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Diagnosed on Monday

24 REPLIES 24
Philidel
Member

Re: Diagnosed on Monday

Hi Marble

What a pain to have to go back for more to be removed! And another wait too.

My surgeon talked through the results with me, drawing a diagram on the back of the path report. I wished I asked for a photocopy of the report, which I believe you're entitled to do. I may do that the next time I go back.

marble1966
Member

Re: Diagnosed on Monday

hi philidel,

i had same procedure as you on 18/02 this year. results came back
with one of the margins unclear, so back in for day surgery last
thursday and now another 2 week wait for the results of the further
tissue removal.

what i wanted to ask you was, when did they give you the path report, or did you have to ask them for it. Havn't had mine yet, have just been told that it was a grade 3 and inv breast cancer, and lump size 1/2" and am due to have chemo, rads and hormone treatment once the all clear has been given following surgery.

thank you

CaroleD
Member

Re: Diagnosed on Monday

If you're doing chemo too the onc just goes over the drugs you'll be getting, the side effects to expect, how it's delivered, how long that will take, and gives you time to ask any questions. The BC nurse was there for mine, so between them they answered pretty much everything. Depending on what you're getting, they'll also tell you whether you are getting some pre-chemo scans like a chest x-ray and a heartscan. These are just to make sure everything is working fine before they start the chemo. Nothing to worry about.

Hi Looloo, Hi Philidel. Bit of a rollercoaster ride you're now on, and waiting is the absolutely worst part. All you can do is try and stay as calm as you can and know that you are in good hands. I agree with the others on the NHS. They're great for bc. I've had great treatment, plenty of explanations, plenty of help. I'm almost 9 weeks into 25 of chemo, then I get rad, and then Tamoxifen or whatever they're giving out by that time. 45, WLE and sentinels at Christmas there.

Best of luck, and keep posting. I seriously don't know what I would've done without this forum the past weeks.

salopets
Member

Re: Diagnosed on Monday

Philidel, you can have lipomodelling to fill in the dent. They suck out some fat from somewhere else on your body and inject it into your breast.

When I went for my first onc appointment recently she asked about family history of cancer, whether I was menopausal (I'm not, but probably not far off, so she organised a blood test to see where I'm at), any other medical issues etc. She then went through the tamoxifen treatment and told me about rads. I'm not having chemo, so I imagine it's a bit more involved if you are. Pretty painless really.

LooLoo
Member

Re: Diagnosed on Monday

Thank you Salopets. I know what you say about the waiting makes sense. I try to remind myself that if I didn't shave my armpits I wouldnt have noticed a problem at all - as when my arm is in the air is when I noticed a dimple and its not very visible at all apart from then!!I hope you have a good Sunday x

Philidel - I have sent you a private message.

Best Wishes to all. LooLoo x

Philidel
Member

Re: Diagnosed on Monday

Sandra - I don't have a date for rads yet, but have an appointment with the oncologist on Wednesday morning. Can anyone tell me what happens in that first appointment? Regarding the dent, which I also have, my consultant says that at a later date we can talk about doing some "filling in", so it will be interesting to see what that's about (though not something I feel is a major priority - I'm just relieved to be on the mend!)

LooLoo - I had the choice of Stoke Mandeville or Milton Keynes (or even Oxford if I'd wanted) but opted for MK, which I'm very pleased about. Where are you going?

salopets
Member

Re: Diagnosed on Monday

Hi LooLoo. As the others say, sorry you've joined us, but welcome. You'll find this site a comfort and the source of lots of information. Don't worry about the wait before surgery. I had a 9 week wait between diagnosis and surgery, because I had to have an MRI, another biopsy on a second suspicious area etc. My BC nurse told me that bc generally grows quite slowly. Typically, a tumour has been growing for between 5-7 years before someone feels it.

The waiting is the worst time. Once you know what they are doing and when, you'll feel better and you'll also have something to focus on. And don't worry about other people getting different treatment. Apart from different doctors having slightly different ways of dealing with things, everyone's bc is different. Whilst we all go through the same mental turmoil, our diagnosis, age, treatment etc is all different.

Driving is fine on Tamoxifen. I've been taking it for about two weeks now and I'll be on it for the next five years, so it better be ok to drive!!!! Like you, Philidel, I am going to avoid chemo and have my radiotherapy starting in May.

And I'm with the others on the NHS. I was dx on 12 Dec 08 and my treatment has been fantastic. Everyone is so caring and thorough. The only fly in the ointment is that the breast clinic tends to run very late, but this is only because the doctors are giving their patients as much time as they need to ask all the questions they need to ask. Don't feel guilty about ringing the bc nurses, as that's what they are there for and the ones around here are brilliant.

LooLoo
Member

Re: Diagnosed on Monday

Thanks to you all. I replied yesterday twice but I think I took so long typing that it disappeared in total. I won't type as much today and hopefully I will be quick enough.
You are all very kind and reassuring. I feel like I've had this a lifetime and its been less than a week I have known. The thought of never feeling like I did before is getting me down. Saying that I had my best day yesterday then this morning I'm a disaster area again. I have sent off for the BCC pack, thank you for that. I am quite near Buckingham. I have been to Pregos for lunch although not recently! Did you go to Stoke or MK General or somewhere else Philidel?
I hope you all have a good day.

Best Wishes to everyone.

LooLoo x x

Sam_BCC
Member

Re: Diagnosed on Monday

Hi Looloo

I am sorry to read of your recent diagnosis. As well as the support you are receiving from your fellow forum users you may find it helpful to get the BCC resources pack. It has been designed for those newly diagnosed and has lots of helpful information. If you would like a copy please go to the following link:-

http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

sandra44
Member

Re: Diagnosed on Monday

gosh there doesn't seem to be a "standard" treatment with this, no-one mentioned giving me tamoxifen pre op,will ask why when I see onc next week. Philidel your op sounds exactly in same place as mine,the way it's been cut round the areola has hardly left a scar,just a bit of a dent where the lump was taken out . Have you got a date for starting rads yet ?

Philidel
Member

Re: Diagnosed on Monday

Hi again Looloo

My lump was 15mm. When I had my mammogram & ultrasound they put it at about 2cm, so I guess there is a margin for error at that stage.
I'm also in Buckinghamshire - Buckingham itself to be precise. Are you near?

sandra44
Member

Re: Diagnosed on Monday

Hi Looloo,hope you are surviving all this madness and finding lots of info and support on here,I have found it great being able to shat to people who have been or are going through the same thing.

Re wait for your treatment,it's HELL ! I went to doc 9th Jan,one stop clinic 27th Jan,confirmed cancer 29th Jan, op 23rd Feb,had lumpectomy and sentinal node biopsy, grade 2 15mm tumour,oestrogen and progesterone +ve ,herceptin -ve. no spread to nodes. Got appointment with oncologist 31st March to find out what is next,consultant said might still get offered chemo due to my age,44,and pre menopausal so as oestrogen positive will have my ovaries"messed" with as well as prob tamoxifen but not on anything as yet. Will also find out how long will have radiotherapy for.

Once you know where you are at re results and treatments it's a bit easier,it's the waiting that certainly does my head in !
Good luck with it all and keep chatting.Big hugs.

Sandra x

Susanne_A
Member

Re: Diagnosed on Monday

Mine was from January 16th when I saw my GP to February 24th when I had my op. But I didn't have any neoadjuvant treatment - that might be why yours is taking slightly longer, to give the Tamoxifen a chance to shrink the tumour...?

LizzyM
Member

Re: Diagnosed on Monday

Hi LooLoo
As everyone says, welcome to the place you probably don't want to be! - but there is loads of support and information here, ask as many questions as you like - someone will be there to help.

As to the delay - to us it seems an age - but to the medical professionals dealing with us - it isn't an issue. I know everyone's situation is different - but for various reasons (mainly a second lump becoming evident, which, thankfully turned out to be OK!)my treatment has been delayed quite a while.I had my mammo in Dec, recalled Jan, results of biopsy (DCIS) Feb 16th. My op is next Thursday April 2nd, but I have been reassured that this delay is OK. I'm sure it will be the same for you, having said that - mentally, the delay is a pain - you just want things to move on, don't you?

Anyway, keep in touch, ask questions, look after yourself++++ - your worth it!
Take Care
LizzyM

LooLoo
Member

Re: Diagnosed on Monday

Hi Kitten Kat,
Thanks v much for all the info. You have reassured me on the early start of Tamoxifen and the sentinel node issue. I am in Buckinghamshire area. I wish I had gone with the NHS from the start. The only thing I havent had to push the private people for has been the bill - and that a procedure on I hadnt had so I wrote to ask for a corrected one. They have phoned hassling me since asking what is wrong exactly with the bill which I think they should be able to tell from their own records!

Hi Susanne and thanks for your comments. I am getting twitchy about the wait. 2 months from finding a problem to scheduled op. Is this a reasonable wait?

Hi Philidel,
What you have had is the best I can hope for I think. How large was your lump?

Thanks to you all and Best Wishes for your treatments. x

Philidel
Member

Re: Diagnosed on Monday

Hi LooLoo & good luck with everything.

Tomorrow will be 3 weeks since my op - wide local excision plus sentinel node biopsy. It all happened through the NHS and, apart from a couple of clinics running badly behind schedule, I have absolutely no complaints. Everything has happened very quickly and my consultant is brilliant - excellent caring manner plus the neatest incision ever (he took the lump out through an incision around the top edge of the aureola, so the scar won't be noticeable). I also had a single room in the hospital, and was back home 2 days after surgery without the dreaded drain.
I too was put on Tamoxifen when I received the biopsy results prior to the operation. From my research it appears in some cases it may help reduce the tumour a bit before the operation. Fingers crossed yours is just oestrogen receptive and not HER2 receptive (the latter having slightly better prognosis).
The pre-op assessment is nothing to worry about they just run a few tests to make sure you're fit for surgery and so that the anaesthetist has all the details about you he needs to calculate the anesthesia - some blood tests, blood pressure, pulse rate, weight, chest x-ray, maybe ecg (I had this done as I have some peri-menopausal palpitations), plus loads of questions about general health & false teeth!
And I know you'll be worried while you're waiting (the waiting is the worst, I think, but try not to panic too much). I tried to prepare myself for bad news while convincing myself it would all be ok. In fact it is all ok.
I had my pathology results yesterday and it's a grade 1 oestrogen-receptive invasive ductal carcinoma, T1, without any vascular invasion and of the 15 lymph nodes removed none were affected! As my consultant said, it's the best I could hope for. I just have to have 3 weeks of radio and keep taking the Tamoxifen.
Let's hope you'll have a similar outcome.

Susanne_A
Member

Re: Diagnosed on Monday

Having had experience of both NHS and private, in some respects NHS is better. On urgent and emergency stuff, NHS is quick enough - although it's scary having to wait with cancer, in fact a couple of weeks is almost never significiant. You do get a bit more time with your consultant if you go private, to ask questions, but you can still get that from NHS if you're persistent. You get a nice single room (but it can get lonely!) and coffee whenever you want it - but unless your local NHS hospital is one of the dirty ones, it's hardly worth it. The other thing is that sometimes having surgery in a private hospital is actually MORE risky, as they don't always have the full back-up on-site.

kittenkat
Member

Re: Diagnosed on Monday

Loo - not all surgeons do the Sentinel node biospy, my surgeon didn't, although it can help identify if the main node is involved if it turns out to be you may need further node surgery anyway - some ladies on the site have had to go back for this after the sentinel biopsy bit and when it hasn't been done so no help for you really - a lot of it comes down to surgeons preferences it seems. The stage is not usually known till after surgery and full path report, if you have a node biopsy - I did in my other breast but not the operated on one - they can tell the grade and results ie hormone sensitive and her2 (herceptin) sensitive from them so it seems but I still haven't had my her2 results yet as our hospt sends them to Birmingham and it takes up to 12 wks sometimes depending when a batch are sent so the breast nurse says. Herceptin seems to be a bit of a double edged sword - so the nurse says again but if you are receptive to it then its another treatment after the rads.
MY friend had surgery 6 yrs ago and they started her on tamoxifen straight away after surgery prior to chemo but then stopped it as her results said she wasn't receptive - again it can be down to the oncologist treating you and their plans....the breast nurse will go through the surgery with you, again this depends on area, I was in for day surgery for my wle and node clearance and home by 3pm, others will keep you at least over night some 4 days whilst for a mastectomy you could be in 1 night or a week.....not really any def help but hope some of it is....mary x
ps lou - what area are you in...
pps re private and nhs - luckily for anyone with breast cancer the nhs is very good in their care and many say actually better - I have met 2 women at my chemo that are having private treatment - the only difference was they had to pay for their meds that the nurses give you ie anti-sickness etc but get to see the oncologist privately and prob have a coffee before!

LooLoo
Member

Re: Diagnosed on Monday

Ah thanks you two. I got loadsa questions. Any help would be appreciated.
Is driving on Tamoxifen ok if I feel ok?
Why would I be given Tamoxifen B4 surgery when most seem to have it afterwards?
My indent on my breast seems to be growoing while I am waiting for surgery, does that mean my lump is?
How long does it take for Tamoxifen to start working?
Why does my path report not mention what stage/grade my cancer is?
Will someone talk me through my treatment and answer my questions and if so when?
How do I know I am going to the best hospital and getting the best treatment. I dont know whether it is worth trying another private route or staying where I am?
Is being HER2 positive a good or bad thing - I still don't know what I am.
Why havent I been asked about sentinel node biopsy?Will it happen at my pre op?

If anyone can help with anything I'd be really grateful.

Best Wishes LooLoo x x

Susanne_A
Member

Re: Diagnosed on Monday

All we seem to do is wait - for test results, for treatments... I think that's why they call us "patients."

kittenkat
Member

Re: Diagnosed on Monday

Hi Lou - what are you particularly worried about - we might be able to help....mary x

LooLoo
Member

Re: Diagnosed on Monday

Thanks for your replies. Back from docs. Wish I hadnt gone. Came away with sleeping tablets - temazepam - and no further info that I wanted. At least he freely admitted he wouldnt be able to answer everything from when I arrived - and he couldnt. The let down seems to be because my hospital BCN are not available till next week and a lot of the questions I have are related to the care I will get there. In the meantime I feel due to the lack of support from my own surgery and the hospital I am in limbo land. Sorry to moan to you all cos I know we all have enough problems to deal with already. 😞

kittenkat
Member

Re: Diagnosed on Monday

hi loulou....sorry you've had to join us but we're here for you....once you get to surgery stage things seem more controllable for you yourself and thats important. I/we know what you mean about all the aches and pains and the worry they bring, the lack of sleep - you might find getting something herbal or from your gp to help you sleep will help too - not on a regular basis but every now and then, thats what I do. Where are you from as lots of ladies seem to meep up from simialr areas so thats good too....take care and keep posting! mary x

Susanne_A
Member

Re: Diagnosed on Monday

Hi LooLoo - welcome to the club no-one wants to join. Good news on your hormone receptor status - apparently that means they have more treatment options after surgery to zap the little monster out of existance.

LooLoo
Member

Diagnosed on Monday

Thought I would join you all. I was diagnosed this week and am due for surgery in a couple of weeks. Not sure what yet but this may be cos I have forgotten half of everything they have told me. Very up and down. Imagining that this cancer is growing and spreading as I type. Seem to have aches and pains which make me feel worse and even more convinced it is spreading. I have some DCIS and some IDC. Dont know the stage, or is it grade, but it is receptive to hormones 8/8. Dont have a BCN at my hospital available till next week so seeing my doctor this morning with loads of questions. I thought I had asked them all to a lovely calming BCC person on the helpline earlier this week but now have loads more. Hoping the doctor, not my own cos they said I couldnt have an appointment with her until next Wednesday, will help. Started down the private route from asking for a mammogram and found them so disorganised (not the nurses the admin)that I am now back on NHS. I had thought going private would be less stressful but it was anything but. Best Wishes to all. LooLoo x