I was diagnosed with breast cancer on Tuesday 22 July - a huge shock. I have been told I have to have a mastectomy, but I didn’t take anything else in about what else the consultant will be doing. I haven’t had any back up and have no idea what I’m meant to take in to hospital with me, or how I’m meant to cope with this afterwards. Who else is out there who’s as terrified and confused as me, someone who might be able to tell me what to do.
Thanks.
Cat
Hi Cat,
poor you, but you are now a member of a very large club!
If you type in “terrified” to the search tab, you will find many others. i am on lucnch and can’t chat too long but there are lots of threads which give lists of useful things to take in with you and advise on how to deal with things. Go to the undergoing treatment surgery bit and see what you can find. I’ll try and come back later with some tips!
The first is…don’t panic. You are still in shock and the world is probably still a bit out of focus. So give yourself a bit of time to adjust and rest assured there are lost of ladies on here to help you.
I didn’t get nearly as much information as I should have, but in a way I think I got as much as I could cope with. One small hurdle at a time is how I did it. I had a mastectomy in June and I am now on chemo (not nearly as bad as I thought it would be).
So bets of luck and Ill try and catch up tonight.
Best wishes
Gillian
Cat,
So sorry to hear about your diagnosis. I know you must be in a complete state of shock at the moment and you just cannot take anything in. Did your consultant give you any more information from the biopsy such as type/grade/size of tumour. What is your treatment plan? Does it involve chemo/radiotherapy? If so, did your consultant mention whether or not it would be possible to have chemo first to see if it will shrink the tumour, so that you might be able to have a lumpectomy instead of a mastectomy. Do you have a breast cancer nurse who can answer your questions. You really need to find out a lot more about your diagnosis before agreeing to have the mastectomy. If you want to have a mastectomy did your consultant mention anything about breast reconstruction or the possibility of having an immediate reconstruction at the same time as the mastectomy. Jacqui
Cat I know how shocking this diagnosis is and how fearful you must be of the actual operation. When I was about to have my op the surgeon saw how frightened I was and assured me that although phsycologically it was terrifying the op itself was straightforward. It was and in fact I went straight home afterwards.
Very often you are given a list of things to take into hospital and many ladies will reply to you with more help.
It is normal not to remember what the consultant has said because it all seems so surreal. Perhaps he mentioned removing lymph nodes to check there is no spread. Normally you are allocated a breast care nurse and she should be willing to go through things with you.
After the operation you have some drains in to remove fluid and this is all quite straightforward.
The actual op will be ok. Many, many of us have started out from where you are frightened and confused but have got through it.
I wish you strength.
Margaret
Hi Cat,
I too was diagnosed on 22/07 - what a shock isn’t it. I had been feeling so helpless and afraid, but you will find by coming on here, everyone is in the same boat and understands. I am waiting to go back next week for MRI results, so still don’t know what surgery/treatment plan is yet. So far the only way I can deal with it is to take one day at a time, try to do something nice each day ( a lot of people on here suggested doing distracting things) it really does help. Also you can talk to someone on the BCC line for more information.
Keep in touch, don’t worry
Love Traceyxxxxxxxxxxx
Hi Cat
Sorry you have to go through is, I really understand how you are feeling. I too was terrified and confused I was diagnosed on July 3rd and had a mastectomy on July 7th. I was told very little apart from that if I had a mastectomy I would need no further treatment. (This was not true as most people need some further treatment even if all cancer is removed just to increase the chances of it not coming back)
I also had no support from the hospital, was supposed to get a breast cancer nurse but still waiting.
As far as taking things into hospital, just the normal toiletries etc. I would recommend taking a bra as a nurse came and fitted me with a comfy - this is a temporary filling for normal bras that can be worn before you get a normal prosthesis.
The surgery is not as bad as it sounds. I will tell you my experience but remember everybody is different.
Surgery at 12.30pm woke up at about 3pm in no pain. A few hours later my arm started hurting, I asked the nurse why and she told me it was because the lymph nodes had been removed (Yes I was told that little that I didn’t know they were going to be removed). I had two drains in for 5 days.
During my stay in hospital I was very relaxed as there seemed to be only a little pain which was manageable. The worst bit was having to sleep on my back.
since then has been the hard part, waiting for the results, (One week), trying to get a mastectomy bra, worrying about what further treatment I will get, going out with only one breast, but I would recommend one step at a time, have your surgery and don’t focus too much on waiting for the results. This is going to be a long journey and where in the beginning I wanted all the answers immediately, I now realise that you have to take one step at a time and only focus on the what you can influence and not on what is out of your control.
Since surgery my arm has been the worst, it’s very stiff, but I find the more physio I do the better it feels for the rest of the day.
I find it hard trying to keep family and friends ‘Normal’, they all now think I am a total invalid.
The support you get from this forum is tremendous, I feel like a beginner with all these knowledgeable people out there, but everybody is so supportive and you can always find the answers here.
I really wish you the best of luck for your surgery and let us know how you are getting on
Deb
Hi cat
Sorry to have to welcome you to our club - it’s not a club anyone actually wants to join but we are a good bunch and support each other very well.
Can I suggest that you contact the hospital and ask to see the breast care nurse - when you are handed your diagnosis and the surgeon then launches into the ‘what happens now’ speech you are sitting there so shocked he may as well be speaking to the man in the moon cos you certainly are not taking in what is being said.
The breast care nurse should also be able to help with a list of items you will need when you go in for your op … there are also threads where ladies have posted about the handy things they took into the hospital. I find the best thing about this site is that the members are able to show the human side of the situation as opposed to the medical side of it … surgeons are not going to come out and tell you that after your operation chocolate buttons are better than a bar of dairy milk cos u don’t have to snap a chunk off to fit it in your mouth, or best not to order a pork chop within a week of your operation and expect to be able to cut it up yourself, or that a panty liner makes a super dressing if you run out of official dressings on a Sunday evening and the chemist and surgery are closed.
The other thing is to focus on each individual stage - don’t start reading up about radiotherapy at this stage, it may or may not be required but if it is then it could be weeks or months down the line … get to grips with the surgery and then see what they say is the next step and deal with that.
Remember too that there is no such thing as a silly question on this site - whatever you need to know someone is bound to have an answer.
Good luck and keep in touch.
Hi
Sorry to hear you have joined the gang - you will find lots of love and support on this site. I know it has helped me through a few dodgey moments.
As suggested look on the undergoing surgery threads, you may find info there but do be aware that people often post when they have problems, this doesn’t mean that you will. As others have said the surgery is pretty straight forward - goodness knows they seem to be getting enough practice. It maybe worth contacting the Breast Care Nurse at your hospital for more advice, and maybe seeing if you can talk about your diagnosis a bit more. You may be able to have a lumpectomy instead. If possible take someone with you so that they can help you go over what is said. It is difficult to remember detail if you are under stress.
Lilac blushes it quite right - please please just focus on one step at a time - it was the best advice I had. It is not worth getting anxious about chemo etc. before you know you need it.
Try phoning the helpline if you need someone to talk to now - they are really knowledgeable. Also try the publication list - you can get a good booklet full of information
Goodluck - Jacqui
Hi Cat
So sorry you have joined us.
I agree with lilacblushes take it one step at a time.
I had Mastectomy on 15th July and will get my results on Friday although already know I will have to have chemo as hormone negative and i am having reconstruction next year when every thing is hopefully on the up again.
My bcn is so very helpful so I hope you can get in touch with yours.
One thing I would say is take pyjamas as it is so easy to lift the top up an I found it easier to cope with the drains ( one lady wore a nightie for first night and she found it very difficult
Please take care of yourself and try not to worry as you are no longer alone
best wishes
Liz
Just to come in on the back of Jacqui’s comment about other ppl’s problems … the best advice I have had since dx came from a friend who’s daughter had had leukemia as a young child … he words were ‘don’t listen to everyone else’s horror story and apply it to yourself… listen to their problem, sympathise and empathise but don’t immediately think that the same will happen to you’
Hi Cat
Breast Cancer Care have written a ‘Resources Pack’ for anyone newly diagnosed with breast cancer which you may find helpful to read, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. You can order a free copy from the following link or you can ask for a copy to be sent to you via the helpline.
breastcancercare.org.uk//content.php?page_id=7514
There is information in the pack about our other support services, including our helpline, tel no 0808 800 6000 which you may find useful to use at some point if you need to talk anything through or just need someone to lend an understanding ear. Alternatively if you prefer you can use email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
I hope this is of some help to you.
Best wishes
Lucy
Hi Cat
Thinking of you - listen to all that good advice
Tuesday xxx
Hi Cat
Sorry you have joined the club.
i found the “Resource Pack” very useful as it gives you space to write down questions you want to ask - and suggests questions as well!
As I have posted on another thread, think of your treatment as an elephant - best eaten slowly and one bite at a time! My friend gave me a small toy elephant about 5 inches high and he went into hospital with me on monday for my wide local excision and node removal!
I saw the BC nurse as soon as I had been given my diagnosis by the consultant (she was in the room when I was told so knew exactly what had been said) , again on monday when I went in and on Tuesday morning before I was discharged and found them very helpful.
All the best
Angela
Hi Cat, so sorry you have had to join us. I too have found my bcn absolutely wonderful. She was with me when I was diagnosed, mopped me up afterwards and had helped me make decisions about my surgery without imposing any of her own beliefs. I think that NICE say you ought to have a bcn so do look into it. Also, at my pre-op assessment where also they were so kind, they gave me lists of things to bring in. In another thread it became apparent that you need cotton knickers or they make you wear paper ones!
Also, BCC helpline is great - they will help you with all sorts of information.
Take care, there’s lots of us here to support you.
Love, Maggie xx.
Hi Cat,
Sorry you have had to join us, do you have a partner/sister/mum/daughter/best friend you can take to your appointments? My best advice is get some some Primark front-opening pyjamas, and make sure you have plenty to read when in hospital. Tell the doctor in hospital that you are anxious and he/she will prescribe some sleep medication if you want it.
Breast Cancer care publications and helpline are wonderful. How old are you? (sorry - never ask a lady her age!)
I think the node removal is the worst part, I had a WLE and now need re-excision and possibly mastectomy.
The nicest thing anyone has said to me was the breast care nurse who was there when I had the biopsy - “whatever happens, it’s not the end of the world”
and believe me I am the world’s biggest panicker, pessimist, doom-and-gloomer and wuss, and even I, 5 weeks post-diagnosis, have still a sense of humour. Though look back to my earlier posts and see how terrified I was.
Love and good wishes to you,
Irina
x
Everyone - thank you so much for your kind words advice. Right now you are the people who can truly tell me what to expect because you’re going through it too.
Irina, you asked my age - I’m 42 and have a 2 1/2 year old son. My partner (new husband as of Saturday just gone) has come with me to most appointments and he’s doing his best to manage everything for me.
I’ve always been fit and healthy with a sensible diet and never smoked, still wondering how on earth this has happened to me. I guess everyone asks that question of themselves.
Hi Cat,
I felt much the same as you when I was dx in May. Fit, healthy and felt well. Treatment for me nearly finished.
Go and have a chat with GP. Mine has been very helpful and filled in some of the gaps. Also phone the hospital and ask to speak to a breast care nurse, that way you know if one exsists! Usually the hospital writes to you and you go for a pre-op assesment where everything is explained and you have time to ask questions. Always take someone with you and get them to write replies down, my husband did and this was invaluable.
Good luck
Oh Cat,
You will get through this - I know your head is everywhere at the moment. It does take quite a while to come to terms with everything. I remember when I was diagnosed, I came out of the room and just sat in the reception area in a complete daze - there were loads of people around me, all saying different things, but I just didn’t hear them - a really peculiar sensation. A couple of days later, I had a meeting with my Breast Care Nurse and just sat there completely dumb whilst she told me that my tumour was grade 3, triple negative etc. She then went on to say that I would need chemo and then began talking about buying wigs. I was absolutely horrified. Here I was a 42 year old women, worked full-time with a three year old daughter, fit as a fiddle, constantly on the go and she was talking about me having a life threatening illness, chemo and wigs. She then took me down to see the chemo unit, I didn’t want to go, but made myself even though I was very, very reluctant. I couldn’t go in, just managed to pluck up enough courage to peek through the door. A lady came out and my breast cancer nurse introduced me to her, she said that she recently had a mastectomy and would I like to take a look. Whoooaaahhhhh - much too soon for me - the thought horrified me at the time. That was it for me, I quickly made my excuses, picked up by bag and basically run out of there as fast as I could. I spent the next couple of days sitting at home in a complete daze trying to get my head around things. Slowing, but surely things do sink in, you find the strength from somewhere. For me having a young daughter gave me the strength I needed, the will to live and to see her grow up took over. At night, I would curl up like a wounded animal at the thought of leaving her, but by day I thought right - let’s get on and get this bloody thing out of my body, I have a life to live, I want to be around to see my daughter grow into a young women, be there to support, encourage, nurture, but most of all to LOVE her as only a mother can and breast cancer certainly wasn’t going to stop me from doing that NO BLOODY WAY - it didn’t deserve it - who was it to come along and invade my family life. Me, my husband and my daughter were perfectly happy - enjoying just being together and never asked for anything more than that.
When I was first diagnosed the treatment plan seemed like an eternity 6 months of chemo, surgery and then radiotherapy - nearly a whole year of treatment, but you just take it one step at a time - you count down the chemo, get through each stage and eventually come out the other end to hopefully live a LONG and happy life. I am now 3 months post chemo/2 months post surgery. I had chemo first to shrink the tumour and although it did shrink initially, unfortunately it wasn’t enough to have a lumpectomy. When they first talked about having to have a mastectomy I was absolutely horrified, but realised that was what my surgeon recommended and I slowly, but surely managed to get my head around it. I had a mastectomy plus immediate reconstruction (expander implant). My surgeon glued the scar together, so it is just a small thin line. I am just waiting to get pumped up so to speak - my surgeon will fill the implant (over time) with a saline solution to match my good breast. It was just so nice to wake up from the operation and because of the implant had something resembling a breast - although it still needs pumping up - I don’t want Jordan proportions, just a 34c will do lol. Best wishes Jacqui xx
n
Cat,
all my friends have said “but how could this happen to you, you have the healthiest lifestyle of all of us!” and I did. And you have too and continuing it is will get you through this. The natural reaction is to think “what have I done wrong?” because that’s what women do, but you didn’t bring this on yourself - it’s random.
The good news is too, a positive attitude or “the will to live” won’t influence your prognosis. So you can despair as much as you need to and it won’t make you more ill. That said, something in we humans always pushes us out of despair, whether we like it or not. Resilience - that’s the word I was looking for. You are still in the shock stage (as I still am - I woke up this morning and thought, “oh my God, I’ve got cancer!”) but you will be able to get through this.
I am 36 and a single parent to a 9 year old daughter, so I know the terror of “what happens if …” but as we keep being told, BC treatment is very good these days and someone said on a different thread that the medical fraternity have learned more about BC in the last 3 years than they did in the previous 25.
Oh and it’s natural to want to smack someone when they say “you’ve got to stay strong, for the SAKE OF YOUR CHILD” - like you wouldn’t have thought of your child had it not been for their intervention!
So I won’t say stay strong, or stay positive - just that surgery is not that bad (I’m including my knee operation, emergency Caesarean, WLE and axillary clearance in this) and at least you get a chance to lie down and have people bring you toast. And when you have a two and a half year old that can’t happen that often!
Good wishes
Irina
x