Topic: just diagnosed with BC, London

I am sorry they have not taken the time to speak with you about your fears.

Many, many women continue to work even through chemo treatments.

One of my best friends had single mastectomy and nodes and returned to work after one week (she did it over the holidays as to not miss too much time). She continued to work throughout her chemo and only ended up taking a couple days off the entire time.

Everyone reacts differently to treatment-some heal faster than others, some have more complications, etc.

YOu mostly need to go by how you feel and take the Doctors advice about lifting, exercise, etc ao as to heal well.

Hopefully others will pipe in here with their experiences.

Dear RockysMom - this is just the kind of info I want to know!!!  This is pretty much what a friend (who is a MacMillan Cancer Nurse and has had cancer herself) told me and I had been doing reasonably well mentally until the bloody oncologist looked at me as if I was a) stupid b) a lesser species and told me to write off the next 12 to 24 months.  Due to a couple of snarl ups although I am diagnosed with cancer of left breast (lump about 2.3 centimetres)  and calcifications in right, I haven't any further info on stage etc which is what I expected to hear when I met this woman. So it seems they think it's ok to be so bloody rude and insensitive when they haven't even got the full picture, have no idea who are what I am like as a person, general level of fitness etc. 

Like most people who have to work for a living, there have been many occasions in life when I have been sick and exhausted but still had to go to work.  Most of us don't have the luxury of not doing so.  I do understand that there will be many occasions when I am laid up and can't do a thing, but as you have stated, different things happen to different people and I think it is better to try to move forward with some optimisim as opposed to none.

Doh!!   None of us just got our brains removed with a spoon!   We get it I am sure, none of this type of thing is ever going to be easy.  Thanks for your input it really helps.  May I send a big hug to you and wish you very very well.

 .....

Dear Anna, thanks for this.  What a nice coincidence - I am a huge grecophile and usually come over at least 3 times a year.  Depending on what happens next week I may jump on a flight and head for Serifos and Kithnos.  You may not want to say on here but I wonder where you are.

What a blow to you just as things are coming together in your business.  I hope all is going well on that front (early in the season yet isn't it).  It is a shame to have the shine taken off all your hard work to create your new business just when you have every reason to feel excited.  It is a big thing to create a new life overseas and I must say I am pretty jealous, even though I know that running a hotel is a tricky thing and hard work.  All the very best to you. 

At the mo, it is likely that I will have chemo, then op then radiotherapy and one thing that has really made me miserable is thinking that maybe I won't be in Greece this year, or maybe only for a quick week before the chemo starts.  The natural beauty is always such a tonic.

 .....

I am sorry anyone has to go through what we have all encountered - who wouldn't be.

  It does help me a lot to have the information that you and rockysmum have provided because it is not the doom and despondency my onco put across (flippantly I must add, just a throwaway line I think). I know very well that much of this will be grim but there is something to be said for having enough joy in life just to be glad the sun is shining.  I live in central London overlooking the Thames, and today is sunny, the swans, ducks and geese are making a din over something and two weeks ago I would have been whistling, making a move for the gym and generally feeling joyous.    

 Like lots of bankers, I lost my job just before Christmas but have used this time to get fit and well and to just enjoy Spring.  I realised it was years since I had done so as I get up for work in the dark and come home in the dark.  We've had a marvellous Spring and London is absolutely packed with tourists from all over the world due to the weak pound etc. 

 I thank you for the support - it does really help.  Though there is  useful info on the UK sites, I find the US ones a bit more sassy which is what I need.

 Onward and upwards girls!!

 With much love - Virginia

Hi Virginia

I am in Crete-Hania -Ag Marina-if you are ever in the area.

Get the sun in now -during chemo and radiotherapy it  is a no no which is hard  so its night time swimming for me . I agree with you the american site is much better and I have got all my info off there and had all my questions answered.

Today I am 5 days post chemo and Iam  feeling good -pulled up a few weeds in the garden and fed my two adopted kittens and am actually hungry so -smiles today.

I do miss the UK at times but I am glad I am here for this  as there has been no delay at all and I go to the hospital where my husband is  for  treatment and we get a discount which is good as  this is one expensive boob.! It means I have to fly to Athens every two weeks. Luckily(!) my youngest daughter was out of work and she is filling in for me when I am away. 

When do you get you pathology report .?

Keep in touch and let us know how you are doing-hope you have a good weekend

xxx Anna 

Virginia...I hope all goes well with your Tuesday md visit. Ask lots of questions as what type of staging you have, grade and tx suggestions. I brought along a notebook, had my dh write everything down as I forgot a lot. Ask for all your lab, path, surgical, mamo reports and put the a three ring binder for yourself. These are your records to keep. I am up to 2 huge binders now lol as I have had other surgeries this past year. Not bc yeah. Oh I love the flower show too. Have you ever been to the US for a visit? Keep us posted..you are in my prayers.

Blackjack

Dear Anna, and Blackjack,  lovely to hear from you.  I wish I was drinking a frappe in the harbour at Chania.  Or what a lovely thing it would be if I was in a taxi from Akrotiri coming down the big hill and seeing the fabulous view over the harbour!!!.  I would be very interested in hearing more about the London BC nano cell research.   I think I have read a bit about research work in Athens (quite some time ago before this bunch of surprises arrived) - there's some good science being conducted in Athens and Thessaloniki.

Current practice in England is that you can be copied on all correspondence to GPs, which I have been.  Which is how a found out on Saturday (when the copy letter about my last Monday appointment arrived) that whatever the cancer is, it is invasive.  Not told this on Monday of course!

The nature of my career demands accuracy in my work and I am finding the generally somewhat slapdash approach to various things extremely irksome.  But that is typical of the NHS and no big surprise.  Tomorrow I will have my notebook open and a medical chum coming with me, so I hope to attain some degree of knowledge.  I will take your advice and ask for a copy of the path report.

 The invasive thing was a bit of a frightener, but as she has in particular described to me a lumpectomy amounting to something akin to breast reduction (matched simultaneously on the RH) I am crossing my fingers as to stage etc.

 I have now become neurotic about shoulder and arm pains I am having, but I think these are what I had before this was diagnosed and actually what lead me to my GP.  What I need to ask tomorrow is if it is ok to go to the chirpractor to get fixed, but I have now become totally terrified that this is invasive cancer of the bones etc.  Probaly utter nonsense - I think I probably snagged a nerve whilst weight training.  Doc said it is perfectly ok to train but yesterday I found that I can't really do the upper body works due to sore boob.  Did do legs and treadmill though, and over the day walked a total of 14,000 steps so that was good.

Went to Selfridges' to look at wigs on Saturday and was really dissapointed at the selection.  Also the department was really a bit tatty and I couldn't understand a word some (Bulgarian?) assistant was saying, nor could I work out why she fetched sort of Suzy Quatro circa 1972 thing in strawberry blonde and brown  when I said I wanted something like my own hair, i.e. auburn quite long.  So I turned on my heels and walked off.  There is bound to be somewhere better than that.  !!!        

 I am just nipping off for lunch and out to dinner tonight.  It has been wonderful weather this bank holiday here, and the riverbank outside my flat has been even nicer than usual.  Ducks, swans and geese swimming gently around sunning themselves. Bliss.  The photo (my avatar) is of the evening view from my flat over the Thames.  I love my home here with a passion and I really don't know what I'd do if at some point I lose it, which if I am not in a good job I will.

 Thanks very much for your loving input ladies - it appreciated more than I can possibly say.

with much affection from your friend across the waters - 

Many thans Cheri and greetings all round.  I just did a long post then deleted it.   doh!

Thanks to all of you for your support - I'll post after the appointment tomorrow.

Massive hugs to you all ladies -

xxxxxxx

Hi Vrirginia

I expect you are overwhelmed at rthe moment but before I forget look at scarfhut.co.uk -Elaine is great and been through bc-does a good band wig which I bought  as i was reallly in denial about the wig bit-her shop is Beaconsfield way. My cancer is invasive too -very small but gone to the lymph nodes-I had a lumpectomy and 27 nodes out. You will have to have a load of tests now so be as prepared as possible .

Will wait til you get the info.

Thinking of you all day today

xxAnna 

Hello Annadou, Blackjack, Rockysmom and Cheri2 and everyone,  I have some pretty good news - phew!!!

OK, Righ side breast, no cancer in calcifications.  Left:  - this is better than I was expecting so I am feeling pretty good -  Invasive Ductal thing, but lump smaller than oncologist had thought, STAGE 1, she is pretty relaxed about my nodes but I'll have the test thing shortly, I am HER2 negative, and am very oestrogen sensitive, so overall the onc was very please and so am I.  So, I don't have to have chemo first to shrink anything, and am scheduled for surgery June 17th.  Could have gone in a week earlier but I want time to organise a few things and hopefully nip to Greece for a few days.  Having breast conservation surgery on both sides.  Could just go for lumpectomy on Left, but as I am a 34Gor H cup, I think I'd like to go with doing both sides now.

I am being offered a smal trial - this would be to take (probably Arimadex) for two week prior and two weeks after surgery.  I think this same concept is being trialled at places in the US too.  Any thoughts?  Sounds ok to me.   I would also get examined etc by a really top line professor.  As the hospital is pretty famous, this may very well be a useful thing to get into. 

 Oncologist much more pleasant today.

I will get a copy of the report through the post.   Tonight I am a bit too spaced out to write very cogently - I feel as if I have been walking around in the centre of a huge sack of sand.  Weird feeling, but now I feel as light as a butterfly!!!

 Anna - thanks for the wig tip.

I'l do a proper post tomorrow but thanks so much to all of you for your support.

love and kisses -

Virginia....happy news for you Stage 1 is good. If you are ER+ and are post menopausal then you can take Arimidex ( hormonal therapy) for 5 yrs. That's what the onc md's offer us here in the US. There are a lot of women taking Arimidex..just ck out the Hormonal Thread. I would go on vacation too before my surgery. Have fun in Greece. Glad to hear you liked your onc better. Maybe because you had another person with you taking notes.  Hugs to you.....

Blackjack

Dear Girls,

Thanks so much for all the speedy replies.  Cheri - bloody sorry about your expander having to be redone - what a blasted pest.   Big kiss to you.  I can see that one of the things one has to develop in all of our circumstances is constant  patience with how one's schedules have to be re-arranged and the entire thing of having to constantly re-invent one's life.  I am fed up with it already and I only got my first diagnosis on May 9!!!  Trouble with me is that by nature I am totally driven which is all very well in career in lots of other places, but fairly useless when in these circumstances.  I no longer set the agenda!    Aaargh !

 Ironically the headhunter called me 10 minutes ago to say there's a number of job interviews coming through.  I have delayed things by saying I am away during June due to family difficulties. 

I have to say, I do have a certain sense of relish - if I manage to get myself back into a good job this year despite all this, it will be a major achievement!!  It is sort of a matter of principle to get back in because a) I got made redundant lasy year and want to sort of beat the wrap as it were, and b) doubly so coz of this.   It isn't to say that I might not do a career change later, but I want to win first.  By the way, just in case any of you have connections - I am looking for non-executive directorships on the Boards of US/or international public companies.  I have a great resume for any companies either already involved in the UK or looking to do so. 

 The onc was much warmer yesterday.  I think she had the proper information to hand and was able to impart things of a concrete nature.  I think last week she rather over egged the bad news cake (what does that achieve?) and did say yesterday that actually the lump etc was smaller than she'd expected/thought and the op a bit smaller.  It will literally be a lumpectomy on the left and some re-shaping, and breast reduction on right - in another words I am also getting the classic cosmetic breast reduction op (where you end up with those sort of anchor scars - not bad at all).  It will mean I will at some point be able to run which I haven't been able to do cos just too uncomfortable. I walk loads already, so look forward to extending my exercise repertoire.

It did help a lot having my medical friend with me, and it is always useful to have a witness!  Afterwards we discussed some aspects of things I don't like which really come down to the useless nature of huge organisation where info doesn't flow and people like receptionists can't be bothered to find out where you are supposed to be.  Funny how people that don't get sacked very quickly adopt the habit of being useless.   No-one likes hospitals but I am extra untrusting as my late father, a very strong, handsome and amusing man, died from complications of MRSA.  He was in his 80s, but was pretty much set on hitting 100 and thought he would do so.  The whole thing was so nightmarish I can't express it, but I think I am never wrong to be suspicious and questioning about everything to do with hospitals.

 The little Arimidex trial is in order to discover the efficacy on recurrence/survival rates etc for prescribing arimidex prior  to surgery, rather than starting later on.  I have looked into this a bit -l, and other trials have had good results.  I don't much like the sound of the effect all these drugs can have on your bones, but I am told by a MacMillan nurse (cancer specialist over here) that it is not quite so bad when you are already doing your 10,000 steps per day etc etc.  It still needs monitoring though and as time passes I will need to work out a really good exercise, nutrition, vits regime specifically with this in mind.  To be honest there's not a lot of tweaking I think I can do coz I eat and always have eaten healthy food etc.  Incredibly unjust all this - I might just as well have eaten vast piles of fries and lard plus huge quantities of fizzy drinks and lard.   Bah!

I am to have the Sentinel Node Biopsy the day before the op.  Actually I will ask if there's any chance of PET or Cat scan but it doesn't come with an NHS course of treatment.  It is complicated here - I am pretty sure I am not allowed to just say I'll pay for one.  In this system that is considered as a sort of cheating.  I will ask though.  At the moment the onc is still talking chemo and radiation.

On another thread,  a lady came up with a fantastic phrase for describing rude/idiot people :

"one step away from a turnip".      Love it!!!

Blackjack - I am a water baby too!  My dad was a royal navy officer and we are are a very watery clan.  There's a lot of water activities on the Thames by my home; today the kayaks are out and the dinghys usually come out thursday nights and all day sunday.  Great fun to watch.  We have gorgeous baby fluffy geese - I'll t ry to take a photo to post.

Anna - wig place looks nice - many thanks. I am trying to fathom out when I can travel.  I am just going to walk up to the hospital now coz I want to check I have actually got everything recorded - there are just so many appointments before the op. 

Thought I might try to kidnap a toyboy on the Fulham Road and hold hostage until the op day.  What do you think ladies?  Too tiring before major surgery?   oh well, all right then.......

As you can tell, I am mildly hysterical with relief today. 

 But thinking of you all.  I am very lucky with my friends who are just being fab.  But this entire thing of posting on here,reading about other people, the pleasant excitement of making new friends from overseas has for me quite a romantic thing to it.  I love the idea that disparate strangers can reach out and help eachother, be brave enough to be vulnerable and actually, to share a space where we can relinquish our other life responsibilities and commitments and be free to talk of these intensely challenging things. 

 lots of love to you all and I do hope you ae each having a decent day.

xxxxxxxxxx

Great news, Virginia!    Sorry you had to join our club, though - deepest sympathy.  I am amazed at how calm you sound.

Sorry to hear you've been made redundant during these difficult times, but I think these things always happen for a reason.  There are some women on these boards who still work with Stage IV cancer, so you can continue to pursue your career, rest assured.  You strike me as a courageous woman with a lot of drive, and that is just exactly what it takes when you're battling breast cancer.

For what it's worth, my own career has advanced very nicely since I was diagnosed and had my treatment, although I was Stage 0.

just to let everyone know that Virginia is on holiday-she sent me a message some days ago but i have only just seen it. She is fine

Looking forward to Miss Mouthy getting back!! 

Hello girls - I am back from my lovely trip to an island in the aegean.  I had such a fantastic time,  Lovely little island with the best beaches in greece, usually with about 3 people on 'em! Gorgeous little white chapels with blue domed roofs - (hundreds of them; it's a greek island thing).  In short, every possibly wonderful thing anyone could ask for, so came back in very mellow mood, pretty much ready for the op on June 16.

 Sadly, rude cow from hospital phoned on my mobile this afternoon to say op is cancelled and has to be re-scheduled. No propper explanation given, said that my surgeon had warned me this might happen (BULLSH*T ) also told me she couldn't get me on the phone in greece (BS, everyone else managed fine) and I challenged her on that because I spoke with my cancer care nurse on the phone yesterday and she knew nothing of any cancellation.  so either a) no call was made to greece or b) person c doesn't tell nurse g what is going on.  Some bloody specialist cancer care team this is.

 So, I got right on the phone to make an official complaint, because to date not one thing is ever as described and it is really disturbing me.  Also I spoke with a very, very nice gp at my surgery about all of this, and he told me it sounded really poor - a close relative of his has BC too and her experience has been v different from mine.  He encouraged me to make a complaint.

I am actually in some pain now too.  I am a bit worried because I have a sort of stiff neck and slightly sore eye same side as the dodgy breast and am worrying this is some lymphatic horror.  Gulp.  Now I am panicking that this is something metastising.

Tomorrow I have to go to the hospital for "pre-assesment" for 3 hours.  My assesment of them is pretty bloody negative.  I just want to get on with this but don't feel comfortable with this team.

So thanks very much Royal Marsden Hospital.  Every time I get myself into a good emotional position to deal with this garbage, the Royal Marsden  manages to beat me back down.  In the UK, this is a "world class hospital".

..............

I have read through everyone's posts - love to you all and especially Jude.  I have emailed her to let her know that I have awarded her an English honour and she is now Duchess Jude.   

You are a great bunch of people and I am very glad I have the pleasure of your company.

 I thought about starting a thread for Vicarious Holidays - might be fun to see people's snaps.  In the middle of winter here (or maybe even now - 35 degrees in athens, 18 in london) I often look at websites of sunny countries and dream about feeling warm in a pretty place.  What do you think?

I have copied this post to another thread too, but will obviously look forward to all of us on this thread catching up.

big cuddles to all - 

Hi ladies

It's good to see so much information, help, caring and support on here, and good to read of positive news:)  

Virginia, and others who are in the UK, I wanted to ask a question.  I am writing as someone very close to someone who has just been diagnosed.  This person is very dear to me and as she is single and had no family nearby, I said that I would come with her to get the results of her biopsy.  As someone of very calm mind, she wasn't really worried, but due to having a very hard year, actually said yes she'd like to take me up on the offer to come with her.  Anyway, we went this morning, and the result was bad news, a breast cancer.  

The consultant explained that the tumour is grade 3, and explained that until they do the lumpectomy, they will not be able to determine if the cancer has spread to the lymph glands, and in the next sentence then said there is no urgency in terms of getting the surgery.  Obviously my friend was in shock and I was, but was trying to remain calm for her and also to ensure that I could take in as much information as possible, as I was sure she'd be more in shock and perhaps not take anything in.  The consultant said the surgery will be done in a month, but all day today I've seen that grade 3 tumours are the fastest growing and as cancer spreads, it seemed nonsense that waiting a month doesn't make a difference.  We went for her to get her bloods done today, and she'll have an MRI next week, but I want to make sure that this is accurate, as it is easy for someone who is well to say things aren't urgent, but to someone who isn't well, and to those close to them, this is not the case.  I realise as they explained that people need time to adjust, but there will need to be an adjustment either way, and I wondered if anyone could share their experiences/ knowledge with me.  I, as many people I am sure, feel somewhat helpless in so far as I can be there for my friend, and I will be 100%, but I also want to be able to be the one not going through this, to take advantage of this and maximise having the emotional energy to find out the REAL implications of waiting time.  

They have already said that she will be given chemo and perhaps radiotherapy on the breast, and depending on the positivity or negativity of the tumour, will also have hormone therapy, or not.  

She just last year was nursing her mother who unfortunately didn't pull through, and to be faced with this diagnosis adds to her fear and shock.  She was apparently also told (and her sister) that they type of breast cancer her mother had didn't increase their chances of getting it.  I should probably add that she is 39 and has had no children.  

I have been in shock myself all day, and also feeling a mixture of feelings as it is not me, but I wish that it hadn't have been her, after the terrible time she has had all year, her mother and several other things.  I am determined to get all of the information I can, and I know if it was me, I wouldn't just listen to a consultant saying a month doesn't matter, when they've just said they don't know the prognosis until they do the surgery.  

I hope this is an appropriate place to write as I myself am not the person seeking treatment, but it seemed that people unfortunately having to go through this, would be better informed than a defensive consultant. I should also add that we too are in London, so it would be interesting to hear of whether this time frame is the norm in the US and elsewhere.

Thank you and fingers crossed for you all.  

K 

Welcome home Virginia -hope it goes ok today.

K34 I would say that a grade 3 tumour should be dealt with soon-they can tell if its gone to the lymph glands by digital ultrasound- mine showed up clearly   and I would say that the biopsy  MAYBE  has disturbed the cancer and there is no telling where it will shoot off to.Here it all gets done quickly-I had mine two days after the mammogram .

You girls in the uk need to do a bit of shouting -a mammogram every 3 years is not good enough-my cancer developed and spread in a two year interval .

Good luck to your friend

Anna