I’ve been back to work the last few days and omg I’ve been tired
It’s kept my mind busy as my results aren’t till Thursday.
It’s the waiting for results that is hard as I have no control and for work I can’t plan anything.
Will I be able to work during treatment….
I had an assessment with McMillan for some Bupa counselling. This will hopefully help me with my mindset during treatment.
My arm pain is so much better, I’ve been careful at work and am not doing anything to strenuous. (Difficult when working with children)
Planning on going for a nice walk this weekend.
Take care everyone
Leigh
Xxx
@eb13, is this the treatment team (surgeon & BCN) you are being seen via private insurance, that have advised that an Onco DX test isn’t necessary?
It would be true that your insurer wouldn’t cover a test, if your treatment team aren’t recommending it as ultimately the treatment/tests an insurer covers is based on what a consultant requests as well as your policy cover.
This is just my opinion, if an ODX test isn’t recommended by your current treatment team (via private insurance), then it would be unlikely that the NHS would recommend it as ultimately they will both be looking at your cancer profile/pathology (i.e. the same data + NHS trust NICE guidance eligibility criteria).
I don’t recall if you mentioned your actual cancer profile details, but if I were in your position I would ask your oncologist to explain how they came to the decision that an ODX wouldn’t be useful for that profile (& ask them to show you and explain your PREDICT tool outcomes) for your peace of mind. The request for my ODX test was initiated by my oncologist, so expect that would be the best person to raise your questions with.
I’m wondering whether the MDT made the decision using the PREDICT output + Additional clinical data. The PREDICT online tool is available for anyone to access if you wanted to plug in your cancer profile details and see the scores beforehand as well. But I’d say only do this if you are comfortable seeing the results on your own (I did this as I’m quite analytically minded & could look at the data in a detached manner to understand at the time, but know that not everyone would necessarily feel the same/be able to do that).
Hi @eb13,
I’ve just caught up on the thread and I’ve seen your message about the Oncotype test. My oncologist in the South of England offered me the Prosigna genomic test which I agreed to do. I hadn’t known about either test at the time of our appointment 5 months ago when I was offered the test as I hadn’t yet joined this forum. Several appointments down the line after reading about scoring from the Ocotype test online I asked about my exact test score and was freaked out when she told me over 80 (can’t remember exactly what) and I had forgotten that the test i had was called Prosigna. The way the scoring works is completely different - I believe the Prosigna test gives you a score out of 100. We then realised that I was thinking of a different test and my oncologist told me they don’t offer the Oncotype test at that hospital.
Anyhow according to some info I found online from the Royal Marsden website dating back to 2020: ‘The Prosigna test offers greater accuracy than the Oncotype DX test as it gives fewer intermediate results.’ I have no idea about these sorts of claims, but if you did feel you wanted to do a test privately, I saw that this one is apparently priced at £1400.
Good luck with your treatment plan, whatever you decide. Just give yourself enough time to decide what’s best for you. I hope you are lucky with very few side effects like some of the other women who have posted on this thread. x
I’ve had three of the six free sessions with Bupa via Macmillan, and they’ve been so useful. I would definitely recommend this to everyone.
Well done for even getting to work. I work with children too, but I’m self employed, and I definitely don’t have the bandwidth at the moment. You must be knackered!
Thanks so much for replying. I am going to bring everything up with the oncologist when I meet them.
The profile is that I had a 12mm tumor ,grade 2 and have been told it’s strongly er+ and pr+ and it is her negative. There was also a small area of pre cancer that was removed. The SNB was clear. As far as I can tell I would be offered Oncotype under NHS .
Do make a note of all the questions you have as well as supporting information/facts you have and take them with you, as its very easy to forget to ask/mention something, given there is such a lot happening for you. It will help to hear the their rationale for the MDT decisions and if in fact ODX is their genomic profiling test of choice.
As mir-ie has mentioned there are different tumour profiling tests (also referred to as “gene expression profiling tests” or “gene assays” by some consultants) used by the NHS in the UK; e.g. EndoPredict, Oncotype DX, Prosigna; there are variations based on the NHS trust you are under (they would all however be following the same NICE guidance), but this wouldn’t really apply to you at the moment as you are currently being treated privately. It’s just one to bear in mind if you are considering transferring care to the NHS for any reason. I looked at a comparison of all 3 when I was playing the waiting game with unclear & sometimes delayed communication after surgery 1 & 2.
My experience of consultations when under private care (insurance) vs. those under the NHS setting was that you do get more time during an appointment to raise questions and have a discussion with your consultant (unlike when under the NHS which has it’s time & resource constraints & a lot of communication happens via your CNS/BCN); so do take advantage of that.
Hope you get the information & clarity you need for peace of mind during your next appointment. xx
Thank you, I am about frustrated because I really want to have some further testing done it done but the MDT seem adamant it isn’t necessary. Now I am also concerned there will be delays to the next stage of treatment. I would probably be fine with there decision if it was grade one, really super tiny and maybe if I was older. But it’s grade two ,12 mm and 42 - all things that from what I have read suggest that I meet the criteria for further testing. Howve I don’t want to delay the next step in treatment too much- I am not sure what the window is for radiotherapy. I am hoping they can give me a bit more clarity next week but in the mean time I think I will contact my insurance company and find out on what circumstances they will cover the Oncotype or another similar test.
Hi there. I thought i would come and say hello. I was diagnosed yesterday as far as i know its grade 2 triple positive and approx 5mm in size. Ive got surgery booked in on the 23rd of Jan and the doctor has said chemo is likely but cant remember exactly why they said this…it was a bit of a blur if im honest. My husband and 15 year old daughter have been supportive but i am worried about my daughter and how this is going to affect her when i start getting treatment. Its been reassuring listening to all your experiences.
I can understand the frustration. One thing you could do is get a second opinion once you have had your oncology appointment and you aren’t happy with the outcome.
I did this twice during my treatment journey as the decisions weren’t straight-forward & sometimes with differing opinions; the first was for surgery (type) the second was for oncology (radiotherapy decision).
As you have private insurance the process should be relatively straight-forward, as the first step you would find an independent oncologist (i.e. not in the same MDT) recognised by your insurer who you can see within the timeframe you need. I did a lot of searching on my insurer consultant finder tool to find who I wanted to see, and then spoke to their secretary to find out their availability for a second opinion with an explanation of what I needed, and then they initiated the request for associated medical records such as imaging and clinical data.
Regarding the timeframe to start Chemotherapy (CT) after surgery, I had the same frustration when I couldn’t get answers about if/when my ODX test would be done, and raised this question. I was advised that Adjuvant CT can start anywhere up to 90 days from the last surgery (answer provided by two different NHS trusts contacts). Likewise the same was said for Radiotherapy. If both CT and RT are recommended after surgery, then it’s CT first, followed by RT.
Thank you so much. This is really good advice. My husband thinks there is a second opinion option with my insurance so I think I may do this if I don’t feel satisfied with why they are not doing Oncotype or similar. I am very nervous of chemo but I don’t want to rule it out without being absolutely clear about whether it would benefit me.
So sorry that you find yourself in this situation but you will find only friends here . I’m not surprised that everything is a bit of a blur , obviously you have been blind sided .
I would advise carrying a notebook and pencil around and writing questions down as they come to you . Take it to your appointments or have it with you for phone appointments so that you don’t forget to ask anything . Cross things out as they are answered and write down any new questions which arise.
I don’t have children but there are lots of people on here who do - you could raise a post about this and I’m sure that you would get answers . It might be worth letting your daughter’s school know what is going on just in case she has a wobble there for any reason.
Hi Eb. Personally I think an oncotype test is warranted considering your age and grade but I did want to chime in an assure you that a 12mm lump is indeed considered tiny. Another thing though to consider is if you had LVI. That’s when cancer cells from the tumor have invaded the surrounding lymph and vascular vessels. If you didn’t have that and your nodes were negative, you can be pretty confident that no chemo is the proper decision. The reason I would still want an oncotype personally is that I like 100% surety of a decision and that grade 2 would bother me. But the NHS has to watch costs where the US is a private insurance health care system so you’ve got to consider expenses in a way we don’t. And your chances of benefiting from chemo with a grade 2 lump that has not invaded the surrounding area nor any lymph nodes is very slim so if you had that and didn’t want to fight their decision I personally think it would be quite reasonable to just move on.
All ok. No surprises. They knew about mets in two lymph nodes, but there were a further two with micromets in (of the 19 lymph nodes that were removed). So now, waiting begins again for results of Oncotype DX test that I qualified for because of my ER+ PR+ HER2- cancer type.
Because I am 58, if there is a result =/<25, no chemo will be done, just radiotherapy. If the result is >25, then chemo and probably radiotherapy too.
I have to wait 5 to 6 weeks to see oncologist when I’ll be given the results, even though the results will be back in two weeks.
Treatment will start 2 to 3 weeks after that.
I’m happy with this, except the wait of course but at least I have no obvious cancer in me while waiting this time.
I know it will help mentally knowing the cancer is gone whilst you’re waiting.
Keep yourself busy, do you think you might go back to work ?
Did the surgeon say anything about your arm pain or how it was all healing?
I keep getting shooting boob pains and I’ve got issues with my bra seam rubbing near my armpit and it’s really ouchy!
I’m feeling a bit meh since my op friends and family have kind of abandoned me as they see I’m back at work and of course life goes on.
I’m struggling with the what ifs ?
What’s to come next
Perhaps this is what I can talk to the Macmillan counsellor about.
I’m suppose to get my coil removed tomorrow and I’m dreading this, I’m worried if I’m going to get my period come back full flow…just what I need!
It never rains but it pours. Hope it goes well today when the nurse goes on her fishing expedition.
The pain in my chest eases off when I move it, but if I sit still for too long, it lets me know about it. My ‘Someone like me’ recommended putting a silk scarf inside by bra and around the armpit, so I bought on cheap one in the sales and I will try that later when it inevitably starts to throb. Later in the day is always worse. My bra also digs in. Ouchy is the correct word! I have a lot of BioOil on that area too all the time. I can’t tolerate deodorant at present on that side, so it gets slightly pongy by the end of the day, but moisturising it is what it needs most. Have you tried that? I’m sure you have.
Yes, people think once you look alright, you are alright. Definitely bring this up with your counsellor. Mine gave me some good tips on how to manage other people’s upset at what’s happened to me, and stopped me feeling too responsible for their feelings, which was very helpful. I still feel guilty for putting my family and friends through this though.
Yes, I might have to do some work in the intervening period. I will need something to stop me dwelling on the results of the OncoDX. And I could do with earning some money! The joys of self-employment.
I used to put a bamboo sock in my bra - it seemed to help with itching and sunburn after radiotherapy. It was a nice soft gentle barrier just where I needed it so I think the scarf is a good idea. Bamboo is antibacterial naturally and I tried to put them in my armpits before my radiotherapy appointments when I wasn’t allowed to wear deo . Unsurprisingly they just kept falling out .
I read on another thread of some wipes that someone was using until they were able to have deodorant that had Chlorhexidine in them - I can’t remember what make though I’m afraid. If you could find some with Tea Tree oil they may work .Australian Bodycare so them but they’re expensive.
but at least I have no obvious cancer in me while waiting this time.
since my op friends and family have kind of abandoned me as they see I’m back at work and of course life goes on.
.
Nothing in lymph nodes