Hi kitkat,
I’m afraid the helpline will not be open now until Tuesday Jan 3rd when it will be open from 9-5.
Very best wishes
Janet
BCC Facilitator
Oooh heck, Kitcat! It sounds like you got left high and dry at a time when you really needed someone to explain it all to you. I just want to say that I think your treatment at this sensitive time of year was, well, not sensitive!
I am sorry about that. If you feel like crumbling its only human. Just wanted to extend some sympathy. Im three years down the road from all the c**p and well remember (it was this time of year)all the appointments and my brain going overtime. One thing that kept me going was my doctor (GP) who just urged "Get the treatment". I did, and am here today to tell the story. Also met others whod been through it which gave me hope. Ive been in the USA for the past five years so was miles from friends but somehow I met people who reassured me that as long as I was following the tried and tested path of treatment I was giving myself the best chance.Same for you! Youve done the first bit (biopsy) which will lead to the next bit. It`s like a road, but you dont walk down it alone. Many others on here are there for you. Still a chance that its good news, but if not this is the best place to be,
Love,
Mimsy
Thanks Mimsy, Janet, CM and everyone who replies to my last post.
I’ve found everything about this website and the forum very supportive and helpful and I will try to phone the helpline again during the week although it isn’t that easy as I am back at work again on Tuesday.
I’ve also found out how to email the clinic nurses so I’ve done that and asked if they can give me some email advice about stopping HRT. I’m very surprised that people are just told to make a further appointment like that without being given the chance to talk anything over with a nurse. I’m not really sure if this is how it is supposed to work.
I don’t want to make a fuss, my queries aren’t that huge, but I do feel they need to know as if this is the norm I won’t be the only person who feels they need a little more input.
KC
Hi kitcat,
I went to my first appointment on the 6th dec and had a mam biop and ultra and then was told its bc but that’s it had to go back a week later for full details. I can tell you that was the worst longest week of my life. My oh was brilliant but we had no idea what we were facing. Since then I had my op on the 28th then if the surgery is sucessful will be chemo and radio. But all depends on the results.
I have had the best care from the nurses and drs but with the NHS there is a lot of waiting and even more so this time of year but they do a wonderful job and we have to wait for the full details and results before they can discuss anything with you.
All I can say is the same as the other lovely ladies, take one day at a time.
I’m 39 and was on the pill but carried on taking it as I didn’t know any different and I was told more on my next appointment and I have stopped taking it. So I would carry on as normal as you will be more informed next week.
Good luck with it all.
Lots of love
Fran xx
Thanks Fran,
I was told that there were changes in the breast tissue and one of the lymph nodes was swollen so I had to deduce for myself that it was probably bc. I also didn’t receive any reassurance from the radiologist at all that it wasn’t or that it might be benign.
Anyway I’m doing OK and hope that I can get on with treatment when I get the results next Friday.
Very impressed that you had the op on the 28th and you are up and about already.
KC
x
H Kitkat,
Thats really horrible that you’ve got to wait another week for more details. That happened to me too as my iniitial tests and results were over the double bank holiday earlier in last year, But they told me they were pretty certain it was cancer even before the results came back. But they actually were great and told me what the likely treatment plan would be , even at that first appointment. Bit of a shock but at least I knew.
I don’t know which hospital you’re being treated at but I thought that most places now allocated you a breast cancer nurse even when they’re not certain but suspect you have. That’s what happened to me anyway, although to be honest I thought my breast cnacr nurse wasn’t very good and asked to not have her any more. But some people have really good ones. It might beworth ringing the hospital on Tuesday and asking if you can speak to the one of the breast cancer nurses there anyway, and asking her any questions you have.
Please don’t feel like a wimp, it’s an awful situation to be in and nobody can take the news they may have cancer, well. Is there anyone you can take along with you to get the results?
It doesn’t sound as if you have very forthcoming staff at the hospital you’re going to , so you may have to push them to give you more information or support next time you go, or take someone along who’d be prepared to do that for you.
Much love
Alison
Thanks Alison. The hospital is in North Yorkshire and now I’ve had time to think about it, the way I was treated was pretty thoughtless.
I don’t think that shoving people out into the main reception area minutes after they have had six biopsies and just telling them to make an appointment for the results a week later when they are crying their eyes out is acceptable. I was in a terrible state. I was really embarassed for myself and my husband, goodness knows what all the other patients thought.
They also make it very hard to know how to contact these breast nurses. There is a phone number but of course over the holiday you can’t get hold of anyone so I had to work out what their email addresses were from the main hospital website and then I’ve emailed them. One is off until January 10 according to the bounce back message.
I’m back at work tomorrow so there is nowhere private for me to have a conversation with them if they do contact me. I’ve asked them to answer my queries by email.
It hasn’t got my relationship with the hospital off to a very good start and I don’t feel I want to make a formal complaint although I think one would be justified. I’m seriously lacking in confidence about the system at the moment.
My husband will be with me again next Friday but I am trying very hard not to upset him any further so I am trying to put a brave face on it.
KC
Hi Kitkat
I know from reading this thread that you have contacted our helpline previously. If you feel you need to talk to someone then please do give them a call again, they’re here to support you through this. The helpline is back to normal opening hours tomorrow, Tuesday being open from 9am - 5pm.
Take care,
Jo, Facilitator
Oh KC I can so imagine how you feel. At one point they did what I think they call a stereotactic biopsy on me, about 9 goes in all, and I have to say that was the lowest point in my life. But I did have quite a nice radiologist to give me the results, with a BC nurse at her side. Like Alison, they had already told me it was almost certainly cancer before any biopsy results which freaked me out as I thought it must be really bad. But as it turned out, it was not great, but not immediately life threatening either. I’m planning on hanging around for dementia to set in.
I had lots of tests and recommendations that I didn’t agree with, and a surgeon whose English was sometimes difficult, and I got into a situation where I did not have a lot of confidence in the system. I really hated this feeling because when you’re in such a vulnerable situation you really want to have a deep trust in your doctors doing the right thing and I was very jealous of the people on here who did seem to have that. I really didn’t want to feel a lack of confidence in the man with the knife basically. But in the end it worked out OK. I also never had any consistent BC nurse, just whoever was on at the time. And the service in our area seems overloaded so never great either, just a lot of voicemail, and I’m in similar situation as you, in an open-plan office with blokes and no privacy, so had to run round looking for an empty office if they did call back.
Have you been designated a surgeon yet, if not, you may still get lucky. I’d ask around anyone who may know of reputations and try to get someone you have confidence in.
But after all this, I’m out the other end of surgery and rads, and just have to take the pills. Going back for first year mammo and check this week and other than that I’m doing quite fine. And hopefully by this time next year you will be able to say the same.
Take care
S
X
Thanks Jo,
I found the helpline very good but unfortunately I am back at work tomorrow and it’s very difficult for me to get any privacy to phone during the hours you are open but I may do so later in the week.
Thanks also to Sheil, Alison and everyone else who is continuing to reply to my posts.
The reassurances everyone is giving are very comforting and I can’t wait to get back for the results and to get a treatment plan.
KC
x
I had a response to my email from the breast care nurse who said it was a shame I hadn’t been told to go back up to the clinic from the X-ray dept as she would have liked to help with my queries. She gave me some helpful initial advice by email and I’ll be seeing her when I go for my results on Friday.
I feel more confident about the hospital now, and hopeful that other people won’t have the same experience.
Doing OK and it’s certainly helpful to keep busy at work.
KC
Im glad you had a better reaction from the nurse, sounds like a mess up, shame it happened to you . Good luck for your results. Hope you get more support from the hospital this time.Something I quickly had to realise is the way they treat it all so matter of factly, they see it every day, whereas for us, our whole life is changed! Im going back to North Yorkshire, although its a big county so may not be the same place you go to.Anyway, just wanted to say “All the best”.
Thanks Mimsy for your good wishes.
Unfortunately I found out today that I have lobular breast cancer and one of the lymph nodes is also affected. None of this surprises me particularly as initially my doctor didn’t think it was a cyst and then the radiologist took biopsies.
I’m having a mastectomy in two weeks and the lymph nodes removed. There is some medication to take afterwards, can’t recall the name of it now, but they won’t decide on radiotherapy and chemotherapy until after the results of the op.
I feel fine about it all, the fear and worry initially was the worst thing, now I have a treatment plan and have talked to the surgeon who gave me as much time as I wanted, and also to the breast care nurse who was lovely (and recommended this site), I feel very positive and hopeful for the future.
I hope over the coming months I’ll be able to help people in the same way that the wonderful people here have supported me over the last three gruelling weeks.
KC
xxx
So sorry Kitcat to hear its definite, but as you now know, there’s nothing like that initial dread. Well, I did throw quite a few wobblies in the first few months, but all in all, once you know what you’re dealing with it gets a bit easier, but still not easy. I wondered if we only have so much worry in us and use most of it up in the first few weeks.
I’ve got lobular and from what I’ve read its quite responsive to the drugs. I think what drug you will be given will depend on your age/menopause status.
So glad you’re feeling better about your team too.
Good luck with all the stuff from now on.
X
S
Kitcat, you sound like a very “centred” person, and I`m glad you feel better now you know whats going to happen. I just wanted to wish you well for the next couple of weeks, and with your op,
Love,
Mimsy
Kitkat, just wanted to say you do sound very grounded, and im sorry it wasnt better news for you.
Ive just found a lump and been referred, so am currently imagining all sorts, as well as worrying about my children 18 months and 9 years old.
I hope everything is going well, for you and that your still feeling ok about things.
My mum had breast cancer last year, and usually a BIG worrier. When she was diagnosed she took it all in her stride, and it really surprised me at the time… just goes to show how strong we women are 
x