"Borderline for Chemo " Has any one had this test ?

[poemsgalore]

Glad to have helped mirey. I printed mine out and look at it from time to time - tee hee!!

[mrey300]

Seems it is a mysterious PAM50 test. We read about it in all media and internet sources BUT it is not available/offered in the UK no matter privately or not. Yet?

Perhaps I am missing something. 

[mrey300]

Thank you Poemsgalore,

 Really nice prediction tool.

[stressy_messy]

Hi I don't know if the test is available privately but there is the OncotypeDX test that can be done privately but costs about £2,000 and the samples have to be sent to the USA and it classes a large number of women in the "intermediate risk" category which still makes it hard for Oncologist to decide if chemo could benefit or not. The PAM50 test shows those at high risk or low risk of their cancer recurring making it  easier to know who would benefit from chemo. 

The online tests are ok but some are out of date and don't account for newer treatments and shows those that are still "alive" after 5/10 years so that could be living with mets or NED

xx

 I didn't realise this was an older thread, I thought you had started it mrey300 lol, I didn't see the other posts above about the OncotypeDX test derrr, sorry if I've repeated what was already on here lol.

[poemsgalore]

There is a free online test that you can do yourself to get an idea of what benefits chemo might give you. It's called predict and can be found here:

http://www.predict.nhs.uk/predict.shtml

all the best

poemsgalore xx

[mrey300]

Is this test PAM50 avilable elsewhere in the UK either privately?

[stressy_messy]

Hi the PAM50 test is not available on the NHS at the moment. i have read that it might be in the next year or so but apparently it's expensive. Sadly it's always about the money. xx

[mrey300]

Hi all,

I'd like to ask to HAS anyone done PAM50 test and saw the result report either privately or on NHS?

It seems all these tests, if to beleive media, exist only within the labs grounds and won't be available for us for along time. I've got a reply from Marsden: "we don't do PAM50", as of October, 2013. 

Would appreciate any feedback please.

[Bowl_of_cherri]

Thank you mrsblue I am so impressed with your feedback! It maybe OPTIMA, but I think this must be the PAM50, especially with its links to the Royal Marsden Hospital . This is a really good test if you dont need Chemo, but if you do ? I wished I had been fully informed and been given a health warning ! Being a natural born worrier , do I really want to know that my BC is more than likely to return in the next 10 years? Or if its an OPTIMA test do I really want a predictive prognosis? Had a look on the NHS website at OPTIMA test and felt like saying " Those of a nervous desposition , look away now " . I didn't have the courage to go further with the site's questionnaire.! I am going to ask my BCN on Monday if it's the PAM50 test and ask if I can make up my own mind as to whether or not I want the results? Thank you once again mrsblue for all your research, I know I am beginning to sound like a sullen teenager Kathy xx

[mrsblue]

Just found this when looking for something else...
http://www.royalmarsden.nhs.uk/news-events/news/pages/20130702.aspx
This seems to be the test that the Marsden is now using.
PAM50
Different from the Oncotype DX test but possibly thought to be better in some way.

[mrsblue]

Hi Kathy
As others have mentioned, it's best to check with your medical team, but I hope it may be helpful to you and to others if I give some info that may be relevant.
There is a test called OPTIMA which is now in use in some NHS hospitals in the UK. It is a clinical trial now in the pilot phase, and it uses the Oncotype DX test.
Rather than explaining more about it here, this link
http://www.cancerresearchuk.org/cancer-help/trials/a-trial-looking-predict-when-chemotherapy-needed-...
gives a good explanation. (I know about OPTIMA because I attended a focus group about it earlier this year - unfortunately I am not eligible because I have mets.)

[Guest user]

By the way Kathy you should be given a print out of your treatment plan or you can ask for it. I also asked for a print out of the Path report which the doc gave me without any problem. It made me feel stronger to have the info and was a basis to ask the oncol more questions.

xx

[Bowl_of_cherri]

Just read your link Zuzy and the test has not been sent to Califonia but to the Royal Marsden London. I am a NHS patient. Now your link states it maybe trialed in the UK, but no mention was made of me taking part in a trial so I am not sure. I will let you know how things go. Kathy xx

[Bowl_of_cherri]

Wow thank you Zusy, Melrose 15, Spookymoo and Orangepeko for your responses. I am amazed at how informed you all are. Give me a few months and I think I will be doing exams in this stuff ! Well I am not sure what that test is called but I live in NW England and they have sent my test to the Royal Marsden Hospital London . I am an NHS patient and there was no mention of Oncotype dx test. Melrose I have not posted on an earlier thread so you must have replied to someone with a similar query. Spookymoo and Orangepeko I need to ask my breast nurse a few more questions, I know I am Oestrogen positive but not to what extent. As for HER2, that has never been mentioned. Essentially because it was an aggressive tumour (grade 3) I was told after the core biopsy that chemo was on the cards, irrespective of tumour size. However, after WLE a , with a 1.8 cm tumour and no node involvement, the hospital team must have sat and discussed my results and must have deemed me borderline for chemo. From what I was told a third of people with similar results to me, have little to gain from chemo. Therefore, most people similar to me (66%) will actually benefit from Chemo! I need to ask my BC nurse for the name of the test. I went up the hospital today for a pre-op for re-excision to get a wider margin (all the tumour is out ) and there was no mention of any results. I will let you know how I get on . Thanks again Kathy xx

[Guest user]

Hi Bowl of Cherries

My diagnosis was similar to yours (IDC grade 3 no lymph nodes involved). As I was having a mastectomy (due to 2 small tumours and DCIS taking up too much of the breast ) I did not have radiotherapy. I wonder if the test they are doing is for HER2? It could be that they have tested for it at your hospital and that you are borderline for HER2 positive, and they need another path lab to do another test (FISH test – nothing to do with “fishes”, My tumour was HER2 strongly positive so I had Herceptin infusions. HER2 postive can be aggressive.

I was offered the choice of chemo or not so I guess that I was “borderline” in the sense that my tumours were small – 1cm x 2, and no nodes invoved, but that it was grade 3 and HER 2 positive as well as ER positive.

I chose the chemo as the doc suggested the belt and braces approach was a little more reassuring. Not everyone would make that choice its very personal to each of us, what we can face and what we can live with without undue anxiet.

All the best with your treatment and decisions. I am now 15 months post chemo and 3 months post Herceptin and all going well and I wish the same for you.

The best advice I have seen is don't google – just use the Macmillan site and Breast Cancer Care or similar specialist sites as google seems to bring up too many unusual and scary cases.

xxOrangepeko

[spookymoo]

Hi Just wanted to add my experience to this thread if I may. I was diagnosed with IDC Grade 3, stage 2B last year and had primary chemotherapy to shrink the tumour prior to surgery. I am very hormone receptor positive (ER 7/8, PR 4/8) and was 43 at Diagnosis last July. I was not offered the chance of the Oncotype DX test on the NHS and as I also had some positive nodes which showed up on an FNA, I guess I had no option but to have chemo.
I had a tumour marker inserted prior to commencing chemo to measure the "shrinkage" of which there was very little - approx 1mm over 6 cycles! I have subsequently found out this can sometimes happen with Hormone Positive cancer (ie it sometimes does not respond to chemo as well as other types of breast cancer). I may be wrong, but I have also read somewhere on one of these threads, that chemo is of no benefit for DCIS either - this is sorted out with surgery?
With hindsight I wish I had been offered the Oncotype DX test, as going through chemo and losing your hair and all the other side-effects (I still have some 7 months on) are worth it if you know that the tumour is going to respond. It was a disaapointment to say the least when I found out differently. However, I had positive nodes so I guess I would have had to have chemo either way anyway.
However, although it didn't shrink, I like to hope that at least it may have stopped it growing further or spreading further from the lymph nodes. I have only just finished all my treatment after one year so technically I am not in remission yet and still living a "wait-and-see", "hope-and-pray" existence. I think if you have the opportunity to have the test, take it and see what you get back. You will then have much more information with which to make an informed decision. As they say, knowledge is power!

[Melrose15]

Hi Kathy. I think I may have replied to you on an earlier thread?! I had the test although I had node involvement they were expanding the trial base. My results were delayed a few days and when they did come back they were inconclusive. Therefore my onc didn't want to delay things further so I started chemo anyway. I will now never know if i needed it or not! I know a couple of ladies who have come back not needing chemo. There is nothing to lose by having this test so wait and see the results and hopefully you can avoid chemo altogether.
Good luck
Emma

[Zuzy]

Hi Kath, is it the oncotype dx test? If so it is common in the US but not really used much here as i believe it's not nhs funded, it's something that can help to determine benefit of chemo in early stage hormone positive cancers with no nodes, there's info on ths site at http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/oncotype-dx
Good luck xx

[Bowl_of_cherri]

I was diagnosed with IDC, (plus dcis) with a 1.8 cm tumour, grade 3. Fortunately no node involvement . Initially I was told I would have chemo ,radiotherapy, anti hormone therapy. However they now say they have sent off for a test to a the Royal Marsden hospital to see if chemo would be of benefit to me. I live in the NW so am awaiting the results. I would like to hear from anyome else who has had this test .

Kathy