Help..Confused

[menopausalmum]

Hi.

I had a mammogram in mid December as I’d finally decided that the lump in my left breast was actually there and I should stop ignoring it… two biopsies were done and I returned the next week for a third. As there were three areas of concern, two that looked like cancer and third which showed calcifications.

Results on 10th Jan told one area was invasive breast cancer one area DCIS and one area of pre cancerous cells or something like that. And that as they were spaced out and as my breasts are small the ratio of dodgy tissue to good wasn’t favourable for lumpectomy… so I was booked in for a Mastectomy…

I was told I wouldn’t need chemo or radio and would just have the hormone medication…

Anyway role on my results post operation told the whole area between the three areas of concern contained cancerous cells plus some micro mets in one of the two lymph nodes removed and that the oncologist wanted the Oncotype test doing as I may need Chemo.

Got a phone call yesterday to say it’s 15 so no Chemo just the hormone… and that I’m premenopausal… pointed out I’ve not had a period since March 28th last year so I’m more post than pre so nurse said she’ll check which I’ll need and they’ll let my GP know… they had said at my appointment that I’d be treated as post and put on Letrozole with calcium supplements and regular bone scans but they’ve written to my GP today to say to prescribe the Tamoxifen so I’m very confused.

I just feel odd right now like I should Be over the moon but I don’t I feel rubbish. I feel like I can’t even get cancer properly enough to need Chemo and that why did they want the test if there wasn’t a borderline concern in which case I’d rather just have the Chemo so I’m not worrying about it… I don’t feel like I’ve any say in any of the decisions that have been made. I had no choice re mastectomy and no choice re Chemo and now it’s different medications than they’ve given me information about.

I’ve got a massive painful ugly scar and there’s no follow up support. And I’m expected to just go back to normal as if nothing happened and I should be greatfull be alive. Obviously I am happy to be alive but I’ve never felt ill. I don’t see how I’m to just accept that I’ve only one boob and a massive painful scar with no one to ask questions like what can I put on it so it’s less red and bumpy and ugly and painful. Work want me back in asap and I just don’t want to facing the public (I currently work in a stressful job where we have face to face meetings all day with members of the public who mostly don’t want to attend the meetings).

Why do I just want to cry.
Why would they prescribe Tamoxifen instead of Letrozole? I am 49 years old. Already having full flown menopause symptoms but never taken HRT.
Why do I feel like I should have been offered Chemo … I know it can make you ill but lots of people function pretty normally on it and at least I’d feel confident that any escaped dodgy cells have been killed.

I feel embarrassed to tell people I’ve been told I don’t need Chemo because they’ll expect me to be mega happy and back to normal asap… I find myself way more upset about the lost boob than I thought I would be. I find the scare horrible to look at in the mirror but I find my remaining boob completely replusive and it looks enormous to me… it honestly isn’t and everyone tells me you can’t even tell I’ve only one boob. I’ve only worn the softy once so far as it’s so painful. But my crop tops are ok without it in and support the remain boob fine (cos it’s small!).

Sorry this is really long.

Can anyone relate to any of this ?

Is 15 a low Oncotype? Is it ok to not have chemo when you’ve had an area bigger than 5mm of cancer?

[flower5]

It sounds like a face to face appointment with an oncologist to talk through your treatment would be really helpful. You could then get an explanation for the tamoxifen decision. From my own experience I am learning that the treatment plan does evolve over time and often without explanation unless I ask.

Your breast care nurse should be able to provide advice on your scar and all sorts of services you can access. I’ve been using these silicon strips called cica care on my scars and they seem to be helping to flatten them and reduce redness.

Oncotype is a score out of 100 with low scores indicating a lower risk of reoccurrence. This article on breast cancer now says women under 50 with a score of 0 to 15 are unlikely to benefit from chemo: Oncotype DX | Breast Cancer Now

[diddy1]

Hi @menopausalmum
I’m so sorry to read this, and it’s a very similar story to my own, so I can relate completely. I was 50 at diagnosis, with 3 invasive tumours covering an area of around 6.5cm and I had a mastectomy and reconstruction. I was fully prepared for chemo, having been told it was very likely, and then my oncotype score came back at 18. As I had no positive lymph nodes (micro mets are considered negative) I was told I wouldn’t benefit from chemo! I was on the one hand hugely relieved, but on the other I felt like you - worried that I was being under treated and slightly panicked. My oncologist explained it all thoroughly though, and told me that with a score of 18, not only was I low risk of recurrence, but that chemo would not necessarily even be effective.
20 months on from surgery, I do still worry that I should have had chemo, but I have to remind myself that the medical team are the experts. They wouldn’t deny anyone necessary treatment - and at the end of the day, chemo is a poison, so it shouldn’t be taken lightly- particularly when the risks outweigh the benefits. in your case, a score of 15 is considered low risk, so try and take heart from that.
You should definitely ask for things to be explained to you in more detail though, it will hopefully make you feel better - and also with regard to your hormone treatment of course. I’m on letrozole, and never really understood that, but apparently my bloods showed I was menopausal!
Were you never given the option of having a reconstruction? It took a while for me to come to terms with mine (I had DIEP flap with a small implant) but I’m glad I did it, and I would have struggled if I’d remained flat too… perhaps it’s something you could consider in the future?

I really hope you get some answers and you start to feel better about it all soon. Your friends and colleagues will be happy that you didn’t need chemo I’m sure, and will not assume you’ve had it easy - you’ve had breast cancer and a mastectomy for gods sake!!

Although I’ve had a few hurdles to jump recently, I’m loving life and have an appreciation of things I didn’t have before. I hope you get there too. Sorry to have rambled on!!
Sending huge hugs xx

[bluesatsuma]

Hi @menopausalmum. I really feel for you because it feels like you’ve been left in the dark. It is emotionally so difficult having cancer and although yours has been successfully treated, it is so normal to feel concerned about not having chemo or radiotherapy. Firstly, I’d say to remember that your cancer is all out from surgery. The role of the tamoxifen or letrazole is to stop your oestrogen production. I am 47 and also had been having big gaps between periods before diagnosis. I had blood tests to check hormone levels and they said i was post menopausal so letrazole was prescribed. My oncologist isnt 100% sure if i am post menopausal.

*blood tests should show if you are pre or post - ask for these
*counselling - macmillan provide counselling free to help you and BCN do a Moving On course
*ask to speak to surgery team nurses regarding prosthetics, recinstruction etc
*speak to work about a phased return, explaining the anxiety youve experienced
*query the tamoxifen - 1 year without a period is considered menopause

I hope you are ok and all the best to you moving forward x

[mary4]

I wasn’t expecting chemo from what my consultant knew/said before surgery. But pst-surgery pathology showed it to be Grade 3, which brought chemo onto the agenda. My tissue was sent for an OncotypeDX, during which time I had appointments to begin to mentally prepare for chemo. Then the OncotypeDX results came back to say I didn’t need chemo. Although I hated the idea of having it, I also found myself disappointed that I wasn’t!
My OncotypeDX score was slightly higher than yours, but they said that for me that is still statistically a less than 1% chance of benefitting from chemo. Every now and then I sit and worry about that 1%, but then tell myself that such a low percentage of risk would be acceptably ignored in other circles of life. Telling myself that doesn’t always stop me worrying but it helps.
I do think though that with all the other things you’ve said, you do need to ask for another appointment with your oncologist to discuss/explain things

[menopausalmum]

I don’t have an oncologist. I’ve only met the breast surgeon who just seemed to want to get rid of me each time. Put lies in a letter after my last appointment on the 3rd March and stated I was post menopausal so would be prescribed letrozole for five years either after chemo if needed or by GP once oncotype back if not needed… then in this weeks letter she’s stated I’m pre menopause and need tamoxifen. I’m only days short of the one year no period and had big gaps over the 18 mths before that one.

I’ve got to go for an MRI tomorrow as I’ve been having awful headaches.

[menopausalmum]

PS thank you for your reply.

And thank you to the others who replied too.

[menopausalmum]

Thank you Blue I’ll do those things. I do feel very alone and apprehensive right now. Worry I’m just being pathetic.

My kids have announced they intend to start doing 50:50 week on week off and they’re dictating change over day. Until now they’ve been with me more as ex worked away when we were married and did nothing when home (I gave up work and moved 200 miles from family to live in his house so we’d have a smaller mortgage) I’ve done the majority of the driving between the houses, I’ve brought all there clothes/make up/stuff and now they are teens they don’t seem to like me anymore.

I could do without such a big change right now. But they are 14&15 (birthdays Sept&August so nearly 15&16) so I can’t say no as they can just do it anyway or worse choose to just stay at their Dads full time.

So they have gone to his and I’ve no idea if they are back Monday or not till next Friday.

Anyway I’ll stop moaning.

[entropy]

I get the worry about should you have had chemo or not. Its a fleeting thought I have to live with now and then, along with fear of recurance- which is bloody hard at times when radiotherapy side effects flare up on and off ( or is it because of recurance, hard to tell?). These are thoughts we are left living with, wondering if symptoms are signs or not.
I had a lumpectomy, with radiotherapy, but no chemo for my 16mm IDC surrounded by DCIS, making it 26mm total area. They refused to oncotest it as it was perceived that the outcome would be low, so I’ll never know my score, don’t have a definitive test result to show that to be true. Further complicated by being Her 2 +++, and no herceptin offered. I would guess I was borderline for treatment as NICE guidance says herceptin treatment for my T1C and above, yet not for me, probably as a rare type thats usually slow growing, but then thats because my type is rarely her2.
I just have to console myself that if it does come back, then there will be lots of drug options to chuck at it, that I haven’t had yet.
I thought initially I was lucky to avoid chemo, only 6 months off work required. Should be back to normal in no time- how wrong I was thanks to radiotherapy and tamoxifen effects ( I’ve stopped tamoxifen).
For me, the predict score is 1.5% benefit for tamoxifen, and I found out recently, the reason I was not offered chemo, was purely based on only a 1.9 % benefit on predict, so if that’s not big enough for chemo, to me it’s not worth the side effects I got with tamoxifen either for less benefit, yet they push you to take it at the time no matter what the benefit is - I would of carried on having it though if the side effects weren’t so bad.
If you’re cancer journey misses some parts out, it often comes with associated feelings that you should be grateful that you’ve not had to go through stuff. While I underestimated what effects radiotherapy can have, I remain so glad I didn’t have to have a mastectomy as you have had, I am full of amazement for anyone who can just get on with life after one. That would not have been me, I still would not trade the radiotherapy effects for a mastectomy. I’d rather have chemo than a mastectomy. What you have been through is no small thing.
There’s also a lot of assumptions attached to age at the time of diagnosis. Data collection, and even medics, are sometimes too rigid in focusing on 50 years being a cut off for menopause, and seem to not account for some being younger or older than that. I’m on the other side and still having periods despite being 53. As I understand it, AI’s have a better effect than tamoxifen for post-menopause, but cAn affect, your bones, wheras tamoxifen can affect the endometrium ( pick you poison really) thats why risk/ benefit is reasonable to consider.
Sorry, this post has got, a tad long because offloading is a thing that happens lol.

[menopausalmum]

Thank you for your reply

[naughty_boob]

Hi @menopausalmum

I’m so sorry to hear how you are feeling. I think many of us have felt like that at some point. Don’t ever feel like you should feel like you ‘got off’ easy because you didn’t have chemotherapy. Many people have surgery and radiotherapy with hormone treatments if required. Some breast cancer diagnosis need chemotherapy such as triple negative as theirs are not hormone positive. I was ER+ and HER2+ so had chemotherapy because I needed Herceptin. Everybody’s treatment individualised to us. We have all been diagnosed with breast cancer.

You are definitely not alone in feeling that your scars make you upset. It took over a year to even look at mine. It was a cancer physio that mentioned it and I cried. But I managed to do the massage she recommended to help with the soreness and I regularly look at them in the mirror. I had a bilateral (both) lumpectomy and sentinel node biopsy for two primary cancer, one in each naughty boob!

A wonderful charity called Penny Brohn have many online and in person, if you live near Bristol or can travel that can help you. If you click on the pink link it takes you to a scar therapy workshop held via Zoom, which I found really informative.

Your breast surgeon and team will have spoken to an oncologist within a multi disciplinary team (MDT) but you probably won’t have spoken to an oncologist unless you need chemotherapy or immunotherapy. The NHS use the Predict scoring system to decide what treatment is right for you. Here’s the link https://breast.predict.cam/ it’s always advised to talk to a specialist about this. It should be on your notes so don’t be afraid to ask.

I’m sorry to hear about your children wanting to change their living arrangements, maybe they are feeling anxious and scared about losing their mum. You and them can access help from Breast Cancer Now and other charities( see links below), I highly recommend the Moving Forward course where you can hopefully find others locally to you that you can connect with.

• Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
• Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
• Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
• Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.

MacMillan have lots of online and phone help including the HOPE course. I don’t believe they offer counselling any longer. and Maggie’s if you have a centre near you.

As far as work is concerned, you are now disabled under the Equality Act 2010 and they should make reasonable adjustments for you and should not be pressurising you to return if you are not ready. You may be able to access Personal Independence Payment Personal Independence Payment (PIP): What PIP is for - GOV.UK or Employment and Support Allowance. Employment and Support Allowance (ESA): Overview - GOV.UK.

There is a fabulous charity calledWorking with Cancer who can help you and your employer with a way forward. Breast cancer now have done a live with the charity https://www.youtube.com/watch?v=DE7R0NZaftw

I am unable to comment on the Oncotype as I was HER2+ so it was applicable to me. I hope someone else has been able to advise, but I would recommend a chat to the BCN nurses to talk this through.

I hope this helps

[wee-emm]

I’m not sure I can help overly but I did have the expectation being post menopausal that I would be given Letrozole. I was given Tamoxifen and the explanation was that in post menopausal women it is actually better for bone health. Hope this helps a wee bit. Sorry you’ve been through so much, wishing you well x

[entropy]

I’m feeling that your pov, may be clouded by other things that are going on in your life. A relationship breakup is always tough where children are involved, and now this on top. It must feel like life is giving you lemons at the moment, so its no surprise to be on a negative slant about things.
Its doubtful your surgeon lied, he wrote correctly based on what the plan was and what you’d said about being menopausal and he has nothing to gain by lying. Its the person filling out the prescription who either got it wrong, or was informed wrong. It should be a simple fix though, just ring your breast care nurses, they are often the ones who fill in the prescriptions anyway, they will be able to sort out the correct one for you, or at the very least explain why there has been a change ( sometimes if there is uncertainty with menopause, tamoxifen might be used for a couple of years before switching to an AI).
Maybe after your treatment there will be a time to consider options for the future, but you have enough to deal with now, so it may not be the time to make big decisions.
Your children will come to appreciate all you have done for them growing up, if not now, in time. For now, however, the stress you are under and the situation, might be making it more stressful for them to be around, and a break for them at times, might help them to deal. Its not easy to paint a brave face on and behave the way you always have under the strain of it all.
You might find counselling helpful meantime, it’s important to reach out for help and there is lots available via Mcmillain, Maggies, or through your BCN’s. You need not struggle alone.

[Bernard_BCN]

Hi @menopausalmum, I’m sorry you’re going through a rough time.
Please don’t apologise for moaning, and you certainly don’t sound pathetic. It’s normal to feel low when we face challenging situations.
What matters is you found our forum, and you know where our support is. If you need to chat to someone in our nursing team, you can call us on freephone 0808 800 5000 (Mon-Fri 9am-4pm; Sat 9am-1pm) - there is no question too big, and no question too small. We can take things at your own pace, and go through the issues that matter to you. I promise you our nursing team is non-judgmental of anything else that may be going on that you may wish to share.
We’re here if you need us.
Sending a gentle hug your way
Bernard

[menopausalmum]

Thank you. My daughters aren’t bothered about the cancer. As far as there concerned it’s been cut out so I’m ok now. They definitely aren’t worried about losing me as they know I’m not sick or dying.

[menopausalmum]

She definitely did lie as I had a friend with me. She’s written that I’ve always wanted to be flat chested and this is why I’ve refused a reconstruction.

1. I never said I’ve always wanted to be flat chested I didn’t get cancer on purpose to get a boob cut off. I said I was always happy that I have small boobs. That I have always liked my small boobs. But that now one isn’t there I find the remaining boob looks huge and ugly.

2. I hadn’t refused to have reconstruction I just said I wasn’t sure about having it straight away as I didn’t want a longer time in hospital and shower recovery as I was worried the affect this would have on my daughters and who would look after them if I had to stay in hospital for a few days. I also said I’d heard horror stories that they don’t look natural and have odd lumps etc and I was also concerned that I might get to 60 or something and have one pert boob and one that’s drooped due to getting older.

[menopausalmum]

And my marriage break up was years and years ago we’ve been divorced and through court years and years ago. Im
I’m Definitely not clouded by it in any way shape or form. I’ve been meaning to post for a while. my daughters dropping the bomb shell of wanting 50:50 last week was just an added bit of news I could of done without but I’ve got more used to the idea now. Their Attitude towards me doesn’t help how I feel as they think I’m fine and need to just get on with life. Which I know I need to do cos I am mostly fine but mentally it’s not always a simple.

[rhiannan]

Hi,

I’ve pretty much had the same situation as you, apart from my initial journey meant my Lymph Nodes were removed separately as they couldn’t get a clear biopsy result.

I had my mastectomy 4 weeks ago, I was hoping to have a tissue reconstruction, but didn’t have enough tissue elsewhere so opted for an implant. Which I’ve had an expander and that will be replaced in 6 months time.

I got my results last Friday and like you, no chemo, no radiotherapy just Letrozole. I’m 54, but had the coil so wasn’t sure if I was pre or post menopause as I’d not had periods for years! They took blood tests which confirmed I was post they had said if I was pre’ I couldn’t go on Letrozole. They did this before any of my surgery as I had a family holiday booked 2 weeks away from when they wanted to do surgery, so they did the tests to see if I can go on Letrozole to allow the holiday. Hence I’ve been on it now since December before I had either of my ops.

Just like you hadn’t heard of anyone not having chemo or radio’ whilst I was really happy, I also felt concerned that I should just have it as an extra precaution. But, having lost my Mum to ovarian cancer 20 years ago, I trust that things are now so much more tailored to the individual. So am happy to go with what the medics know.

I know nothing about Tamoxifen, but could this be because it’s not clear if you’re pre’ or post’ menopause? I’m sure if you talk to them with your concerns they would do a blood test to confirm and put you at ease.

My take on the whole journey is that they don’t like to bombard you with too much information so only give you what you need at that specific time, unfortunately though I think they do get lost in what has and hasn’t been explained and have always made it clear that if there’s anything you’re not sure of or they’ve not explained just ask. You’re quite within your right to call them and say you’d like an explanation why they switched meds.

Also I completely empathise on feeling guilty about not going through chemo. I have a lot of friends who have had lumpectomies and needed both chemo and radio. I felt embarrassed to tell them I didn’t need either. For me also as I’ve had the immediate implant in clothes I don’t look any different, but mentally it’s a challenge for me as soon as I take my clothes off as my nipple was also removed. It’s very hard as I actually want to walk around with a sign on to say I’ve just had life changing surgery! One friend even said to me jokingly, you don’t look any different, I think you’ve made it all up! I know she was joking but it really got to me.

I’m also about to jump on a work call today to organise start date to go back. My job also stressful and long hours and based on the lack of obvious physical/mental challenges I’m worried my boss (who’s a workaholic) will expect me to just jump straight back in, whilst mentally and physically I’m still extremely tired.

With regards to scars, you should be able to get recommendations on what to do/use on it, I’ve not had any but am aware there’s lots that can be done, massage etc. If you feel really uncomfortable about being flat, you can always talk to them and discuss a natural tissue reconstruction, which can be done later on.

That’s a very long answer to you. But hope it helps.

[naughty_boob]

Hi @rhiannan

Thanks for sharing your story. I hope the links I posted earlier will also help you with going back to work.

Just remember you are now disabled under the Equality Act 2010 with your cancer diagnosis and you employer ‘should’ make reasonable adjustments if needed. The key word is should as they can say no for operational reasons. I would also suggest an occupational health referral.

[astrobiker1]

I was diagnosed with a 15mm tumour back in October. I was immediately put on Letrozole so I could go on holiday and wait until there was a slot available for surgery and IORT together. Thats radiation done at the same time as surgery. I didnt need Chemo as was delighted. I had everything done in one slot which was fantastic. Time to move forward and no worries now. I trust the opinion of the breast surgeon as she is the expert not me.