Please come and tell me your positive breast cancer stories.

[peaceanddove]

So just been diagnosed with invasive ductal carcinoma, picked up by a routine mammogram. It's been caught very early apparently, but will be having a lumpectomy followed by radiotherapy. I will also have to take something like Tamoxifen for five years afterwards.

To say I'm shell shocked is an understatement. I don't want to Google too much incase I read anything more upsetting, so would really really appreciate stories from anyone who has been similarly diagnosed but got through it and is now back to normal. If you can help, thank you so much xxxxxxxxxxxx

@peaceanddove with chemo and radiotherapy, it's not really a case of either/or. Treatment varies a lot depending on individual circumstances but in my case, I had chemo first to try and shrink the tumour so that I could then have a lumpectomy. It shrank a bit but because it's location, they decided it would be a mastectomy after all (boob would be v misshapen if they left it). Generally with a lumpectomy you have rads too. Also, rads if you have lymph node involvement regardless of mastectomy/lumpectomy.

What sort of age are you? I was around 46 at diagnosis and I had IDC, ER/PR+, stage 2, grade 2

Re Tamoxifen, v few side effects just got a bit fat and the v important thing to remember is that if you do have side effects, switching brand can help a LOT

Diagnosed 2012, mastectomy of one breast and lump removed from the other, followed by radiotherapy, Zoladex (which was stopped after three months trial because it left me exhausted) and five years of Tamoxifen (which has since been extended for another five years).

In 2014 I chose mastectomy of the remaining breast (it had too many pre-cancerous changes for me to feel happy keeping it) and had Diep reconstruction (which uses skin and fat from your tummy) of both missing breasts. The surgeons did such a marvellous job I forget they're not real most of the time.

I suppose I also forget I had cancer most of the time except that I am conscious of how extraordinarily lucky I am to have had it in an era and country where I had access to the very best treatment. I will forever be grateful to the wonderful staff of the NHS hospital who treated me.

Good luck peaceanddove. I hope it will be a dim and distant memory for you too one day.

And to add, I’m now mid thirties and the drs are trying to see if the breast team will start annual screening for me (family history beyond my mum). I’m hopeful that they will because the last time I saw a consultant for a lump he was very adamant that I should be looking at this route. His words were ‘I don’t ever want you to find a lump, if anything develops I want to find it early’ which, to me, suggests that your discovery is pretty good in a way. It’s clear something would develop but they can treat it early this way

Hi. I had invasive ductal grade 2. Discovered in April 2017. Lumpectomy in May. Operation is fine. I was in a cafe the next day!. The most hurty bit is the lymph node biopsy bit and your under arm will lose sensation. Do the exercises - really important. Unfortunately one margin wasn't clear so had margin clearance in June, then not clear again so another one in July. Final one in August. We are talking teeeny tiny weeeny cells that are detected now because of the microscopes they have now. All clear ( last op was harder going). I was unlucky though but it isn't uncommon to undergo one margin clearance. I had the original cancer sent to California for oncotype testing to see if I needed chemo and I didn't- hurray! Radiotherapy in October. That is fine. Just keep on with Aveno cream and realise that the fatigue will hit. For me, I worked the first week but then had to stop. Then was on letrazole until fairly recently. Went through chronic fatigue type symptoms. Cancer leaches calcium from your bones so have six monthly infusions of bisophosphonates. Now on tamoxifen because it's better for bones and onc is more worried about me crumbling than cancer. Feel fine again and no more fatigue. I would guard against too much reading the hormone therapy forums on Breast Cancer care. They are rather doomy and gloomy but you don't know what physical state the posters are so don't be put off too much.

All in all, a friend of mine has a heart condition and my cancer has been easier and a lot less life changing than her condition. What you may find scary is other people's reactions to the c word. Also, you will get pissed off with a) The Macmillan adverts b) people talking about 'battles', 'fights' - the most important person in your life is the pathologist and their microscope., c) people looking at you slightly amazed and saying 'but you look so well' because you don't look like the Macmillan ads.

It will be fine. The waiting bit is the worst as is waiting for results. The best bit is the radioactive dye that turns your wee into an amazing colour!

I git called back from a biopsy after a dodgy mammogram in 2012: Urgent call to see surgeon 3 days after I got married! Had 4 tumours scattered on the underside. Had a partial skin saving mastectomy so I still have a cleavage with my falsie in. Then 6 months of chemo and a further 3 weeks of daily rads. The anti nausea meds meant it wasn't to bad, but got bad on my feet with nerve pain. The worst bit was the tummy injections after chemo to build white cells up.
I was too wimpy to do them so health visitors came daily. My tummy ended up black and blue. I then had liquid morphine for the god awful pain in my bones for that.
Then my veins collapsed so they put in a hickman line and that was just nasty. Local anaesthetic kept wearing off and I was screaming, but it was worth it as it meant no more jabbing for a vein. And they took blood out of it as well, so that saved more pain.

And don't go out for about 2 weeks after chemo as your immune system doesn't exist. I made the mistake of getting bored and going shopping. Cue a week in isolation with neutropenia (I'm an idiot).

The rads were fine. I used the aqueous cream they recommended religiously and didn't develop burns, but I was so so tired. Bone deep exhaustion.

Then 2 years of tamoxifen but my bladder started playing up, so I'm on exemestane now. My libido has sadly vanished and my poor vagina has dried up like an old leaf. My gp has just started me on estriol creme, which is a type of low dose hrt that you pop up there. Supposed to be ok even with hormone receptive bc. Fingers x-ed that it works. Haven't managed full sex for a year. I'm missing not wanting it and poor DH is very tolerant, but happy that I'm trying to sort it out. Also having dexa scans every 2 years as the exemestane leeches the calcium. Got osteopenia- sigh. The gift that keeps on giving. 3 years to go before I finish everything.
I was 47 when diagnosed.

Sorry if it's a bit graphic but there's no point in saying that it'll all be fine, as it won't. There will be days when you just want to scream and cry , but that's fine. You have every right to do that. It's pretty shit at times but I'm alive and enjoying life now, so it's just something to be endured.

weehoo I am so grateful for your post, it really helps. I am 49 and diagnosed with exactly the same as you, but there's no actual lump as yet. I'm keeping everything crossed that I can just have the lumpectomy followed by radiotherapy. This is partly for selfish reasons but also because it will be easier keeping it from our children. It helps me to allow this as little impact as possible. But I know I"m probably being very naive.

Thank you so much CatChant, your post is very reassuring to me. I very much hope that I can reach the stage where I can forget about all of this most of the time.

Please don’t keep it from your children. By all means wait a few days until you have a ‘plan’ and can tell them more, but don’t keep it a secret. I cannot bear the idea of not knowing about mum’s cancer, and had been different I would have had less time to get my own thoughts in order

Take Your Rubbish Home, thank you for sharing this with me. You make a good point about your consultant saying he wouldn't even want it to get as far as a lump. I don't actually know how early I am to be honest. I really hope you get offered yearly screening. Would having it done privately be an option for you?

Thank you flying archer what you shared is so useful to me. To be honest I'm not too scared about the physical side of things, I will take any amount of discomfort so long as my mood doesn't sink to the depths it was in back when I had my peri menopause anxiety/depression. Taking HRT and sertraline virtually cured me of all that, it was such a relief. I am so worried that stopping HRT and taking Tamoxifen will take me back to that black place

babyshark I appreciate you being so honest with me, thank you. You sound so brave with all you have been through. And it's very reassuring to read you're enjoying life now. How have you managed to put it to the back of your mind?

Thanks @peaceandlove I should get screening from 40 anyway, we are just seeing if we can shift that forward a bit. Partly because I have lots of benign lumps and I end up seeing them every 18-24 months as it is when one changes. So far all have been fine, but it would be easier to have access to routine screening

takeyourrubbishhome It wasn't an easy decision to make, but they're both in their exam year so want to avoid stressing them. Obviously if my treatment turns out to be more extensive we will have to tell them. But I'm really hoping it will just be a day surgery followed by radiotherapy for 3 weeks. If that's all it is, then they should be none the wiser. I do intend to tell them in a few years though.

I know it’s not easy, because I was doing my A levels and my sister was doing GCSEs. And similar timing actually, mum’s diagnosis was on pancake day (couldn’t face a pancake for years after). And I guess you might get away with it if you don’t have chemo (they will have to know if you have chemo because it affects their social life a bit too, they have to be careful about colds and flu etc). But as hard as that year was, I spent a lot of time with mum before going to uni, in a way that I probably wouldn’t have otherwise. We made a lot of memories (even though chemo brain means she doesn’t actually remember most of that time). I just think the longer you keep it from them the harder it will be to share. At least now you could say that you’ve got some cancerous changes, it’s been caught early, and you’ll have treatment for a short while and then everything will be ok. But you start the grieving process together, and it is a bit of a grief thing really, everyone considering their own mortality. The numbers are very much in your favour though and that should be made clear to them

That's useful to know takeyourrubbishhome and given me a lot to think about. Thank you, I need to ponder this a bit more.

I mean, obviously, it was incredibly shit. We all sat and cried and nobody really ate anything for a couple of days (but my dad kept those damned pancakes coming). But if you don’t tell them, you’ll have a hard time telling other people. Because it will need to be kept secret. And even then I think I would have struggled with other people (friends, relatives) knowing and not me. But it actually united us. If you’re in any way close to them they will know something is up anyway, and then they will just worry what it is

Actually we don't intend telling anyone, if we can possibly help it. We are close but I'm a pretty convincing and they're very wrapped up in their friends and partners.

I know it's early days peace but dont underestimate the strain on you and your DP if no-one else knows. I held off telling my DC for a couple of weeks and they were unhappy about it though accepted our reasons and insisted we promise not to keep anything from them in future. They are a little older, early 20s but both at key points in their lives.

This BLOG is worth a read.

The surgery is the easiest bit IME but even so I was unable to do much for a week. I'm mid radiotherapy at the moment and it's not too bad but I have to travel to hospital every single day at the same time for three weeks. How on earth would you do that in secret?

Hi Skap. The logistics won't be too bad actually, because the clinic isn't far and DH very happy to be my taxi. Our children will have left for school before we had to leave the house etc. My boss is aware and is very supportive. If our children were in their early twenties like yours then I would tell them. I'm tempted to just ask for a double mastectomy because I know what I'm like and the fear that it could come back will always haunt me. Also my boobs are uncomfortably big and droopy making me suffer with neck and back ache. I would just tell people that I was finally having the breast reduction surgery I've often wished for

How are you finding the radiotherapy.

No side effects so far, I think the main ones tend to be fatigue and some skin soreness. After 5 sessions my breast feels slightly warm that's all.
They give you the appointments at the same time of day for three weeks so mine are all at 930. The hospital is an hour away and its perfectly possible to drive yourself, I had planned to but have an arm injury so DH and DS2 are taking me. The process only takes 20 minutes but they often run very late.

Honestly, I would tell them. I get why you don't want to but you won't be able to disguise the surgery - they give you a chest binder to wear for about a week and it is obviously lumpy. You won't be able to drive for two weeks. You won't be able to lift stuff and you will need tons of rest. Radiotherapy has extreme, really extreme fatigue so you will have to pace yourself. I worried about telling my two, one of whom has ASD and always been very anxious about cancer. They were great. I did play everything down and to be honest probs did things I shouldn't have done to make everything normal. They didn't see any of the emotional side.

Better that your children know than they worry needlessly or overhear phone convos. Also you will be coming home with eleventy billion leaflets. Also, if they are at school, they can talk to someone without bothering you. I teach and had a girl fall to bits because her mum kept it secret but then had to tell her due to chemo. It was worse than if she'd known all along.

Hello peaceanddove. I'm glad my post was some reassurance. I just wanted to add that I would reconsider telling your DCs and close family.

Surgery can be quite debilitating and lymph node biopsies are painful while they're healing - I used to say it felt like someone had stuffed angry porcupines into my armpits. And radiotherapy is tiring, can burn your skin and in my case, made me very nauseous, because the radiation field covered part of my liver.

So the chances are you're going to be under the weather for a couple of months and you might worry your DCs more if they don't know what's happening. My eldest was in the first year of her GCSEs when I was diagnosed and I did worry about it distracting her but I felt I had to tell her (especially as at that point I'd been told I would need chemotherapy - I didn't in the end because I was very lucky and it hadn't reached my lymph nodes after all).

I won't pretend my DD wasn't upset but I stressed that the odds were very much in my favour and she would say now that she was glad that she knew what was happening and that I didn't appear to have a mysterious illness. And she did extremely well in the GCSEs so the news didn't affect her work. I did tell her form teacher, on the hospital's advice, so the school would know to make allowances for any extra scattiness on her part.

We also told close family and friends, partly in case we needed help babysitting the youngest, who hadn't started school at that point, and because I think it was comforting for DH to have someone to talk to about his worries. Having cancer is frightening but having a partner with cancer is frightening too.

Tamoxifen has not been that bad. It has thinned my hair (this doesn't happen with everyone and I don't think it's noticeable to anyone who hadn't seen my hair before), thickened my waist (very common) and made me prone to leg cramps - but these can be controlled by regular exercise and drinking plenty of water.

Gosh, that turned out to be an essay. I hope it is some use!

Just to add to what CatChant said, that you won't know for certain whether you need chemo until after surgery. Also the surgery sometimes has to be repeated if they don't get a clean margin.

@peaceanddove , the thread has moved on a bit I know but I wanted to reply! I've had problems which I assume are down to lack of oestrogen,so vaginal dryness,lots of problems with vulval soreness and bleeding.I thought for a long time I had vaginitis but it's vaginal atrophy.
I now use Vagifem and thats 100% better.Also I've had bleeding probably related to thickening of the lining of the womb which is a side effect of Tamoxifen,you have an increased risk of cancer of the endometrium.So I've had a couple of hysteroscopies and now have the Mirena coil fitted which hopefully is helping with that.
The breast cancer clinic are happy for me to have both the Vagifem and the Mirena coil,even though my cancer was both oestrogen and progesterone sensitive,thought seems to be that not enough is absorbed into the body away from the gynae bits to increase risk.
But I was fine for the first five years,when the oncologist discussed continuing tamoxifen my reaction was why not as I'd had no problems at all on it.

Sorry,posting again to add about children.I think you said you are 49? I was 49 at diagnosis,my son was nearly 8 and my daughter was 13. So younger than yours,easier in some ways.We talked to them about it from the beginning,but in a very matter of fact way,initially just about the hospital visits,and what was happening at them.I told my close friends,my son's teacher and friends at the school - don't underestimate how kind and supportive people can be,I so appreciated the help with school runs,having DS to tea etc when I couldn't drive and when DH had to be somewhere else, even from people I wasn't so close to.My son's teacher told me about her own mother's experience and how well she was now.
And I'm quite a private and introvert person usually