Hi ladies
I am relatively new to the forums.
I was diagnosed with a 4.9cm invasive lobular bc in Oct last year and had a MX with LD recon. About 8 weeks ago I had my healthy breast reduced and lifted to bring it into line with the recon, Other than that I am on Tamoxifen.
I am incredibly lucky in that I have good medical insurance and everything was done privately but the one problem with that is that I have never met any other women going through the ordeal of bc. I live in the Guildford area and would love to meet up with someone. My OH and my friends have been fantastic but I have never had the opportunity to speak to anyone who really understands.
My other problem is that I feel kind of guilty when I read the forums… that I have got off quite lightly
No lymph involvement
No chemo
No rads
Absolutely no side effects on Tamoxifen other than the odd missed period
Because of all this I sometimes feel as though as I have nothing to complain about
Does anyone else feel like this?
Dear QRT,
Don’t feel guilty and don’t feel alone - I don’t think anyone gets off lightly when it comes to BC, in whatever form or whatever treatment is given. Mx and recon on their own was an enough of an ordeal for you to go through, in fact, anyone in the waiting room who doesn’t know their fate yet has an ordeal to endure too, whatever the outcome.
I too haven’t met anyone physically yet and I’m sure I will one day, but for now, I feel like I have loads of friends on here who I can share experiences with, whether it be moaning about inappropriate comments people make, to sharing my current chemo journey with others at the same stage, or just reading through recipe ideas.
Everyone can always find something to complain about (human and british nature), and probably even before BC touched their lives, so please don’t feel alone, there may be others near you to meet up with but I’m in Preston and if you’re ever ‘ooop north’ give me a shout, but in the meantime, read a few threads and jump in where ever you feel comfortable, there are plenty of supportive ladies here to welcome you and share some virtual time with.
Bev x
I too have had a mx but with delayed recon.
Hi there…
I know exactly how you feel.
I was diagnosed Feb 2010, and like you I had everything done via my PMI. The only people ‘I knew’ that had BC, were the ladies I met here. I wish you had found us sooner.
Unlike you, I had the lot; surgery, chemo, rads, tamoxifen…
You need to know that the feeling of ‘guilt’ that you have may not be because of ‘getting off quite lightly’… like me, maybe because the PMI experience can be isolating.
The day I met others with BC was so great…a real turnaround for me.
I am not near you, but work in London… assuming that with your avatar, you are here frequently… would be really pleased to meet up.
Please PM me if and when you want to
Marguerite
Hi QORT,
I feel the same, although there is always the thought that it will come back. I had a 7mm ER+ IDC diagnosed March last year, no lymph involvement, no chemo and I declined rads - (that may come back to bite me). I did have a clot at the back of an eye after a couple of months so was taken off tamoxifen and I am controlling the arimidex side effects with supplements.
My damaged breast looks revolting and they accidently mashed off a piece of nipple during a second biopsy. But I have been offered a reduction in the good side and a cleanup and filling on the damaged side and although I am nervous about that, the whole thing has made me look at my diet and I’ve made some changes there so all in all I feel bloody marvellous.
I think a lot of people just want to get on with their lives so don’t post on here much. I just lurk and try to keep up with the research and diet thread when I have time.
I hope you manage to meet up with people near Guildford.
cheers
Queen,
You have shouldn’t feel guilty. You have had a MX, reconstruction and you are coping with cancer just the same as everyone else. Not everyone gets side effects from their hormone therapy; many don’t suffer but we probably don’t hear from them often enough. I was node negative and I sometimes feel guilty about that because there are so many here that are not, so I get how you are feeling. But it is just the way things are. We all get dealt different cards.
I hope someone near Guildford gets in touch with you. I have seen Guildford mentioned a few times so I know there are others near your home. In the meantime lean on your friends and family as much as you need.
Thank you all so much for replying to me so quickly
Beverlie
… you are right the waiting room stage was definitely the worst, I was so scared and sometimes I still am.
I do feel that I have very little to contribute to the forums for all the reasons I stated earlier but thank you so much for your kind words. Although I live near Guildford I am originally from much further north than you! x
Oscarbailey
… I think you are right, it has been quite isolating and i do look forward to the day when I can meet others with bc. I dont come up to London very often although I did spend a small fortune in Rigby and Peller last week getting fitted for my first post surgery bra! It is really kind of you to offer to meet up and I may take you up on it soon. x
Surfie
Strangely like you, I do feel generally better than I have for years. I had started eating healthier just before I found my cancer ( I had just got to that age where it was now or never! ) and have continued to do so and I am actually fitter and slimmer than I have been for a long time.
I’m sorry you are unhappy with the way your breast looks. I was very worried about having my reduction op on my healthy breast and immediately after it I did feel that I made a mistake in having it done… I felt as though I had lost my other breast… but now I am very happy I did so as the overall appearance is much better ( ignoring the scars that is!) I hope you will be just as pleased. Now I am just looking forward to getting a nipple before Christmas! x
Cherryorchard
Thank you. It’s good to know others don’t get side effects because sometimes I worry that it’s not working properly. Not so much as a hot flush! My oncologist has reassured me but…x
Again, thank you all so much… it’s lovely to know that you are there to talk to x
QRT, I’m in Guildford, fancy a coffee some time?
And for goodness sake don’t feel guilty because you’ve ONLY had a mastectomy and reconstruction and Tamoxifen, there’s no such thing as Cancer Lite, every instance of it fills me with horror. Actually, you’ve had the one procedure that would fill me with dread, the thought of having a breast amputated brings me out in a cold sweat, so I feel really lucky that I’ve avoided that particular “pleasure”. Nothing to complain about? Absolute rot, you have plenty to complain about so just you carry right on if you feel like it.
If you want to meet some “real people”, do you fancy coming on the train to Reading on 29th? There are several people meeting up (must bump up that thread) and it was a total hoot last time. No restrictions on who’s allowed to come - from hairy to bald, two boobs to none, young to old, all welcome.
Don’t feel guilty - you’re going through a lot, mx and recon is no walk in the park - neither will the worry it’ll come back!
I’m sure at some points we all feel guilty, I’ve read some stuff on here of people with secondaries who are having a terrible time and have end of life to consider and I feel a mixture of lucky, guilt, pain for them, almost as if I’m an imposter and I’ve had a WLE, having Chemo, Rads, Tamoxiden and been told that it’s virtually impossible for me to concieve now though going through 5 years of trying to conceive with cycstic ovaries, a miscarriage and a year of fertility treatment before BC diagnosis - so no walk in the park.
I read one sad story about a lady who was making a plaster cast of her hand for a memory box for her daughter, so her daughter could hold her hand when she was gone - I broke down reading that and felt like a right whinger!
It’s part of what makes us human and emotive, having feelings of guilt, what you are going through is unique to you and it is a bit of a lonely feeling, I totally get that, don’t think my friends really get it all or feel like I need leaving alone when I dont.
This community on here is a godsend and I feel like I have a voice on here - use it and don’t feel bad.
xxxxx
EK
Thank you for your kind words.
Imposter!
That is exactly how I feel!
Not at the beginning when I was in the middle of scary tests and the endless waiting… then everything felt very real… but now … in fact If anyone sees me who hasn’t for a while they are shocked at how well I look!
I have always been very good at putting on a face and making jokes about my cancer ( God forbid anyone else who does though!) and with my clothes on… no sign that I have had anything wrong with me!
I feel desperately sorry for all you and all the other young women ( I"m 51) who have had to go through this and who have had their fertility compromised. One of my closest friends has been going through IVF and I know the heartache that it’s failure has caused her.
I will try to use the forum more
Thanks for understanding x
CM
I would love to meet for a coffee sometime!
Isn’t it weird, how we are all terrified of different things? The thought of losing my hair filled me with more dread than losing my breast… and that doesn’t grow back!!
You are right… I do have the right to complain but it is difficult when I read all the awful stuff the girls on here are going through.
Reading sounds great but I can’t do that date, maybe I could make your next meeting
x
Hi QRT
Know what you mean about feeling like an imposter! I used to walk into Christie Hospital for my rads treatment feeling like a total fraud because I looked and felt so well, and the waiting room was packed full of people who looked so very ill. It made me feel terribly guilty, so much so that my GP had stern words with me about it and pointed out that just because some other people had a rougher ride than me was not a reason to feel guilty and that I should make sure I do what is best for ME.
If it makes you feel less guilty you could always keep your fingers crossed and hope that you start to get SEs from the Tamoxifen LOL!
Sarah x
Hi CC
its a ridiculous way to feel isn’t it?
In my own little world, what I have been through is huge but when you compare it to other people’s experiences it seems almost minor.
Even I do not feel guilty enough to wish SEs from Tamoxifen on myself, although I would like it to stop my periods altogether.!!
It has actually given me one SE… no more migraines!!! Not one to complain about though…
I think I could do with a talking to from your GP
Elaine x
Elaine, it may be much less than others have gone through, but it’s THE MOST that YOU have ever been through so in that respect it’s absolutely massive! So let yourself acknowledge the horror of it, while of course being very grateful that it wasn’t any worse than it is.
CM
Thanks again for your wise words x
Elaine,
Tears welled up when I read about the hand cast as well and also when I read of girls in their twenties and early thirties being diagnosed - I do start questioning what is causing this epidemic.
I too had just lost a stone when I was diagnosed and was trying to beat my icecream addiction. It was a real wake up call all round.
I’m not sure if I need to meet fellow survivors or not as I am naturally a bit of a loner. I have been to a couple of BCC talks in the nearest city and prior to that I met one woman through the forums.
I wish I’d found this site earlier than I did as I’d have realised earlier that the initial ‘head spinning’ was completely normal - it was so nice to read that all those feelings I had were the same as other people.
Thanks for reassuring me about the reduction, I’m not sure when mine is happening.
All the best and I hope you have a fun time with CM.
Margaret
Hi queenie!
I have felt as you have, lonely, sad, even angry, when people on the forums, tell others oooh you’ll defo have chemo cos of your age! Well at 37 I don’t consider myself REALLY young but certainly not ancient either, I also haven’t met any others in the same boat, but that doesn’t bother me now, although when first dx I would have loved to have met someone to chat to.
As for tamoxifen, I’ve had a few warm moments at night, and a strange thirst thing, but other than that nothing, not even a late period!
As more time passes, I’m sure things will get easier, so don’t wish any SE on yourself, enjoy life! And drink lots of coffee with choccie muffin n crew! (another northener here)
Take care x
Queen,
I have had exactly the same as you and feel EXACTLY the same as you! I feel like i cant say that ive had cancer cause ive not suffered the same as others have on here and yet im almost proud to say that ive gone through mx and disastrous recon (6 surgeries!) and reduction and uplift and yet im now back to work and dealing with some very challenging situations, just like my fellow colleagues (police work) all within 10 months.
I have found it harder since the treatment stopped cause i feel that nobody understands how i feel. why i still have “down” days and why i cant just “move on” and not worry about it coming back.
I think no matter what treatment we have all gone through, we all have the same thoughts and worries.
I belong to a local support group for young women (20,30 or 40’s) and its really helped to be amongst people who understand.
best of luck to the future for you.
deed
x
Thank you all so much!
It’s such a relief to know that other people have felt the same guilty feelings as me and that people don’t think I’m nuts
Deed… six surgeries within ten months!! I thought my three in six months was fairly impressive! I am so sorry your recon was disastrous, I hated mine at first but I am now quite strangely proud of it, actually I prefer the shape of it to my natural one,it will be nicer when it has a nipple… of the non stick -on variety!
Surfie
By the way, my biggest fear before my reduction was that I would lose sensation in my remaining nipple…given that I have next to no sensation on the left side of my chest and some of my back… but what I got was increased sensation ( my OH and I now refer to it as SUPER NIPPLE! )
CCL
I think 37 is very young but then I am 51! Reassuring to know that absence of SEs with Tamoxifen is not that rare
I am so moved by the comments I’ve had here… I will try not feel guilty anymore… just lucky! xxx
Good way to view things - lucky to be here! And like you I don’t get many side effects from the Tamoxifen, just a few night sweats. I say “just”, sometimes the resulting lack of sleep has driven me crazy, but compared with what others go through…
Like you I’m 51 so still a youngster! But I suspect that the fact that at our age oestrogen levels were already falling probably makes it less of a shock to the body (and mind!).
Sarah x