Hi everyone,
This is my first post, have read lots of yours and feel this has helped me already! I was diagnosed on 8th April with breast cancer, multiple in my left breast, grade 1/2 the biggest being 15mm. I am to have a mastectomy and have asked for the other one which is ok to be removed at the same time as I lost my mum and her sisters to it.
Just been to see the plastic surgeon and have to have a sentinel node test on 26th April, the results will determine if I am able to have reconstruction, if radiotherapy required I have been told I can’t. Highly likely to receive 6 months chemo and after further investigation will be told further treatment.
I’m 44, have two wonderful girls ( 9 and 11) and husband who have been fantastic, though my little one doesn’t know. Have had a whirlwind two weeks, cried alot, been ok one min and not the next. Some people are very positive, some I can see don’t know what to say and have me ‘a gonna.’
Feel so selfish when I read your experiences, there are lots of you out there who are truly inspirational. Hopefully will have my op second week in May - is this normal to wait 4/5 weeks? Keep thinking the cancer will grow and spread in this time though my nurse teels me not?
I think the waiting is the worst, I know the treatment is inevitable and just want rid of this. I’m also experiencing tingling and soreness in my left side where I had a cpl of biopsy’s and keep thinking it’s spreading down.
Am scared about it all but want to get started. Would appreciate any advice and support, lots of love and hugs to you all.
Good morning dancer1
Firstly, welcome to our forums, you’ll find lots of support and information here I’m sure.
I thought you might be interested in our Resources Pack so I’ve given the link below for you where you can order a copy if you think it might be helpful.
Its filled with information to help you better understand your diagnosis, test results and the various treatments available.
breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/
I hope you find this useful.
Kind regards.
Louise
Facilitator
Hi dancer1
What crap news for you, but welcome to the site. I think most of us found the first bit just after diagnosis the most difficult to deal with, particularly The Waiting Room where you’re hanging around waiting and worrying and not really knowing what’s what.
A couple of responses to things you’ve mentioned in your post. Aches after biopsy - yep, had that. And very pretty colours. Ibuprofen was what my doc suggested to help with the pain and any inflammation.
Don’t feel that you have to be “strong” when posting on this site, as there will be someone else in the same place as you and we all know the devastation you feel when the Cancer Bomb goes off in your life. Feel free to join in on any threads you like the sound of, from the informative ones asking specific questions to the silly ones, to the ranting ones, whatever takes your fancy. The resource pack mentioned by Louise BCC is very good too.
Try not to go mad googling, there are a lot of sites that have misleading, out-of-date, inappropriate and downright dangerous “information”, so if you want to do research, stick to the reputable sites such as this one, Macmillan, Cancer Research, Breakthrough, and so on.
And be kind to yourself. If you’re like lots of people on here you will be worrying about everyone else and not thinking about yourself, but the best way to be good to others is to look after yourself so you’re stronger for them.
Have a hug too, hugs are always good.
CM
x
hey hunny
sorry you have to join us all, but i can personally say this site has been my life line through the last 6 months.
take it all one step at a time, talk when u need and cry when u need. laff when u can. and try and stay calm. xxx
it seems to be all in slow motion and the waiting is far the worse time. when u start getting info and dates and treatment plans youll feel like your doing something about it all.
xxx good luck and always here if u need anything. xx
Hi Dancer, sorry you’re here, but you will find some very good company. Having younger kids makes it emotionally tougher for you, but as others have said this is the place where you don’t have to be strong or brave.
I think that reconstruction is usually delayed until after radiotherapy to avoid any damage to the reconstruction. (I’ve only had 2 lumpectomies and lymph nodes removed, so I’m repeating what other people say.)
It’s normal to have pain after the biopsies, but they don’t spread the cancer, so don’t worry about that. If anything is near a nerve, sometimes the nerve itself sends pain messages.
Grade 1 is an early stage and the cells haven’t started to change much. Grade 2 means more of the cells have changed, but neither of these mean that it is spreading. The stage is what tells you whether the cancer is spreading or not. In stage 1, it isn’t spreading beyond the original tumour. A wait of a month suggests that yours is still at an earlier stage–but this should be in your report.
Don’t hesitate to phone your breast care nurse and ask for more details or an explanation of the details. That’s partly what they are there for and it’s much better to ask than to worry more than you need to.
Good luck to you.
Cheryl
Hello Dancer
So sorry you have had to join this club but the warmest of welcomes to you.
I can only reiterate what the others have said and particularly the comment made by CM regarding “googling”. The information on the reputatable sites is the place to look otherwise you are likely to scare yourself with information that is misleading and at times incorrect or out date. Post here no matter what the question is or how down you are. We have all been where you are today and are at all different stages of the treatment.
I am meeting Oncologist on Tuesday to get the start date for my journey down the chemo road so am a bit further on, lumpectomy was 2 weeks ago for a 30mm Grade 3 IDC aggressive cancer. You will find in time it becomes bearable but I have yet to feel I have totally got my head around the fact I have cancer so do not go beating yourself up for feeling the rollercoaster of emotions connected to this disease.
We are all here for you, you are never alone.
Love and hugs
Tracy xxx
hi dancer,
there isnt much to add to the advice yiuve already had. you are in the worst bit which the waiting but once your treatment starts youll feel better. i got some sleeping pills to help me through this bit. i was careful with them and didnt take them every night but they did provide some blessed relief from my constant thinking and fretting.
this forum and the people on it have helped me a lot, keep posting and good luck. x
Posted on behalf of dancer1
Thanks alot everyone for your advice, it really is good to chat with people who really do understand how /i feel. Yep, I’ve already trailed through the web and have found some of it pretty disturbing, so was glad to see this one. Thanks for the advice on where to get good information, will definitely use it. As for sleeping, i’m waking up sometimes in the night and finding it hard to get back to sleep, keep thinking a million things, will see how it goes.
It’s good to hear I don’t have to pretend or be strong if I don’t feel like it, find myself having the silent sob so my family don’t see it, but overall have let it out too.
Good to hear the throbbing and soreness in my arms etc is normal, thanks.
Posted on behald of ChoccieMuffin
Hi Dancer
If you click “Post Comment” at the bottom of a thread that you want to respond to, the response stays with the thread. If you start a new one it gets a bit confusing. I suggest you copy your reply and post it as a comment to the bottom of your other thread, and maybe send a PM to the moderators and ask them to close this thread once you’ve done that, so you don’t get confused. The mods are very sympathetic to neanderthal abilities with PCs, they see it from lots of us. (I once posted a comment and then reported myself! D’oh!)
CM
Hi Dancer,
Firstly sending you lots of love. I had bilateral mx almost 6 weeks ago (similar circumstances to you, only I was lucky enough not to have invasive cancer so I don’t need any further treatment at this stage). I wanted a recon to start with, but have changed my mind now. It’s so difficult to make the kind of decisions you’re making while you’re going through the bombshell stage. Once things have actually happened you’ll find you can start to think more easily about everything because the panic’s off.
I’m a bit of a control person, I like to deal with things and sort them out. I quickly discovered that’s not a good way to be all the time. It’s hard to do, but go with what’s happening, try to stay informed (but don’t overdo it till you’re a bit further through the maze) and try not to plan ahead. Once you’ve been through the surgery and finished your treatment you can start thinking more seriously about the recon - whether you want it, and what type. There’s no rush, and it needs to be a calm and informed decision.
We have a little gang who’ve been going through mx, one of us had the op on friday. Some have started the recon having had chemo prior to surgery. This is the link to the thread, please join in if you’d like to.
breastcancercare.org.uk/forum/anyone-about-to-have-a-mx–t30219.html
Hugs, Lynne xx
This is my first post as well. Was feeling very down this morning which is what brought me to this site. Have to say, I already feel a bit less alone. Can empathise with so much I’ve read so far - particularly about the ‘waiting game’. My own story has been a bit of a saga and I got knocked sideways last Friday when the final piece in the ‘results jigsaw’ raised the game in my treatment plan. (I’m now a definite for chemotherapy/radiotherapy). Had left side mastectomy with immediate reconstruction (done privately because of the NHS wait). Small tumour - 1.6cm - but extensive microcalcification. Hence mastectomy. Sentinal lymph node biopsy found trace in 1 out of 3 so everyone thought full clearance would not find too many more. However, total is 5, as found out on Friday. This overwhelmed me, partly because of the now definite requirement for more treatment (up to 3 positive nodes I may have got away with just hormone therapy in my NHS oncology department) but also because of the shift in prognosis. Although, my surgeon says still ‘highly treatable’ and still classed a ‘early stage’, which was reassuring. Interestingly, he never ruled out immediate reconstruction - even given the possibility of radiotherapy at the outset. He says that the effects can be mitigated if necessary but then he is an expert in his field and I was a private patient. I understand it is not the norm in the NHS to do this if there is even a remote chance of radiotherapy. So, it’s back to the oncologist to discuss the 'how and ‘when’ and I’m frankly stressed out. I embarked on this very positively and expected chemo from the outset but it seems a bit cruel after having my hopes raised to be back to squ’are one. I’m trying to be positive and I’m going to put everything into this, including a radical lifestyle overhaul, but I’m very weepy for the first time and feel I’ve lost a bit of my original fight. My husband’s a wonderful person and very supportive but I’m keeping the ‘lid on it’ because I actually feel more sorry for him than myself! He’s out at the moment so I’m on the laptop he’s threatened to confiscate because of my near addiction to research, which I’m trying to give up as my brain hurts! I just want to come through this and will be grateful for any help and advice. I promise to reciprocate as much as I can.
LadyWriter, here, catch, have a few hugs, sounds like you need it. Cooking barbecue for assorted sprogs at the mo but will pop back later to give more than just hugs. This site is great, and probably much better for you than researching on google, but even more addictive!
CM
x
Hi Ladywriter
I know how things can change quickly, but at least now you have all your results and you can get on with it so to speak and no more suprises!
I also had microcalcifications and had MX with immediate recon(I’m not a private patient) and now am going for RADS - you are right they don’t really like to do RADS after recon but I was given the option to have them or not last week as after results of MX I’m a bordeline case for RADs! I’ve decided to go ahead. My surgeon recommended that I didn’t, but onc/ radiologist said implant should be ok. I decided that I wanted to throw everything at this, I’ve done MX/recon/Chemo so may as well add rads to this list. I’m having the usual dose, but over 5 weeks instead of 3 because of the implant.
It’s just a setback. You will find your fight again. Don’t be too hard on yourself. My hubby also banned me from googling as it sent me into complete panic mode. This site is very good for asking for advice and tips and the helpline is excellent - however, there are posts which scare me even now so I don’t tend to read those.
Once you’ve seen your onc and got a plan sorted, you’ll feel better and more in control.
Keep us all posted. All the very best
Rachelx
Hello Ladywriter
Try not to be too hard on yourself, and whilst I understand tying to ‘keep a lid on it’ I also feel that trying to talk honestly and openly with your husband is a good and positive thing to do. He is better equiped to help and understand and support in all ways if he knows exactly what is happening and more importantly how you are feeling.
We are all here for you and will offer as much or as little support as you require. We can and will be your strength just ask and its yours.
Keep us up to date as much as you can.
Lots of love and hugs
Tracy xxxxxxxxxxx
Back again, after burning the sausages to the right shade of black!
Ladywriter, a lot of us know the “knocked back” feeling, as more information comes in things get more accurate and we discover that things aren’t quite as rosy as we first thought. I was told initially Grade 2, small lump, so would be small surgery followed by radiotherapy followed by hormones, all done and dusted. But when path report came back after lump was removed it turned out to be Grade 3 so more aggressive and also HER2+ so chemo for definite. Plus all the other stuff too.
Find yourself a few comfortable threads with people around the same stage of treatment as yourself, introduced yourself and join in. There are other threads which ask specific questions, threads based around when chemo starts, and the more light-hearted threads that acknowledge that we are people first and foremost, who just happen to have a cancer diagnosis and treatment to deal with. So dip into those threads as well, they may help you feel a lot more human. And you’ll discover a healthy amount of black humour too, which is how a lot of us get through this mess.
And if you have a question, ask it. THERE IS NO SUCH THING AS A SILLY QUESTION. If it’s something you’re wondering about, it’s worthy of being asked, and one of us has probably already asked it before you! If the posters on here can’t answer, try the helpline. It’s staffed by very knowledgeable and understanding people who are there expressly to help you through this, so use them whenever you need to.
CM
x
I followed ‘he who must be obeyed’s’ orders for the rest of yesterday and stayed off the laptop, so was overwhelmed this morning to find 3 of you have responded. Bless you all, I feel a bit better already. The advice and input from each of you is very helpful. He and I had a good heart to heart which has helped. We agreed that this has been like a game of Snakes & Ladders and last Friday we hit a b****y big snake! (Which one of you said humour helps!!!??) I’ve refelected on the positives a bit more - I did actually get some results along the way that were a little better than we thought at the beginning: tumour slightly smaller and grade 2 not 3. Eventually I came out as HER neg which was another reason I thought I might dodge chemo but this was another big part of the saga - the original histology report said borderline so I had to have something called a FISH(?) test to get a definitive. This had to go to a specialist centre and seemed to take ages to come back. Anyway, have decided that this may all be for the best, if I’d had 3 or fewer positive nodes, my NHS Trust wouldn’t have recommended chemo or radiotherapy and there would have been nagging doubts so I’m telling myself that because of a trace in ‘only’ 2 more, I’m going to get the ‘belt and braces’ approach. It’s therefore of interest and very helpful that one of you has actively chosen radiotherapy when you might not have and this makes me think ‘yes, why not? chuck the lot at it’. Thank you. I think you’re also right that I’ll be OK when I get started on the treatment - I’m a bit of an activist and my usual approach to everything is ‘sleeves rolled up; get stuck in’. Will be interesting to swap notes with the other lady who’s had an implant reconstruction about the effects of radiotherapy? My surgeon says it can be quite easily remedied with a bit of tweaking. I send each of you all my love and hugs back. I really can’t explain how much this helps. Hope we all keep in touch. Off now to have fluid build up near node clearance scar aspirated - deep joy but just a tiny snake this one!! P.S. Anyone live Midlands of north, by any chance? xxx
Hi
i am on my 5th chemo of 6 then mastectomy with immediate recon followed by rads. I asked for this order as i felt i would cope more. i also brought up rads as i don’t ever want to feel i only did ‘half a job’.
the whole thing is such a whirlwind at the beginning it’s difficult to get your own head around it, particularly when the info keeps changing but as been said before: once you get started it feels better.
best of luck - i live in midlands.