panic stricken and upset

[Guest user]

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

[mimsy]

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

[sheil]

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]

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

[mimsy]

I`m 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! I`m 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".

[Kitcat]

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

[Kitcat]

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

[sheil]

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

[Jo_BCC]

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

[Kitcat]

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

[impatiens]

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

[Kitcat]

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

[Guest user]

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

[Kitcat]

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

[mimsy]

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. I`m 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 who`d been through it which gave me hope. I`ve 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! You`ve 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

[Janet_BCC]

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

[ChoccieMuffin]

Kitkat , give the helplne a ring tomorrow and see if they can giveyou some suggestions. They know what they're talking about.

Good luck.

cm
x

[Kitcat]

Hi Everyone,
Emma, first I hope you got some good news from your results today and that anyone else who is waiting to start treatment or already underway with it is doing OK. Thanks also to everyone for their good wishes, which I really appreciate.

Unfortunately, I didn't have a cyst, the radiologist has taken a total of six biopsies, three from the lump and three from one of the lymph nodes which she said was swollen. I've now got to wait until next Friday for the results.

I was upset but there was no chance to discuss anything back in the clinic as the radiologist said I didn't need to go back in, I was just given a card to make another appointment for the clinic to get the results next week. I left the hospital in a terrible state, crying my eyes out in public. I felt completely unsupported.

It would have helped me if I had been able to discuss things further, not least the HRT because before I went downstairs for the tests I said to the doctor in the consultation that I was thinking of giving up HRT and he simply said "good idea". There was no discussion about how best to do this, whether I could taper it off, take any herbal remedies to help with the symptoms or anything. I was also expecting to go back into the clinic to discuss these things after the tests but that didn't happen.

I think I will try to contact the clinic nurses next week or perhaps email them. I haven't been told anything about any treatment plan, I've been left up in the air and presume this will all unfold next Friday. In the meantime, all I can do is use my imagination as to what all this means.

Anyway, most of the day I have felt very upbeat and ready to take on treatment but I've just hit a bit of a low point.
xxx

[mimsy]

Kitcat and EmsyLou79,
I`m five hours behind, living in another country, but just wanted to wish both of you the best for today,
Love,
Mimsy

[Guest user]

Hi Kitcat,
I thought I would post a quick message to you, I am waiting and get my results tomorrow too. Here's fingers crossed for both of us! I'm a gibbering wreck today too but think I need to tale up the wine advice as nothing else is working, Lots of love & luck to you.

Emma :0)x

[Guest user]

Hi Kicat
It's a dreadful time you're going through at the moment. It's the worst possible time. Your head is all over the place....thinking all sorts of negative outcomes. And Christmas doesn't help.

It's also hard when you receive the 'bad' news (if you do) but then you just 'get on with it'! Not looking forward but taking each day as it comes.

Three years ago I was just finishing chemo. It was my daughter's wedding and I thought that I wouldn't be here much longer.

Here I am over three years later, feeling great.

Even if you get the worst news, although it's scary, it's not the end of the world.

Words of wisdom - don't scare yourself silly googling, take a day at a time and just enjoy life when you can.

Like you, I loved my job, and returned to it whenever I could. It kept me sane. Through Chemo I still went to work but on reduced hours. I was lucky and went in when I felt fit. It worked out that as my chemo went on I hit a 'brick wall' about 1pm and had to go home to nap and they understood.

When I was waiting for my results, besides working, I took the time to cook........... I filled up the freezer with lasagne and other dishes which were 'oven-ready'. It gave me something to do and also helped when I couldn't be bothered cooking. I can recommend it.

Good luck. Let us know how you go on.
Marilyn

[mimsy]

Kitcat,
You have every right to feel the way you do. As others have said, when you know what you`re dealing with you will feel more in control.Just for now, try not to let your thoughts run away with you, because thoughts arent reality, and they can lead you a merry dance. Dont feel bad about not letting people know until you know whats going on, thats what I did.
I took HRT for seven years before I was diagnosed, but had come off it a year before that. We`ll never know whether that contributed, but in my case I suspect my "little problem" had been there for a long time!
In the meantime, before you get your results I recommend a glass of wine or two to help you sleep. Nothing you do or dont do now is really going to affect the outcome.
You`ve done well to go back to work when feeling so worried. You`ve obviously got lots of inner resilience. Good luck for the results. Sorry its this time of year. I went through it all this time three years ago, and nobody wants this hanging over Christmas.
Keep us posted about what happens,
Big hug,
Love,
Mimsy

[Kitcat]

Thanks so much to everyone who has taken the trouble to reply, your support is so valuable to me and has helped me to get things in perspective.

I've been at work this morning and found it a real help. My colleagues know what's going on and have been really supportive, I think maybe I need to keep busy, I find the evenings very hard going at the moment, too many empty hours to fill.

Also I didn't know about herbal remedies affecting anaesthetics so that's good advice too. If I get bad news on Friday I'll have to ask them to prescribe me something to help with the anxiety. I've found lavender oil on the pillow has helped me to get to sleep and I had a better night's sleep last night than the one before.

Once again, I'm so grateful and also thinking of everyone who is undergoing their own really tough time but who has taken the trouble to make such good suggestions.
Kitcat
x

[RevCat]

Hi Kitkat,
so sorry you are having all this anxiety just now. As Choccie (aka CM) says, you are NOT a wimp, so repeat that after me ten times "I AM NOT A WIMP".

Elttiks is right about herbals, but what to suggest instead... calming music, meditation, camomile tea (different kind of herbal!), long walks, even longer soaks in the tub... If you are really struggling, ask you GP or onc for help when you see them - I had a week's sleeping pills (low dose) right at the start which meant I got some sleep. After that I was much better.

You will get through this, just be very gentle with yourself.

[Guest user]

Leave off the herbal remedies. If perhaps you did have a bc dx, they can cause terrible problems with aneasthetics and treatments.

[ChoccieMuffin]

Kitkat

YOU ARE NOT A WIMP. Everyone on here knows the intense terror and we feel for you.

[Guest user]

Hi Kitkat,

I empathise with you! it is terrible this waiting time in the waiting room as we call it on these threads,
I am sure you know your own body when things are different i also knew, which i was able to prepare myself for, i hope you will be ok,
as all lumps arnt BC there is so many things that can go wrong with our breast.

It is hard keeping oneself together, i told family when i was sure of a result, albeit hard upsetting them all before xmas, i am glad of their support at this time.

You will get through it like all us ladies that post on these forums
we all support each other which you will also find very comforting
as we are all on same road together, at different stages of our path

Anxiety is the worse part of any meds, op, we are all different the not knowing waiting 3 weeks for results after every procedure is a nightmare, mine started in august in which time i have had a lot done yep still waiting for med plan in new year.

What i bought to help with anxiety is a CD called MINDLESS, bought it on amazon, for relaxing meditation i found it helped hope it will do same for you the guy on tape who talk you through cd is comforting.
The one i bought is audio as i can watch colours on screen
while listening to audio book.

KK good luck for Friday i am thinking of you keep posting on here to let me know how you are getting on as we fight together sharing our feelings good or bad helping each other through anxious moments.

Take care Pat xx

[katytc]

Hi Kitkat,

I really feel for you it is a terrible time and the fear of the unknown is so scary. When you go on Fri you will know exactly what you are dealing with and the news still maybe good, so take care and lots of hugs to you, keep posting xx

[Sam_BCC]

Hi Kitcat

I know that you have already called the helpline and found it helpful but please do feel free to give them another call if you need some additional support whilst you are waiting for your results. The lines will be open again tomorrow from 9 to 5pm and every day until Saturday and the number is 0808 800 6000.

Best wishes Sam, BCC Facilitator

[Guest user]

Hi kitkat,

I'm new to this forum, but I wanted to reach out to you and let you know that I'm thinking of you. Waiting can be absolutely brutal. Keep a list of everything you've been thinking. Writing your thoughts down can keep them from taking over your brain.

[Kitcat]

Thanks so much for your post Alison, unfortunately I am in a terrible state, panic stricken and so stressed I can hardly function. I have to work tomorrow too.

I got through Christmas, that's all I can say about it, although it was a real struggle to keep it from my children who came to visit. My husband and I have decided we won't say anything until after I have been to hospital on Friday.

I have had two previous lumps checked out and have never felt this level of distress, stress and terror and I know it is because I can see this time the lump is different and also because of the doctor's comments. I wish she hadn't said anything, she has made the situation ten times worse.

If you have any ideas how to cope with this extreme stress I'd love to know. I am self medicating with Kalms, St John's Wort, Tisserand aromatherapy and Bach rescue remedy. Unfortunately, none of them are working.

I'm now so terrified that I'm not even sure I'll be able to go to hospital on Friday, and neither do I think I can face treatment.

Sorry to be such a wimp, tonight has been the worst time so far, I am panic stricken.
Kitcat
xxx

[impatiens]

Hi kitkat,

How are you? How was your Christmas? Did you manage to enjoy it at all?

Don't worry about your boss, what I've come to realise is that although we all know that people deal with these things in their own way, a lot of the response you get is an attempt to normalise your illness, they want it to ne ok for you and so try to act as if it's not s big deal. Of course it IS a big deal but some people can't really cope with it and it's not from a lack of concern, almost the opposite really.

When you've got the results you'll feel a lot better, no matter what the results weirdly! You could write a list of things you'd like to know about, like the Hrt , and don't be afraid to ask anything you like, that's what they're there for.

Much love

Alison

[Kitcat]

Thanks so much Alison, your reply means a lot to me, I am trying to stay calm and not get upset. Also thanks to Sam, I phoned the helpline yesterday morning and had a very helpful half hour chat which really did help.

I was rather disappointed with the response I got at work. I'm on holiday this week and filled our overall boss in by email with the fact I had these tests next week and I asked him to tell the department head but I didn't get a very sympathetic response from the dept head. He just emailed to say said he'd been told the news, hoped it would work out for me and he would see me next week.

I am going back to work before I have the tests but I'm feeling extreme stress at the moment to the extent that I don't know whether I will be able to cope.

I'm also trying to cut down on my HRT but again I'm not sure if I should even be thinking of that when I have so much else to deal with. Maybe I should wait until I've had the tests.
Kitty

[impatiens]

HI Kitkat,

I'm so sorry you've found yourself on this forum. Whatever happens you'll find lots of wonderful women on here who'll support and advise you. I think we've all found this place has saved our sanity on many occasions.

You're at the worst stage now, because you don't know what's going on. Everyone will tell you that waiting for results sucks. It's really scary and you think the worst. As you say, most lumps turn out to be benign and I hope that yours does.

If it doesn't then you'll be given a treatment plan more or less immediately and believe it or not, you'll find that you feel better. Not immediately! Shock and tears are totally normal, but you at least know what the plan is and you can start to inform yourself and get ready for what's to come. The main thing to keep in mind that it's not as bad as it first seems to be. It's all doable and you'll be able to get through it. The other thing to bear in mind is that this is not your fault. I too had a lump for a very long time before I was diagnosed and although I eat fairly healthily and don't smoke I probably do drink too much and this may have contributed to it..but who knows? If you look on this forum you'll find lots of women who have done all the right things, eat well, don't drink, don't smoke, aren't on HRT and have no family history of cancer - and they still get breast cancer.

I was diagnosed five weeks before I got married and kept it from everyone other than a handful of people. Even my parents didn't know until after the wedding. Like you I didn't want to ruin what was supposed to be a happy occasion. What I really didn't want was lots of people coming up to me with their head on one side and asking if I was alright... And we got through it and actually had a wonderful day.

The treatment now is so good, and so many women survive this, and at least you've caught it now and can begin to get rid of it. It's normal to be devastated, to cry and to wonder how on earth you're going to deal with what's to come. But you will do it and you'll find reserves of strength you didn't know you had.

I wish you the very best and hope very much that you've got nothing to worry about.

Much love

ALison

[Sam_BCC]

Hi Kitcat

I’m sorry to read that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes Sam, BCC Facilitator

[Kitcat]

I went to the doctor yesterday because I have a large lump in my left breast. I wasn't unduly worried as twice before I've had lumps which have been cysts but unfortunately the doctor has pointed out that my nipple is distorted and she doesn't think this is a cyst.

I was very upset yesterday because I've had this for a couple of months but done nothing because I thought it was a cyst and the next two weeks until I get the tests (December 30) are going to seem very long. My husband is being marvellous about it but I feel very alone and I am desperate not to let anything slip out to my son and daughter-in-law because I don't want to ruin their Christmas as well as ours.

Unfortunately I am panic stricken and not least because I have been taking HRT for a number of years (Climen) because my hair was falling out due to excess androgens and I am very worried this might have caused the problem.

I feel a bit better after contacting our solicitor to try to get our wills made up to date but if anyone has ideas about how to cope in the next two weeks I'd love to hear from them. I'm on holiday and on my own in the house just sitting here and being upset and worrying.

Although I know that most lumps are benign I do know that the symptoms I have are a pointer to a more serious problem and I can't stop thinking about it and worrying how much worse it will be getting before I get the appointment.
Thanks.