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Newby

14 REPLIES 14

Re: Newby

Hi Sue

 

i was initially told no chemo even with my 13mm Grade 3 highly positive ER/PR Her neg bc but after lumpectomy and Sentinel Node Biopsy where one lymph node was positive they decided to put me down as needing chemo.  I was then told I was unable to have the Oncotype test free on NHS due to cancer in lymph node.  I have a clotting condition which may complicate chemotherapy (I was initially told they can't give me a treatment which could kill me (chemotherapy) but at the next appt was told I do need chemotherapy).  My consultant suggested I could paying privately for the Oncotype test which I have since found costs £2500 available at Royal Marsden or the Prosigna Test £2400 again at the Royal Marsden.  I have also been offered the Optima trial.  I am frightened of agreeing to chemo without the extra information from the prognostic tests due to my increased risk of blood clots from my Factor V Leiden mutation having read this is a problem encountered during chemotherapy anyway.  

Jill1998
Community Champion

Re: Newby

Don't blame you !!Very difficult for those in the "grey area" where it may or may not beneficial .Hard decisions .
Sue C
Community Champion

Re: Newby

Oh OK Jill, thanks. Now you come to mention it, I think my age was a factor ( 49 at the time). Also it turned out to be a quite a large lump, 45mm. No lymph node involvement though as I caught it fairly early. To be honest, I was OK with having chemo. Wanted to throw everything at it! Sue xx

Re: Newby

My op not til 8th August but had mammogram scan and core biopsy already so know it is 35mm grade 2 lump there does not seem to be any hard and fast rules with diagnosis etc x hormone positive so have op then rads then tablets but don't know which ones yet but was told would know more after lumpectomy. I have pre op on 24tj July so hope to sort of know more then xxx welcome and big hugs to you xx
Jill1998
Community Champion

Re: Newby

I think it can dependent on a number of factors , including the size of the lump, your age and if any lymphnodes involved .They look at your percentage gain from chemo taking all the factors into consideration .I know a couple of ladies with grade 3 who didn't have chemo -think they were given the choice as they were in the "grey area" where it may only have a small percentage gain for them.
Sue C
Community Champion

Re: Newby

Hi Patchwork Girl

Can I ask if you're having chemo?

Mine was grade 3, so as I understood it, that's why ihad chemo. But maybe it depends on size of lump?

Sue x

Re: Newby

Hello Patchwork Girl...

 

gosh that must have been very scary finding a lump.  I was in shock just from the recall and in denial too, expecting it to be a false positive result or something benign.  

 

I will think of you on 25 July and hope it goes well for you.  

 

x

Re: Newby

Hello Ann That does sound similar.  Surgeon said mine is 9mm x 7mm.  It is very reassuring to hear your story and very happy to hear things are so much better for you now.

Re: Newby

Hello Helena

 

Thank you for your lovely reply.   They said something about being Oestrogen positive (?) I am sure!  They did say I would go on some tablets but didn't say what or when but that I would probably be on them for about 10 years so I guess that is similar to yourself.  I will ask about this when I go back to see the nurse next time.  

 

Thanks for the welcome hug.  

 

Re: Newby

Hi LadyMondegreen, our stories are similar except I found a lump, was initially told it looked benign then on the biopsy it was found to be a grade 3, my surgery Is  booked for 25 July, followed by radiotherapy.  I agree the diagnosis just sweeps the carpet right from under your feet, very scary.  At my biopsy results  appointment I was told I could get copies of all reports sent to my dr etc if I wanted them, they were my property, I declined then but am now thinking I will need to see them once my lumpectomy is out of the way.  All the best. 

Re: Newby

Hello LadyM,

Welcome to the club anyway & yes, as you have been told, this is totally treatable & outcomes are excellent. It is always such a shock to get diagnosed though. 

As Sue says, you normally get copies of all correspondence to the GP which details diagnosis & treatment. The path reports can be requested, but I didn't bother as I was happy with the info I had. 

Your diagnosis sounds similar to mine, picked up by screening, 7mm grade 2 invasive ductal & er+ (oestrogen positive), was treated last year & was back to normal after a few months. 

I now feel very grateful I went for that mammo as I nearly didn't. 

Do come & chat whenever you need to. 

ann x

Re: Newby

Ladymondegreen

 

Hello and welcome to this lovely forum where you will get loads of help and support.

 

I was also told mine was very small, caught early and treatable, thank god for routine mammograms :).  I had surgery in Oct last year, 5 weeks of rads which I completed in Jan of this year. and am on Tamoxifen for 5 years.  Life has gone back to normal, although it is a new "normal" because of what I have been through, but I am doing everything I did before the diagnosis again, and especially my bowling which is very important to me.

 

I had my report when I went for my results after surgery as they need to send the lump and lymph nodes off to be tested to check that they got clear margins with no lymph node involvement which is the only way that they can tell that.

 

Have they told you if you are hormone receptor positive or progesterone?

 

We are all here for you whenever you need us and ask away on anything you might want more information on as there will no doubt be a lady/ladies on here who will be able to answer it.

 

Sending you a hug

 

 

Helena xxx

 

 

Re: Newby


@Sue C wrote:

Hi and welcome to our group. Sorry that you have found yourself here, but you will get lots of support from all the lovely ladies on here.

You will get a report after surgery. Its not until they remove it, that they know exactly what size, grade, type etc it is.

Best wishes and hope the surgery goes well. 

When the time comes, join the threads on Going through Treatment and you will be able to chat to ladies going through the same as you 

Sue xx


Oh that makes sense.  Thank you so much for replying and your kind message - LM xx

Sue C
Community Champion

Re: Newby

Hi and welcome to our group. Sorry that you have found yourself here, but you will get lots of support from all the lovely ladies on here.

You will get a report after surgery. Its not until they remove it, that they know exactly what size, grade, type etc it is.

Best wishes and hope the surgery goes well. 

When the time comes, join the threads on Going through Treatment and you will be able to chat to ladies going through the same as you 

Sue xx

Newby

I just posted to say hello as another reluctant member of this group but now confused as my original post disappeared.  I am newly diagnosed and reeling. I was called back after a routine mammogram, had a biopsy / ultrasound and told straight away that it was cancer.  Had the follow up to get results yesterday which confirmed a Grade 2, invasive cancer which is very small and told it is treatable.  Now booked in for surgery on 3rd August, lumpectomy followed after a month with radiotherapy.  My question is, does anyone know, should I have received a pathology report or does that come later? I noticed a few people mention them on these boards. Thanks for listening and hugs to everyone in this boat.