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Really scared of bury st edmunds

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Re: Really scared of bury st edmunds

Hi Rachel,

I was dx June 07 and had chemo before my op last Dec. I too wanted to get it out and op first but with hindsight, I much preferred chemo first as I had a good response and I could see / feel that it was working. My lump was 2.6 cms and by the time of my op, there was basically nothing left apart from a few random cells. It does also mean that you can have the chemo in both arms and so your veins won't suffer as much (this won't make sense to you at present so don't worry, you will soon get used to the language!!)

As I said, I felt exactly the same and couldn't understand why they didn't want to operate first but this way, they can gauge how you are responding and this gave me confidence that any stray cells were being zapped! I was also told that this was very common with younger ladies (I was only 33 when dx - are you similar?)

Don't worry chemo is doable, yes it wasn't exactly a walk in the park but to me anything that fought cancer was more important!

By the way, where are you being treated?

Take care and go with a list of questions - you can do it

M

Member

Re: Really scared of bury st edmunds

thanks liz doc said it was normal but he just seemed so matter of fact about it i wasn't sure he was really listening to me. hopefully i will get over this .

Member

Re: Really scared of bury st edmunds

Hi Kittyw,

In Jan I had a mastectomy including an area of tissue almost to my collar bone and removal of all lymph glands on that side. I still have a numb area nearer my underarm and down the back of that arm as they had to cut some nerves. I gather this is perfectly normal and think it has got a bit better over the months although it will never be back to normal. It did feel odd at first but I'm used to it.

I was concerned about the op area but was allowed a shower the day after the op & was fine about looking at the scar (surgeon did a fab job) even though I am usually SO squeemish I can't watch Casualty etc on TV ! Perhaps look at it as having got rid of the cancer.

Liz

Member

Re: Really scared of bury st edmunds

hi im new to this site and like rachael i am terrified i had diagnosis on 19/11/08 and surgury on 9/12/08 still awaiting results from this. i had lump removed and clearance of lypmh nodes. can anyone advise me how to cope with the absolute horror of looking at or touching area around operation site . I am completely numb and can not feel any thing but i am afraid to touch or wash area. Will the numbness wear off? My consultant seems very matter of fact about this but it is really freaking me out.

Member

Re: Really scared of bury st edmunds

Hi Rachel,

I have only just seen this thread but wanted to say I had the chemo first, then surgery & then rads. Once you've had the diagnosis, I think you just want to get on with the treatment so it's the waiting that's worst. I was diagnosed in July 07 and had chemo til Dec 07 . The chemo did shrink the tumour by more than half and the docs were v pleased with the results but because of the size, type & location of it, they had to do a mastectomy in Jan rather than anything less to be on the safe side. Personally (and it is only personally) I preferred this anyway.

If you can write your questions down and take them with you on Monday that will help & things will occur to you as you go along - I still have questions now 18 months on (I'm still off work but hey that's another story !). I hope you find your oncology dept as lovely as mine have been. The oncologist is great and really down to earth and I feel I can ask her anything. The nurse who works with her is just at the end of the phone even now and the nurses giving the chemo were fab. The same goes for all those on the breast care unit we have here again from the surgeon to the nurses etc. I never once felt frightened.

Good luck with your appointment (I've got one at the oncologist's on Thurs & the surgeon's on Fri for check ups so it's one of those weeks !) and the chemo.

Liz

Member

Re: Really scared of bury st edmunds

Hi Oportogirl.

Shattered and shocked is how I felt at diagnosis...I'm so sorry that you've had to join this club.

There are two reasons for having chemotherapy before surgery:

1. to try to shrink the tumour so that a wide local exzcision (WLE or lumpectomy) might be possible rather than a mastectomy.
2. to goive the oncologist (and therefore you) some idea about the aggressiveness of the tumour and whether it is responsive to chemotherapy. If the tumour doesnt shrink then you can be switched to a different drug.

I had chemotherpay before surgery which didn't work particularly well so I still had a mastectomy then also had chemotherapy after surgery.

I know other women who have had excellent results with cehmo before surgery with the lump almost disappearing.

I was told that survival rates for pre surgery and after surgery chemo were the same...this was 5 years ago though and these days it is commoner than it was then to have pre surgery chmeo.

Try to talk to your oncologist or someone else in the team...breast care nurse for example..about your concerns.

very best wishes

Jane

Member

Re: Really scared of bury st edmunds

Hi Rachel!

Of course you can question what the doctors say to you and you can do whatever you would like. It is "fashionable" now to try and shrink the lump first and then have surgery. In some cases the first chemo doesn't work and then the doctors try something else. A friend of mine after 6 months on 3 different chemos had very little shrinkage and ended up having a mastectomy anyway! In the past women were always given mastectomies but now they do try to conserve the breast if possible. I was lucky and only needed a lumpectomy, but do wonder if I had been given your option whether I wouldn't have just wanted it all taken away immediately. My worry would have been that during the 6 months the tumour was still there and who knows what it was doing. So ask lots of questions and feel able to make your thoughts obvious to the doctors. Best wishes.

Member

Re: Really scared of bury st edmunds

Hi Rachel,

Loo's advice about writing down your questions is good - it is also very helpful, if you can, to take someone else into the appointment with you.

The recommendation for chemotherapy before surgery may be to do with the type of cancer too - I have lobular cancer which tends to be more diffuse than ductal cancer, and I have had chemo first (I also had two tumours on diagnosis, so that was part of the decision too).

It's good you have an appointment on Monday, so should have lots more answers after that. Don't be afraid to ask for more info if you want it, or for them to explain the reasons behind their decisions - this is your cancer, and you have had very little time to get your head around all the implications and the options.

Good luck, and best wishes

Julie
x

Member

Re: Really scared of bury st edmunds

Hi Rachel
Of course you are feeling shocked and upset and I agree with Eileen, the waiting is one of the worse things. My advice is to write down all the questions that you have and try and get someone, maybe your breast care nurse to write down the answers. Also don't be afraid to ask as many questions as you want. I found that there is a whole lot of words that I had never heard before and even words that you hear often like 'chemo and radiotherapy' become so different when they are being used in relation to you.
I dip in and out of these pages and find that even if I am not commenting myself there are usually answers to questions that I have. I would also say though, that you should try not to read too much about other people's cases, concentrate on what is happening to you and take it one step at a time.
Will be thinking of you
Loo

Member

Re: Really scared of bury st edmunds

Hi Eileen and Louise

Thanks for your support. I have my first appt at the Oncology clinic on Monday at 11 am. So hope to know more then. Since my first post here I've been thinking and thinking (as you do!) and have almost convinced myself that I'd rather have surgery and have everything taken away (hopefully). Can you disagree with what you are advised I wonder? And ask to have surgery? I realise it may be a mastectomy as the lump is 2-3cm, but I'm prepared to have that.

I wondered why only 2 people had replied to me as everyone else has loads of replies.

Anyway, more news after 15th.
rachel

Member

Re: Really scared of bury st edmunds

Hi Oportogirl

I am sorry to read of your recent diagnosis. Whilst you wait for the other users to reply with their advice and experiences, you may find BCC's resource pack helpful, it has been designed for those newly diagnosed.

The pack is free of charge as are all our publications. If you would like a copy just follow the link below: http://www.breastcancercare.org.uk//content.php?page_id=7514

If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Kind regards

Louise
Facilitator

Member

Re: Really scared of bury st edmunds

So sorry to hear of your diagnosis. It's a scary time to be sure but I think that once you get a treatment plan you will find it gets easier. Chemotherapy is usually given to shrink the lump. This can mean you will have a lumpectomy instead of a masectomy. The oncologist will explain it to you. I think everyone is shattered and shocked I know I certainly was and went round on auto pilot for a few weeks. Believe me the waiting is the hardest time thinking of you love Eileen

Member

Really scared of bury st edmunds

Hi, I've just been diagnosed with breast cancer 2 days ago; absolutely shattered and shocked, as I am sure everyone must be at a time like this. The consultant and the oncologist have advised that the way forward is for chemo and then surgery, but I have so many questions as to why they think that, but have to wait for an appt at the oncology clinic now.

Does anybody have any thoughts on this please.

thank you.