it ,you can't really make any plans/ preparations as you don't know what will happen when.

[fairy]

yes i will need chemo regardless as im only 31 but been told chemo first is only best if im her2 positive.. been booked in for surgery 16th aug.. hopefully all results be back by then xx

[blueash]

Mine took a couple of weeks - I think because they test it twice if it is suspicious. They do that because if you do have HER2 you have to have chemo and Herceptin.

I had surgery first and have 2 more Herceptin jabs to go - you get 18 but some people have difficult side effects such as a weakened heart and then they stop you.

[Jill1998]

I didn't get my results til after surgery .Personally given the choice I would want the tumour out asap ,but its a difficult choice.Why is the HER 2 status affecting your decision?Have you been told you will need chemo whatever the HER2 status ?

[Lovewine]

Also it was about 10 days after biopsy when i received the Her2 result!

[Lovewine]

Hi there, i had chemo before surgery and my cancer was fast growing and Her2+, I didn't have a choice as my consultant just told me thats what was happening whiich i was happy with, i started chemo - Fec-T 3 weeks after lymph node biopsy, the lump shrank after one dose and continued to do so, my surgeon recommended this way as it shrinks the tumour enabling a lumpectomy, most importantly though it treats the whole body systemically . Hope your treatment goes well, all the very best!

[pecan]

That's not a decision any one of us can make for you.  My suggestion is to phone your BCN every day to see if they have the results, and weigh up the pros and cons of doing surgery or chemo first. 

As I see it, chemo before the surgery will shrink the tumour and help prevent cancer growing elsewhere in the meantime, leaving less to be removed.  Have you been given a date for surgery?  It may well be that the surgery date comes before the chemo anyway, as it's been two weeks.  What has your Dr recommended?  He really has more knowledge than any of us

[fairy]

thank u all it seems to be different everywhere. im scared to leave it much longer as it is fast growin but dont want to make the wrong decision? should i have surgery or chemo first? x i had the biopsy 24 july so it has been 2 weeks monday

[fairy]

thank u all it seems to be different everywhere. im scared to leave it much longer as it is fast growin but dont want to make the wrong decision? should i have surgery or chemo first? x

[Patriciamay]

Hi Fairy

i agree that sounds sensible to me in helping you make your decision.  HER2 in my hospital took 3 weeks.  In addition  I understand it can take longer if it is "borderline".  Xxx

[pecan]

My ER took a week, HER2 took longer, but not sure how much longer.

[chasanddave]

Hi - I get my final HER2 results tomorrow which will be a week

Jacqui

[fairy]

does anyone know how long these take to come back as im unsure whether i should have a lumpectomy or chemo 1st depending on status of this. i have been offered both options but i feel i need to know all the facts to decide. dx grade 3 idc on tues 37mm so fast growing