40 somethings in similar position?

Just a heads up to check turmeric with your oncologist as some research suggests it makes tamoxifen less effective. I think a bit in food is ok but supplements are more of an issue. Just what I was told anyway x

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Hi Blue80. Great news that your margins and sln was clear. Can I ask what stage/grade they said you were at?

Thanks @blue80 will bear that in mind, I will probably ask at my appointment. Also great news about your clear margins and lymph nodes x

Thank you. Yes I was very lucky. The Grade was 1, with a bigger lump of precancerous DCIS alongside it. I haven’t been told the staging. X

Hi ladies ,

Blue80, seems like I have similar plan to you, lumpectomy and node removal planned for 2 weeks time, followed by radiotherapy in feb for 3 weeks and tamoxifen. (I have IDC & ILC er+ pr+ her-) was told its 15mm and grade 1-2.

How are you getting on with it all? Good you had clear margins. I know you had been saying you wanted to push for mastectomy, are you happy enough now with things as they are?
When do you start your radiotherapy ?

Clare x

That does sound v similar to me. Mine was 15mm when removed with up to 43mm DCIS. The DCIS was removed in surgery and wasn’t spotted earlier so that was a bit alarming but doctor confident all gone and says unusual to get a cancer without some DCIS.

The mastectomy is a dead end for me. I have spoken to two other surgeons who have told me it would be unethical to give me one! I can’t say I am totally relaxed about it all but definitely much calmer than I was. They have been incredibly reassuring that my risk of recurrence is low and that with the tamoxifen and radio my risk should be lower than the average person! I have gone about some private genetic testing as well (if that shows anything I will be after the mastectomy!) but been told only 10% chance of positive result. With the close monitoring I am feeling a bit more reassured. I have heard from a few others now who have had similar and have been fine years down the line…trying to have faith in that.

As for the op, it honestly was fine. Yes you are a bit sore but it is manageable with regular painkillers. The first week was quite restrictive but since then better. My healing has been a bit delayed by a haematoma but honestly in the grand scheme of things it is fine xxxx

Radiotherapy not sure exact dates yet but probably end of Jan. They want to make sure I am fully healed before I start x

It sounds reassuring re - no need for mastectomy. Glad you have healed well. I think they said around feb for me for radio too but I guess it all depends on how the surgery goes and like that, if they find anything else in there.

I havent asked about genetic testing but I think we get that here without having to go private (in Ireland) maybe I’m wrong. You are right to get it though.

Well, it seems we are travelling a similar path so no doubt we’ll have much to discuss. I havent even looked too much into the tamoxifen and what the side effects are. Think ill just get through surgery first and deal with that down the line.

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That sounds perfect on one thing at a time. It’s too overwhelming otherwise isn’t it. I have been on Tamoxifen just over a week now. Nothing noticeable yet but still early days I suppose. X

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Hi , I don’t know if anyone is still active in this group.
I was 42 last month and have just been diagnosed. It was a total state of shock because I had an a Mammogram and MRI just three months ago because I was having what turned out to be a benign condition investigated and those tests were normal.
It is really good to be able to speak to people who are a similar age.

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Hi there. Totally relate to the shock. This is not on the ‘bucket list’ for your early 40s is it?! I hope you are managing ok and have been given some good support. Do you have any information on next steps for you? I felt much better when I knew ‘the plan’. I am post op and just waiting to heal up a bit more before I start radiotherapy. Started tamoxifen 3 weeks ago. Take care x

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No they found one tumour 0.8 mm on an ultra sound and it came back as er+ pr+ and her2 neg. They said it was grade 2. Unfortunately I went on Monday for them to put a clip in it and they found another tumour that was 0.4mm which has been biopsied. I have an MRI tomorrow and then an appointment with the consultant on Friday. But I keep on looking things up on line and scaring myself about treatment and recurence. I just can’t quite believe this is my new reality.x

Can I ask how old are you? How are you finding tamoxifen?

I am 43. I totally get the going down internet rabbit holes. It is easily done but I am doing my best to only look stuff up on forums like this. I also found once I got to speak to the oncologist that I calmed down a bit. They really help keep things in perspective. It is very scary but your tumours are small so this is early and they will be able to get rid of this and put you on the best footing for a healthy future :smiling_face_with_three_hearts:

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As for tamoxifen, I am 3.5 weeks in so hard to say yet. Not noticed anything obvious yet but maybe a bit more dozy than usual :upside_down_face: I am prepared with some YES lubricant which someone recommended for issues downstairs! Also trying to drink lots of water. I haven’t had any alcohol since I had my biopsy as totally freaked and have heard that can make side effects worse…but I will be allowing myself a glass of wine on Christmas Day :christmas_tree: :grin: Really hope you get some more answers very soon. Xxx

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Hi I was just wondering how you are getting on. I should be having a lumpectomy on Thursday and then I guess a treatment plan will follow.
I am wondering how they decide whether chemotherapy would be necessary. It would be great to hear other people’s experiences bof how this decision is made.
I have also read that age and when you last had a baby comes into decision making about treatment. I don’t know the extent to which this is true

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Good luck for Thursday. A really positive step to get rid of the nastiness! I honestly don’t know the full thinking but think partly the NHS Predict tool. I think the grade, the receptor status, lymph node involvement are all factors. I hadn’t heard about age at last pregnancy. I was just over 37 when youngest was born. They didn’t go into much detail and I didn’t ask to be honest. They were quite blunt that it wouldn’t be of any benefit to me so wouldn’t put me through it. A relief not to have it but at the same time there is part of me that wanted them to throw everything and the kitchen sink at it! Hey ho. I am doing ok myself although slight flap yesterday as have a complex ovarian cyst that is being monitored. Docs been fairly reassuring they don’t think anything nasty but really not in the headspace for that right now! I refuse to worry about it today after wasting yesterday in a google hole! Xxx

Morning everyone
@blue80

I know how you feel,

As well as waiting for surgery I had a scan on my ovaries the other week and still waiting for my results.
I have a cyst that they have been watching but I’m now stressing what they are going to do with it.
I’m in two minds just to tell them to take that ovary out and be done watching it.
Xx

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Thanks for replying. I very nearly put a post about this on here yesterday but needed to try and divert myself! Mine is 4cm and has been there since May/June at least. I am not sure how big it was then but think it is slightly bigger. Also it is ‘septated’ apparently which makes it not just a ‘simple’ cyst, but it is just a single thin septation which apparently isn’t necessarily something bad. Sonographer said the more complex, the more concerned they are but mine wasn’t massive so not to worry :upside_down_face: It doesn’t have blood supply to it as well which is also apparently a positive sign. Have you been given much info on yours? I am seeing GP on Friday to follow up. Pushing for CA125 blood test as well. Like you though I am so done with this! I have had cysts off and on for years and have had a bigger one than this before so under normal circumstances I wouldn’t panic…but… :grimacing:

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Hiya @blue80

My Cyst is roughly 5cm and tri-ocular ? simple cyst.
No pain, but I had a Mirena coil because my periods were really bad.
When they did an MRI they found a fibroid and my lining was thick.
I had CA-125 blood test and it was all ok.
I then went onto HRT for 2 months.

Today I phoned my gynaecologist and spoke to secretary and she read out my results.
Cyst is the same size, not suspicious, but because of my current diagnosis they will see me if I need to discuss it further.

I’m going to be on tamoxifen at some point and feel I need to find out what effect this will have on my periods and my cyst.

Do you know if you will be on a hormone drug ?
Xxx