Breast cancer - West Herts pct

[LimeJellyforBrains]

Went for mammogram, ultrasound and biopsies last Thurs at St Albans. Three lumps. Could tell by faces/sympathy they thought it was cancer. Lovely head nurse could tell I had guessed so told me too.

Armpit seemed clear so maybe breast surgery only but aware this could change.

Appt tomorrow to discuss surgery. Remembered we have health insurance so could go private. NHS could be youngish female surgeon, Watford, mid Jan. Phoned nurse re phi and she warned 'gold standard' sentinel node sampling not available at Spire Harpenden (convenient) but is at Spire Bushey (less so). Could in theory go private anywhere eg top London hosps? but travel to consider (2 dc).

Sorry Typing bit curt as also broken right arm . Had to have plate put in it at Watford and not v impressed (mainly with nurses). Private wing at Watford?

Very scared/confused. How to choose where/by whom to be treated? What questioms to ask tomorrow? Anyone with local or any experience or advice for me Please?

Any advice on options/questions or just a bit of hand holding would be gratefully received.

LimeJelly - I'm sorry you are going through this, it is a shock when you receive such a diagnosis. With regard to the hospital choice, I'm not sure what to suggest, I would say sentinel node sampling is an absolute must, (I'm not sure what gold standard means?)

I would bear in mind whatever hospital you choose, that if you need chemo (and hopefully you won't)you will need to travel to the hospital fairly frequently and most of the time you won't feel very well - so thats a consideration if Hospital is a distance away.

With regard to waiting until mid jan for your op. - its unlikely that will make a difference.
I can tell you that the NHS treatment I have received (DX 2 and a half years ago)has been excellent.

As for what questions to ask, - I would suggest write down anything you can think of, - it's easy to forget things in the anxiety of the moment. If you can take someone with you for support, I would recommend it. You will have a breast care nurse - she will be your life line as it were - they can be phoned and consulted whenever you need it, whether for clinical info. or just a shoulder to cry on.

As far as surgery is concerned, you might want to ask about the practicalities - healing time, chances of lymphodema (flud build up you can get when you have lymph nodes removed), whether you would like reconstructive surgery (depending on what type of surgery you have).

It's a difficult time, - and I'm happy to answer any questions you may have.

If you look down the threads on health, you will see the 7th Tamoxifen thread, - we are a BC support thread - hand holding is our speciality - you will be made very welcome, - we've got a variety of experiences between us, and there is always someone around for a friendly chat lots of love and good luck xx

Thank you so much for reply Kurrii altho has also brought on the tears at last and trying to hide from my 2 DSs...
Gold standard just means 'the best' I think ie using radioactive materialo not just blue dye. Is a bummer. Just being able to have it done at local Spire would have been ideal.
DH will come with me. Will prob take the 2 boys (10 and 7) as don't want to tell anyone just yet. Is this mad?
If I did go private could maybe be a bit quicker but this may not be so good with time of year and school holidays.
BC nurse said hopefully will be just surgery. Breasts v large so scope as things stand for removal of quadrant and reshaping. Or could opt for mastectomy.
Yes have been avidly reading Tamoxifen thread. You are all so lovely and will be honoured to join you but was hoping thread here might yield some local advice.
Wish nhs hosp was closer or local private hosp had more facilities! And this weather makes any travelling difficult. Am too scared to walk on ice now. Can't drive for some time.
Is taking Tamoxifen a given whatever the surgery etc?

A bit of a cry is often helpful and necessary - you need to release the emotions.
I don't think its mad to take the boys, but maybe not into the consulting room, would they wait quietly outside? - The only disadvantage of it I can see is that tears often appear unexpectedly at consultations (or they did in my case!) so that might be a consideration for the children.

Tamoxifen is a hormonal treatment - its an oestrogen suppressor, so if you have a BC that is oestrogen receptor positive, (and lots of people do) and are pre menopausal it is likely you will have it. But it's not used for every kind of BC. There's also a variety of other drugs available - and they will find the one that suits you best.

Take everything a step at a time, and get through each day as it comes. One of my nurses told me to 'deal with what you know and try not to think about the don't knows' and I've found it useful advice

When and how you tell people will happen when it feels right for you, I found that part very hard, but once it's done its something of a relief.

The broken arm is rotten luck at the moment - do be careful on the ice.

I hope someone who knows your area can help you out with hospital info

Hi from me too, Lime Jelly

I am glad you have found our other thread, but I can't add anything to what KK has already said in terms of advice. I would reiterate that the sentinel node biopsy is a MUST and that you will be glad of a local and convenient hospital. In my experience the NHS is really excellent with BC, but I do not know anything about your local choices.

You are having a tough time at the moment: I am so sorry to hear about that, but you really aren't alone. Vent away.

Thank you so much. Oh god, tears, tears. Would not be surprised if I'm on the Tam then as yes pre-meno and think my hormones bit wild (several MCs too). Sorry for all abbrevs can really talk properly when have 2 hands to type quicker!
The private hosp that does the proper sent.node thingy is not too far from Watford hosp which is £35 taxi ride away (to give idea of distance) so maybe not much diff. Would be same surgeon as there too. Worried she's quite young tho. Would hope to escape raging heat of nhs ward and have more peace and quiet tho.
At least local Spire boasts of 'scalp-cooling' facilities if I need chemo! But hoping wont comw to that. Will know more from biopsy results tomorrow?
oh no it's lunch time! Left-handed cooking is darn tricky! Sarnies are impossible cant spread or slice anything. ds1 tries.
Has taken so long to type this that hope will have crossposted with lovely mner saying 'been there done that, this is what you must do'.

Yes boys will stay in waiting room btw. Hope the other sad ladies wont mind them. No kids there last week but bcn said it would be ok.

i havent read other replies so sorry if i repeat.
I would be tempted to stay with NHS as ts unlikely that PI will pay long term treatments and its better to stay with same specialist thoughout imo.
Also once treatment starts, wouldnt you be seen at Mount Vernon?
I hope your ok and get answers soon, and still hoping for good ones for you. x

we have had to take our children to appointments twice in the past and the macmillian nurses have been wonderful.
Take mags, DS, and toys as they wouldnt have anything there ime.
If I was closer and didnt have my 2 right now would gladly come and sit with them

Limejelly - as you say you will find out more tomorrow - I think the treatment you need will to some extent dictate how convenient your hospital needs to be, you are likely to be offered radiotherapy - which involves daily trips to hospital for 3-4 weeks usually (only 15 mins for the therapy but it is daily).

IME you don't have to stay in long with the surgery - unless you want to(I had a mastectomy and was only in over night)I wouldn't worry about the surgeon being young - they are often the most caring ones and up to date with their knowledge. Also I would like the idea of a female surgeon I think - more sympathetic to a woman's body perhaps. But you must go with whatever makes you comfortable of course

I have to go out this afternoon, - so don't think I've abandoned you - and yes I am sure there must be some West Herts mners who will be along soon. xx

Thank you so much for your replies. Means so much to me. So good to talk to you after bottling this up all thru broken arm and following surgery and run up to xmas with all my friends and kids jolly.
Yes Lisa, would be Mt vernon for nhs radiotherapy. Do you know it? Have just looked at spire bushey online and they can do rad there so that's top runner on the private side for me. Can see the advantages of sticking with nhs and would prefer. But the mad thing is lovely St Albans breast clinic is only 'allowed' to refer me to Watford altho other hosps eg QEII and Luton & Dunst are closer and easier to get to! (Also dh was in qe2 in sept and nurses were kinder.)
Lisa you are lovely for your offer.But I knew that already (long long time lurker). Thank you! Boys have no DSs despite asking for them again this year but the appt is at lunch time so could take fiddly food/snacks! Maybe squash a pack of crisps so takes ages to eat...cleaners/staff/patients would love me.
xxx

You don't need to have just nhs or private treatment. My mum gets what she can on the NHS and everything else private. She has secondary breast cancer and is seen by Dr Johnston at the Marsden in London. They are v v v good there and you can ask for a referral on the NHS to have your care there.

Best wishes x

hello -just butting in from the tamoxifen thread to say that my NHS treatment was fantastic- very fast and the SNB was done with radioactive thing and blue dye -if that's any help- probably not ! but do come for hand holding on the tamox thread. xx

I know mt V because my neighbours son and cousin both had treatment there. DH treatment is at home and his under hammersmith so dont know it personally.
Im pretty sure under new rules you are allowed to choose to go to ANY hospital you wish.

just looked at up, and as of April 2009 you are allowed BUT "A choice of hospital is available for most patients and in most circumstances. Exceptions include emergency and urgent services, cancer, maternity and mental health services. If you need to be seen urgently by a specialist"
:(

Debka - is that Simon thompson as I could also see him at watford and maybe even meet him tomorrow?

MAS Can have the proper SNB at watford and spire bushey heath but not my nearest spire.

ugh ignore me Debka - completely the wrong name! Sorry.

Good luck with your appointment today LimeJelly, - will be thinking of you

me too x

good luck

No advice sorry other than to say that my lovely friend was treated for BC at Mount Vernon and the staff were amazing. Good luck for your appointment.

Hello lovely people and thank you so much for your good wishes.

Couldn't post yesterday as laptop got virus, think from MN, Tues eve and didn't dare try to post while there still seemed to be probs.

The appt went much as expected after what I was told last week: Three lumps, grade 2 invasive duct carcinomas. Still hoping for removal of quadrant and reshaping (G cup so plenty room for manoeuvre!) but aware could end up with mastectomy (but hoping desperately not). The lumpiness, to me of course, seems to spread by the day but know some prob caused by the biopsies. Had about 6 i think. Thank goodness was on strong painkillers for the broken arm! TBH My huge boobs have given me such a lot of probs with backache/shoulder ache and trying to find bras/swimsuits/strappy clothes, that the thought of them both ending up smaller actually makes me feel quite (sort of, a bit...) ok about it. Hope that doesn't sound wrong, but i am the kind of person who can find myself a silver lining in most things, even if it's a bit of a 'bad taste' one!

Had decided to see the female surgeon privately at Bushey Heath (as not much further than nhs Watford) but what a blow: the top notch injection for SNB is not done there after all so would still have to go elsewhere for it day before or same day. So think I have opted for a Mr Thomson at nhs St Albans (didn't know could have surgery there - much closer) with injection at Hemel Hempstead beforehand. Have appt to see him next Weds and will now attempt not to think too much about it but get on with one-handed Xmas!

The bcn is lovely, as the options/info about who/what/where kept changing I got so confused and frustrated that i ended up asking her what would SHE do and she would do what i plan to, but also said that i could always change my mind after meeting him next week.

Something a bit more solid than lime jelly for a brain would be v useful right now!

ah, well that seems like a plan- and it's always much better when you know what's going to happen. If it's any help my tumour was 24mm invasive ductal carcinoma,grade 2. Nodes clear- had SNB at same time

sorry-that was a bit abrupt -a friend came to have coffee just as I was typing ! Wanted to say that you are most welcome to join us on the tamoxifen thread for support and encouragement -between us we've had all the possible treatments! Take care and try not to worry- one step at a time is best.

LimeJelly - I'm glad you have your appointment is out of the way, and have been able to discuss your options about where you are treated. It is very confusing and and it's hard to make decisions like this even if you are normally a very decisive person, (I think we all go through a limejelly for brains phase after DX !).
It's always a shock - even if you are very much expecting it, - so give your self time to adjust and get used to things. Remember - you're now on the road to getting well again

BCN's are an absolute god-send for helping you through all the choices, fabulous people.

Enjoy your Christmas - try to relax and take it easy. And you will be very welcome over on tamoxifen if you feel like a chat.