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Just diagnosed and wanting to talk to people who understand

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Re: Just diagnosed and wanting to talk to people who understand

I've just been for my pre op and had an appt with BCN first. I'd been feeling fairly calm up to now other than having to wait till July 12th for WLE and SNB however I saw a letter that had been sent to my gp that said the mammogram showed the lump was approx 3.8 cm whereas last week when I got my biopsy results I was told the mammogram showed the lump was 2.1 cm !!! There was a second bit of paperwork in the notes re the mammogram that said 2.1. Am now completely stressed out that the lump is virtually twice as big as I initially thought.

she tried to say that when the dr does the clinical exam it's only a guess that he thought it was 3cms but that the mammogram was more accurate however I pointed out the letter wasn't just talking about the clinical exam it also specifically said mammogram result 3.8.

she went off to ask the dr re the discrepancy and apparently he said when he saw the mammogram result was 2.1 he went to query it as he had felt something larger and the radiographer had said yes it could be bigger than the 2.1.

am now so worried as don't know what to believe and what is correct.

she said at he exact size can't be known till its removed and that just because it's larger doesn't necessarily mean it's more likely to have spread but my mind is now working overtime.

 

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Re: Just diagnosed and wanting to talk to people who understand

Not what you wanted to hear Scarlett but there is a good chance that the cancer won't have made its way beyond those 2 nodes ,the clearance is just a precaution.At least you are getting your money's worth from the NHS this year!!!
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Re: Just diagnosed and wanting to talk to people who understand

Thanks a lot for your replies, Dunnottar, Sue, Jill.

It did make me feel more 'normal' 🙂

 

Things are happening really quickly and yesterday (1 week+1 day from surgery) I got some (most?) of the results.

The MDT meets on Friday, and my BC nurse decided to call me in right away, instead of making me wait more time.

 

Unfortunately it was what I didn't want: I had cancer cells in 2 of the 4 lymph nodes they'd removed, so I have to go back and have another surgery for full axillary clearance 😞 It'll be July 6th.

I'm a bit annoyed, also because the risks of lymphoedema are higher, and the arm movement will take longer to come back, but if that's what it takes to be well and cancer-free, let it come!

 

I already did the surgery pre-assessment yesterday, and I felt like an old pro, hehe - yes, MRSA tests, yes, another blood test, no, nothing changed to all my previous answers.

 

On the positive side, I came back to my home last evening. Now it'll be a week and a half here, then 2 days at hospital, then I'll be back at my friend's hehe

And the nurse removed the drain bandage (the one that was worse for itching), and now it's out in the air healing. She also removed the big bandage, told me the scar is healing nicely, cleaned the area, and then put another bandage just to protect it. It didn't look as bad as I was fearing 🙂

 

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Re: Just diagnosed and wanting to talk to people who understand

Getting away for a few days sounds like a good plan,2 weeks can seem like a very long time when you have this hanging over you .
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Re: Just diagnosed and wanting to talk to people who understand

Hi again rs 123

 

The test they are talking about is an Onco DX test, it it great that they are prepared to offer it to you, should the benefit of chemo be unclear. It will be very helpful, even if the additional waiting for the results may be a few weeks.

I am hoping with you - 

 

Sue xxx

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Re: Just diagnosed and wanting to talk to people who understand

Thanks for the reply Jill,

i agree I just want it out even if that means having an op. At the moment my bigger fear is the worry that it has spread so that's overtaking the general anaesthetic fear! Once my surgery gets closer I'll no doubt start panicking more but I hope I just go on autopilot like I did with the mammogram and biopsies.

op is on July 12th and I'm hoping to get a few days away with my boyfriend the week before to have some relaxation.

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Re: Just diagnosed and wanting to talk to people who understand

Ps the test is Oncotype DX and there is some good information about it in this site .
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Re: Just diagnosed and wanting to talk to people who understand

Hi rs,welcome to the thread.The first few weeks after you are diagnosed are really, really hard and very anxiety provoking .The middle of the night is the worst time and dark thoughts do creep in.Just about everyone I have ever spoken to on here has worried that aches and pains that you would have never thought much about before are the cancer having spread .It is very unlikely that it has particularly if your lymph nodes look clear.Until you get the results of your op and node biopsy it is very hard ,once you know what happens next and when you will feel a lot better.I get very anxious re medical procedures too but it is surprising what you can cope with when you need to,I just wanted the cancer gone so I was gonna have that op even if I was a gibbering wreck(I talked non stop like a mad fool to the anaesthetist ...)My GP prescribed me a smal number of Valium to help get through the worst.
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Re: Just diagnosed and wanting to talk to people who understand

Hi sue

its ER+ and HER- . She explained that meant radiotherapy after surgery and tamoxifen for 10 years but also said that could change after the surgery result. Some test (doxy something) was mentioned as a possibility to see if chemo would be beneficial.

im praying for clear margins, clear nodes and vascular system so that the treatment plan doesn't change.

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Re: Just diagnosed and wanting to talk to people who understand

Hi Scarlet welcome to the forum.I totally understand where guy are coming from I found that my friends and family however well intentioned just didn't understand and would say the most unhelpful things while trying to be supportive.I felt very "abnormal" and isolated having cancer but once I found this forum and spoke to people going though the same thing I felt an awful lot better .Please feel free to rant here whenever needed,saved my sanity !!!😳
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Re: Just diagnosed and wanting to talk to people who understand

Hi rs123

Yes, nothing showing in the nodes, is a positive sign - once youo have your operation and the horrible waiting for the pathology results is over, you will know for certain.

I was provisionally a stage 1 or 2  with nodes clear and a presumed grade 2 - after the pathology results it was a Grade 2b -  and Grade 3, but my nodes were confirmed as clear. My treatment plan did change. Knowing exactly what I was dealing with - and knowing that it had all gone, was a great relief and helped me to understand and accept the treatment plan much easier, as I know that it will ensure that I stay healthy and it does not come back.

Have they told you what the receptors are? And when is your surgery due?

Hug

Sue xxx

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Re: Just diagnosed and wanting to talk to people who understand

I've not had a scan or mri. The mammogram showed lump was 21mm. The ultrasound didn't show anything re nodes so I'm taking that as a positive sign although I know that could change once I have the surgery and they do further tests. 

Im assuming that if sentinel node clear then I wouldn't have further scans. Also assuming that after surgery to remove lump and sentinel node the diagnosis could change and the treatment plan can alter. Was told it was 'provisional grade 2' 

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Re: Just diagnosed and wanting to talk to people who understand

Hi again rs123,

Most of us, at your stage of diagnosis, start to think that every ache, pain, bump might be the cancer having spread. So your thinking is understandable.

What did your biopsy results say, if you want to share them?

And did you have an ultrasound/MRI - what have they said about your nodes so far?

Only share if you are happy to, though.

Hug

Sue xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Thanks for your reply Sue, at the moment they've just mentioned the surgery as the first port of call and that if there aren't clear margins they may have to operate again or even go for a mastectomy depending on the result...... am trying to think positive and hope that one operation will be enough and that there will no further surgery/chemo necessary. only radiotherapy and tablets mentioned so far.

the breast nurse did say something about possibly having the other breast reduced in the future to even things up.

I have my pre op next week and have to go and see my breast nurse before that appointment where she said she'd give me more information re the operation and recovery and also show me photos of what to expect. Maybe the nipple reconstruction option will be mentioned then.

To be honest at the moment I'm not remotely bothered about having wonky boobs or only one nipple! Just want the cancer removing and hopefully to be told it hasn't spread. Convinced myself that all the various aches and pains that I've had over the past year aren't just down to age or the fact that I'm not very fit but are actually cancer spreading to others parts of my body.

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Re: Just diagnosed and wanting to talk to people who understand

Hi rs123.

so sorry to see you in this place - but it is full of support and help for you.

I was diagnosed with a lobulare invasive ER+ HER- and like you the 'core' of it was hiding behind my nipple. Stage 2b, Grade 3. I had skin saving surgery with immediate reconstruction, as the surgeon did not think the spread of the strands of the cancer would be so far spread. Currently going through chemo and then radiotherapy. The implant may be affected - so that will be corrected when I am completely fit again later this year, should the implant nop cope with the radiotherapy. The sentinel  node biopsy is a good thing. When all the results come back from pathology and your nodes are clear, that would be really good news, as it does make the likelyhood of the cancer having spread very much less.

I presume, that because of the radiotherapy that you are not having an immediate reconstruction. May I suggest to discuss with your surgeon, whether he could please construct a 'nipple' from your skin, whilst operating. My surgeon is an oncoplasti surgeon and did this. Simply fantastic - when all is done - a bit of 'colouring' in - tattooing the relevant colour back on - and no one would know the difference.

Of course you will feel up and down - and waiting for the pathlogy results afterwards is really challenging.

Ypur feelings and worries are so understandable. 

The operation is not as bad as many think - as you have never had one, I can assure you that they will take great care of you and wll make sure you feel comfortable with everything that happens.

Don't think dark thoughts - I know it is easy to say - treatments have come such a long way. And as a breast caner patient - you are treated like a VIP buy the NHS. I cannot fault my treatment - I know I could have no better anywhere else.

Let us know how you get on.

 

Hugs

Sue xxx

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Re: Just diagnosed and wanting to talk to people who understand

Hello all,

I've just been diagnosed with invasive ductal, ER+, HER-. I'm due for breast conserving surgery on July 12th - forgotten the exact name but am losing my nipple as lump is just behind it. Also sentinel node removal.

was given the choice of mastectomy but Dr said I was suitable for the breast conserving surgery. hope I've made the right choice!

It seems the best outcome would be this surgery then radiotherapy then Tamoxifen for 10 years however I know after the surgery it could all change and there could be further surgery/chemotherapy depending on what they find.

i seem to be very up and down at the moment, quite calm one minute then the next I am convinced that the cancer has spread everywhere else in my body either via lymph nodes or bloodstream! I'm a pessimistic person at the best of times so am struggling to remain positive. Am dreading the operation anyway as I've never had one and am feeble at anything medical - I often faint just having a blood test!! So unsure how I'm going to cope. If the results after the surgery are not good then I really don't know how I'm going to cope, I need a switch to just turn my brain off to stop it thinking such dark thoughts.

finding these forums has been a real help as I can see I'm not only in these thoughts. It's just all the waiting!!

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Re: Just diagnosed and wanting to talk to people who understand

Hi ScarletBea,

You are not alone - and I so very much understand how you feel. It is normal, it not nice to have to feel like this and your 'rant' is absolutely justified. And it is so good to have a rant - let it all out.

Until people are in our place they will never truly understand.

You can be very proud of yourself dealing with this. No matter how many friends we have, husbands, boyfriends, partners and family - unless they have been or are in this place, where we find ourselves through no fault of our own - they cannot understand, however much they try. So apart from fighting our battles - we have to help them understand, by really sharing all we can share - warts and all.

You do not have to think about work. Should your biopsy results be - so that you need further treatment - there could posibly be another battle to fight, as it is with me.

It is so unfair - we are the ones that have this - we are struggling hard to become healthy and have to deal with things we really should not have to - and we have to fight prejudice, lack of understanding and keep up a brave face in so much adversity.

You are certainly not selfish - quite the reverse - and it is now very important that you put yourself and your needs beore everything else to recover and become healthy again.

You are neither weird nor abnormal - you are brave, strong and are starting on a possibly challenging journey. We are all here for you - we know how you feel - we have felt and are feeling like you, too.

Let us know how you get on. I shall be looking out for your posts.

Huge Hug

Sue xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Hi ScarletBea, really sorry you are feeling alone. Sounds like you have got lots of support and you will get lots more on the forum. Friends mean well when they say you will be fine. A really good friend of mine said that yes I would be OK, but there is lots to get through before you get to that OK point. I think about that a lot. I am further down the track than you and a bit older. I had a single mastectomy  with   snb. I had one node with cancer and I am having radiotherapy so not sure it always follows that there is more surgery. I think the grade of cancer plays a part too. I spent lots of time trying to second guess outcomes and you simply can't. It drove me mad in the end. But you will adjust to whatever comes next and I have found support in the most unexpected places. 

 

On the work side you will know when you feel up to working - everyone is different. It may be a welcome distraction but perhaps on reduced hours. Only you will know.

 

it is really early days for you so rant away. I had many ranty moments and will have lots more. All part of the healing process I think.

 

I hope you are managing to sleep comfortably. It really does get easier when the highs and lows of results are less frequent, but for now be kind to yourself and keep ranting.

 

Jill X 

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Re: Just diagnosed and wanting to talk to people who understand

I feel a bit alone, despite all the support I'm getting from friends - I need to vent with people who know what this feels like...

 

It's been just 20 days since my diagnostic, 1 week today since my surgery (single mastectomy and SNB).

I'm now waiting for the results to see what comes next, but most probably it'll be everything due to young-ish age (chemo, radio, tablets...)

I don't really mind, I'm expecting it, and the only thing I really wanted now was for the SNB to come clear so that I don't need further surgery.

 

It took me a few days to look at my bandages, but now I almost feel proud of the flat side: these are my war wounds, I went through war and I survived. I'm still here.

Hiding it, wearing the prosthesis which at the end of the day is so uncomfortable, is done for the rest of the world. We can't let them be uncomfortable, we can't let them realise that people aren't perfect.

They like replying to my news with the fact that they know a friend, or a friend of a friend, who's also been there and is ok, that this is very normal now, that it's ok, that... it's like a bad case of the flu?? Am I being terribly selfish when I hate this? When I wanted people to treat cancer as a serious illness? I mean, I don't want them to be fatalist, far from it, but I'd like it to receive the respect it deserves.

 

And I'm not ready to let it go. I haven't really processed it properly.

A work colleague/manager today replied to my news that all was going ok with "I hope you don't need more treatment". I know he means well, but at the same time I can't help but think he just doesn't want to be without this headcount for longer than a couple of weeks (it's been 9 days since I stopped working). But I can't think about work, I just can't.

 

Thanks for 'listening' to the rant - I hope I'm not as weird and abnormal as I'm feeling right now Smiley Sad

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Re: Just diagnosed and wanting to talk to people who understand

Great news, Jill... you must be very relieved!  xx

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Re: Just diagnosed and wanting to talk to people who understand

Great to hear this news Jill. xx

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Re: Just diagnosed and wanting to talk to people who understand

A bit of a marathon for you Claire ,hope you have something nice planned to celebrate finishing your treatment .
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Re: Just diagnosed and wanting to talk to people who understand

That's great news Jill. A real milestone passed. Waiting for results under any circumstances is so stressful. So pleased for you.

3 more rads left for me, then three monthly check ups. I see the surgeon in Sept to start talking about reconstruction. 

Love to all

claire xxxx

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Re: Just diagnosed and wanting to talk to people who understand

Jill1998

Fabulous - so great to hear, well - read actually.

Congratulations!

                                                    Happy Birthday

Huge hug

Sue xxx

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Re: Just diagnosed and wanting to talk to people who understand

Got all clear from my first post treatment mammogram today ,feel like a massive weight has been lifted off my shoulders .
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Re: Just diagnosed and wanting to talk to people who understand

Very sorry to hear your news Delly. Sending a virtual hug. xx

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Re: Just diagnosed and wanting to talk to people who understand

Huge hugs Delly

 

xxx

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Re: Just diagnosed and wanting to talk to people who understand

Sorry to hear about your friend Delly,even when it's expected it is still a shock when it happens and very sad to lose a good friend.Hope you make some progress when you see the specialist.
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Re: Just diagnosed and wanting to talk to people who understand

Hi lovelies

Jill - four weeks -that SUCKS!!!!

Tina - hope your skin continues to hold up

 

I have an appointment with the Gastro guy this Saturday, but still haven't had the more detailed liver scan. Had very sad news this week, my friend from my younger Bournemouth days has died. She had a long battle with secondaries, but finally had a massive liver tumour, given six months, refused chemo, lasted two. Died peacefully at home. poor hubby Phil. Rest in Peace Mandy.

Love to everyone xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Well done Tina, what a marathon eh !!!!Hope you did something to celebrate !I felt very tired for a few weeks after finishing rads and my skin really broke down but it improved very quickly.So pigged off I have to wait 4 weeks for results it's like a black cloud hanging over me ,don't feel like I can enjoy anything til I know the outcome .
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Re: Just diagnosed and wanting to talk to people who understand

Hi everyone...... Jill good to hear that dreaded appointment is done but not so good about the long bloody awful,wait for results!!! It's a nightmare the waiting! 😏

Delly hoping you're getting there regarding your health issues Hun!?! 

Yes Jill, I along with others are now finally at the end (for good hopefully!!! 🙏🏼) of active treatment. Last chemo was on the 1st April...... Took few weeks to get over this and started 15 treatments plus 4 boost treatments of radiotherapy on 19th may, last one June 14th. My skin holding up ok, but told it could worsen over next few weeks and fatigue kick in. I'm using Aveeno and had more from GP on prescription aswell as a soap replacement and some bath stuff for when I can have a bath! In agony with my back though think I've pulled it again..... 😖

Seeing my oncologist Tuesday for skin check up and see how I'm doing on meds started last week. Hope everyone else doing ok xxx Tina

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Re: Just diagnosed and wanting to talk to people who understand

Hi Robin,

 

thinking of you - your op is now done and you are in your recovery phase. I hope it is going well for you. It took me three weeks to get back to near normal - 

 

At a guess you may also be fretting about your impending pathology results, and if you are being treated at the Park Centre, I guess that appointment is now looming. It is a worrying time for many. Should they tell you at your appointment that they only have your final results provisionally - still ask them what they 'provisionally' are to help with the stress that you may be experienceing. In my case they were provisionally and as a favout to me they e-mailed me the final pathology report about 4 days later.

 

Please feel free to contact me via Private Message (you would need to enable it)  - I am reasonable local to you and am happy to share my experience with you as well, of course as supporting you.

 

Hoping all is well - you are in my thoughts

 

Hug

Sue xx

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Re: Just diagnosed and wanting to talk to people who understand

Yes I was wondering about Robin hope she is ok .Just had my first post treatment mammogram ,brought lots of emotions back that I would rather not experience again.Guess what a 4 weeks wait for results how cruel is that ???Are you getting to the bottom of your health problems Delly?Im thinking everyone must have finished their treatment now ???On to the next step eh ?
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Re: Just diagnosed and wanting to talk to people who understand

hi everyone,

Robin - how did your op go? Please let us know your results when you've received them will you.

JenJen - how are you going on??

 

Hope those of you that have had or having are all doing ok after ops and with your chemo/rads.

Loadsa love Dellywelly xxx

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Re: Just diagnosed and wanting to talk to people who understand

Good luck with your op Robin.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Robin - I am being treated in Brighton, too!
Although sorry to see that you had to join us - so great to see someone, who is a bit more local.
Sue x
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jill, I think my radiotherapy will be Sussex County (Brighton). I guess it's a question of seeing first what the result of the biopsy is before I'll know whether there's going to be any more surgery or whatever. Operation is tomorrow. Finally - it's been a long wait! 

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Re: Just diagnosed and wanting to talk to people who understand

Hi robin, I'm lucky to have very good travel insurance which I pay into through work, because it's a big corporate policy in covered when I next go away for any pre-existing health issues xx
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Re: Just diagnosed and wanting to talk to people who understand

Hi and Sorry peeps, catching up.

Bazza - a belated happy birthday. Hope you had a lovely day and evening. Glad to hear Nikki's doing well.

Robin - a warm welcome from me too. I hope you can reorganise your hol. Sorry for your diagnosis and the complications it's created.

Love to everyone

Delly xxx 

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Re: Just diagnosed and wanting to talk to people who understand

I think there may be some flexibility re start dates for radiotherapy if it just a matter of a couple of weeks,some people need more than one surgery to get clear margins or have node clearance there must be some room for manoeuvre .Each hospital has slightly different waiting times also .Where will you be having your r/t ,other people on the forum may be able to give you some idea of waiting times at that particular hospital.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Amanda, thanks so much for that info, really helpful. I'm sorry your treatment 'path' turned out that way, it must have been awful to think it was going to be relatively straightforward and then not. From what everyone is saying here is sounds like we may end up cancelling Sept, even if means in the end I might have been able to go... we can always go next year and as you say the health issues come first.

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Re: Just diagnosed and wanting to talk to people who understand

Hi Jill - thank you, yes we will leave any holiday decision and insurance claims as late as possible. The Sept holiday can't be moved easily because we're stopping in so many different places and we've booked all the bits of travel & accom separately , some of them non-refundable/non-changeable. Those timescales are interesting - it could be that my treatment will be exactly when I'm supposed to be away. Maybe the treatment dates are negotiable?? I will talk to the BC nurse about it. Anyway, I shouldn't be worrying about holidays but rather being glad to be alive! lol

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Sue - yes I will discuss with the BC nurse. Hopefully results after the wle won't take too long ...
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Sissy.. there's been mention of radiotherapy but not chemo at the moment, but I guess that depends on what they find. Did you have trouble renewing your travel insurance?
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Re: Just diagnosed and wanting to talk to people who understand

Only 40 Barry! Your just a baby still 😉 I turned 48 last week 😱 Good to hear Nikki is doing well and back at work , best of luck with your pile issue!! 😳 And a very happy Birthday X 

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Re: Just diagnosed and wanting to talk to people who understand

Awwwwwwww, I think you're ALL sooooo bloomin lovely and fantasticly brave.

Hope you all get your employment issues sorted to your own benefit.

I don't have such issues, having been long SELF employed. But part of me wishes I did, in that I'm not employed so don't have the same protections - umph.

Love yers

Dellypoos xxxx 

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Re: Just diagnosed and wanting to talk to people who understand

JenJen - Yeh, isn't it surprising how quickly one/ you /me/ we can recover from having a boob or two removed. Am soooo glad you're doing or sounding to be doing okay with it al so far l. Sounding and seeming to be isn't the same as to "being". We're all here gunning for you "babe".

Loadsa love

Delly xxxx 

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Re: Just diagnosed and wanting to talk to people who understand

I think it's 3 sessions. It's like an intrusion lol x
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Re: Just diagnosed and wanting to talk to people who understand

Oh Barry, how horrible to have such painfull treatment! Will the two do it, did they say?

 

Claire, Sissy mentioned the Moving Forward course in October but I'm not going to be able to go as I won't be able to attend the third week.... my daughter is getting married in Scotland on the 22nd October and they say "We ask that you are free to attend all four sessions of the programme" so I won't be able to go.

 

Amanda X

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Claire. Ooh Italy, have you been before? I've never been. Something for you and the family to look forward to. Who did you get insurance with? x