DEJAVU, here I go again, all too soon

[Guest user]

Hi Deb

So sorry about your bad news. I just wanted to comment on prognosis as this must be so awful for your to bear. Apparently statistically Oncologists are more often wrong than they are right about prognosis. We used to have a forum member who was given 3 months to live and lived a further 2 1/2 years. I myself was given a sell-by date of 2 years and that was 3 years ago and I still consider myself to be 'going strong' now, and I know there are other members like me. Herceptin didn't work for me either, so I know what a blow that is. I hope that your new treatment works really well, and that there will be further, kinder treatments for you in the future.

All the best
Linda

[Guest user]

Hi everyone

thanks for the support and kind words - its a shit thing to have to say thats its nice to know people really know what we are going through.

Sharon - i too wasnt told about DLA until i finally got a Mac nurse 2 weeks ago(no one told me about Mac nurses either). I also have been entitled for at least 3 months and its disgusting that it cant be back dated. I am sure things would change if whoever it is that gets to make these rules ends up with cancer touching their life one way or another. I only have 10 months left to live - that money could have bought me the holiday of a lifetime before i`m to ill to enjoy it!!! its just sick making isnt it?

How are you finding the Paclitaxel? i had first one on thurs = on weekly treatments too but i didnt have good response to taxotere coas my tumor got bigger through it(even tho i supposedky didnt even have a tumor cos it was meant to have been removed!) so dunno how it`ll go. In bed laid up at the mo trying to summon up the energy to get up and can only be arsed to type one handed so apologies for the mistakes!

hope you all feeling ok and a bit more positive than me at the mo`.
take care

deb

[scottishlass]

Hi Debracat and Sharon, I am so sorry that things are so difficult for you at the moment. You are much younger than me and I do not think I could cope if my daughters were diagnosed with BC. It just doesn't make sense why so many young women are being diagnosed. When I was, way back in 1989, I was one of very few younger women dealing with BC. Life is just so unfair. Hugs and lots of support being sent yuur way.

[jbug]

Wow, that is just such a kick in the teeth...I really feel for you. Have they said whether the 2 that show now may have been hidden behind your large previous tumour?

Sending you lots of hugs and so sorry that you have to go through it all again so soon!

Paula x

[scottishlass]

I wonder if the benefit you are talking about is DLA Disability Living Allowance? If so I urge you to apply for it if you are entitled to it. It has made such a difference to my life. I needed help to complete the form as it is quite lengthy. You can get help with this though. I hope you have applied for a blue badge too. It means that I can use my car much more therefore to the things I need to do without totally knackering myself. If anyone wants more info please PM me.

[Guest user]

Debcat - so sorry to hear that things have got even worse...:(

I really hope that the new chemo works brilliantly for both you and Sharon and is kind to you with side effects...

Take care

Theresa x

[Guest user]

Hi Debcat

Just wanted to let you know I'm thinking of you.

I have posted stuff under 'Herceptin not working for me'.
Today was the start of my first dose of Paclitaxol. I will be getting weekly doses. I have been given this as I had great results with Taxotere,they said I should respond well.

I also agree that lack of info is shocking. I got told yest by McMillan CAB that I should have been getting a benefit from April 09 which no-one told me about. I was also told it can't be back dated. I think its such c**p we are put thro and I get no support from the Breast Cancer nurses, Onc Unit are really good but don't know the ins and out of benefits which the nurses do.

I do hope you got on ok with chemo again. I really hope your get a result from this, I know 2 women who weren't given much hope but then after few doses of this their tumours shrunk, 1 girl is on Herceptin for life.

Hey and as you can see from my profile pick I will also be losing my lovely new do, it's a bit longer now. Oh well I'll do anything to get better/have hope, it's only hair.

Hugs and kisses to you.
Sharon xxx

[Guest user]

Not on here often so sorry for taking absolutely ages to respond.

Thanks so much for the kind words - i do find myself ranting quite a bit!!! But then again i was like that before cancer so not much has changed Ha Ha.

i have had more bad news since last post - on 22nd December my christmas present was that i was told i have less than 12 months to live! Great.

tablet chemo for 3 months has not worked and now they are putting me onto Paclitaxel - another strong chemo that will make me lose my hair again - only just got it looking nice too. i have weeping skin mets that are even getting a bit odourous whichis so damn embarrassing. Still working full time to make ends meet and have only just got a MacMillan nurse as no one at the hospital had told me i could have one! 5 months after being diagnosed secondary! She is fab and has told me i have also been entitiled to a benefit that i knew nothing of but cant be backdated so i am rather peeved at that too. Does anyone else find the lack of information given to them is diabolical? i have found far more info on everything on the MacMillan and Breast Cancer care sites than anyone has provided me with.

right now i feel like a guinea pig and that the oncologists just dont know what to do with me so just keep trying this and that with no actual faith in what they are doing.

I hope all of you are doing well and thanks for the support. its just a damn shame that any of us are in this situation.

Good luck ladies
x
x

[Guest user]

Hi Debracat
I too just wanted to let you know that I'm thinking of you - you are in a cr*p situation and you need to be able to rant - it'll help you to work through your anger, which is the LEAST you deserve
please keep posting
love, monica xxx

[Lulu34]

debracat

i just read your message and wanted to say how sorry i am for your situation... just wanted to let you know i was thinking about you and not just read and run.

feel free to rant away thats what the forum is here for....

love and hugs

Lulu xx

[Guest user]

Hi Tracey
i can totally say i know what you are going thru. i`ll just run thru my case.
Diagnosed July 2008 with 2.4cm grade 3 aggressive HER2+ tumor with 6 of 16 lymph nodes affected. i was only 37. hardly drink, dont smoke, size 8, vegetarian, exercised 3 times a week at gym, pilates and body pump and no family history! had lumpectomy in Aug 09 (despite asking for mastectomy - was told i didnt need one) started chemo oct 08, had small lump throughout but NOBODY examned me thoughout chemo and i thought was scar tissue as i had been told by surgeon that all the tumor was out with enough margins so hadnt been worried (if i had been told there was ever a chance of this happening i would have been demanding that someone examine me sooner), 2nd lump seen on last chemo day and referred back to surgeon who then admitted that the margins were only just clear and that they had debated at the time of first lumpectomy whether to get me back for a full mastectomy!He also said he had never seen a recurrance so soon in his whole career (he retired halfway thru my treatment so that tells you how long he had been in the business!. had 2nd lumpectomy in Feb 09 (again despite asking for mastectomy) 2 more tumors found and so had to have full mastectomy in March 09. Was due to start radio in May 09 - got new lump but this was completely ignored despite being checked out by my oncologist who said he `was not concerned at all` given my history i think they should have been more thorough. had radiotherapy and started on herceptin - neither have worked and i have skin mets so bad i can hardly even wear my bra. i also have spread to lymph nodes behind sternum - which cant be removed and possibly to my lungs. Possibly????? what the hell is that supposed to mean? started new chemo today and carrying on with herceptin (even though it clearly isnt working for me) and cant remember what life was like 15 months ago when i was healthy! its so shit - and i am so bloody angry and bitter - i really feel tha tif theyd given me full mastectomy in the beginning i may not still have cancer. i am so sorry for the rant but i am having a bloody bad time!!!! 😞

[Guest user]

Hi Tracey,
sorry to read of your recurrence.
I was so shocked when my own IBC reappeared before the end of rads. Difficult not to get upset when we've been through all the treatment and it comes back at us so quickly.

Hope all goes well with your rads,
Take Care,
Jackie xx

[Guest user]

Hi Sharon

So sorry to hear of your recurrence so soon - it's really tough. I can sympathise - I had a mastectomy in July after developing IBC earlier in the year and undergoing chemo - the cancer then returned around the edges of the mastectomy scar in two places, plus one in my chest. More surgery in mid Sept and am now undergoing Radio Therapy which, fingers crossed, will work. It was shocking when the cancer reappeared.

Tracey

[peacock]

Hi Sharon

So sorry that you are going through this again, and so soon too.

Lots of hugs

P xx

[Guest user]

Hi Girls
Just back from Dr Dunn, she has had meetings with other Docs at beatson who all agree that this bugger should be cut out first, so now see Mr Murphy tomorrow @ 11.10 to see if he can operate next week, my opinion it's too big but will wait to see what he says.
If it is the case then it could have been done last week or this week!!

Oh and I'm a rare case.
Apparently there is a pill I could try aswell as chemo, can't remember the name I did ask 4x, she has written to Glaxo smythcline to see if they will authorise it on compassionate grounds, if they can't then she will have to write to the government. It's aal about money, there are so many drugs they can't get on their budget.

Although I still don't know what is happening, I will be getting either Op or chemo next week

Bye for now

[Guest user]

Hi Sharon,

Another IBC lady here.

So sorry to read of your latest dx, it beggers belief.
I had a tiny local recurrence on my scar line which appeared during my rads, had to have a WLE within 3 months. I was so shocked.

Thinking of you,
Love
Jackie x

[Jellylegs]

Hi Sharon, I really should not be here either (I'm alot older than you) but felt I could not go without saying how sorry I feel for you at the moment.You've not even had chance to recover before you've got to start all over agiain. You are in my thoughts.xx

[Guest user]

Hi Sharon

Just wanted to say that I can sympathize (and to a limited extent empathize) with how you are feeling, having had bc twice.

I think we, quite rightly feel that we've been there, done that, and got the T-shirt and are entitled, at the very least, to a bit of a metaphorical breather. So to be back on the cancer treatment treadmill again, but particularly after so short an interval, must be devastating.

I do hope all goes well for you.

X

S

[Guest user]

Thank you monica and Val for your comments means alot xx

[Guest user]

hi Sharon, just to let you know, you are always in my thoughts, you are such a lovely person and cant believe you have to go this crap again.
looking forward to catching up with you again.

love n hugs

Carol xxx

[scottishlass]

Hi Sharon, Like Monica, I just wanted to say that I am sorry you are having to deal with this all over again. (Monica is a lovely lady who despite going through chemo herself just now is still able to reply to your post and offer you support). I have been dealing with the effects of Bc for 20 years now but still remember the shock of dianosis and can imagine the turmoil you are now experiencing too. Rooting for you and sending hugs through cyber-space, love Val Xx ( Scottishlass)

[Guest user]

Hi Sharon
just wanted to wish you well - my experience isn't the same as yours - recurrence after mastectomy but 12 years later, but I do know how sh**ty and heart-sinking it is to be told the b*gger is back. I'm sorry you haven't had any decent time in between, thats really crap. I'll be thinking of you,
take care, be kind to yourself, and best of luck
Monica

[Guest user]

Theresa Yip they have had lots experience with IBC, they were shocked as this seemed to happen couple days after Rads

Find out on Thurs what chemo I will be on and when I will be starting, hopefully next week as it's growing fast everyday!!

Sharon xx

[Guest user]

Sharon - again so sorry that you are going through this again...:(

I am surprised that your unit have said they are shocked the cancer has come back and they had thought it was very unlikely... I also had IBC and my unit have been very clear to me that although they "hope" i will be disease free my onc fears it will return in the future... Do you know if your unit have much history of dealing with IBC...?

I hope that they are able to start answering your questions soon and that the new chemo is kind to you...

Take care

Theresa x

[Guest user]

Hi

I didn't really explain myself very well.
My mass measured 16cm x 14cm, had 4 FEC with no shrinkage then 4 Tax with herceptin, Mastectomy and immediate recon(27/04/09) and all 16 Lymph nodes removed 2 cancerous 4 had scarring then 28 rads.

This time I have 2 tumours, come to think of it not measured yet, they have said it hasn't been there as CT scans haven't showed this up before, last CT was done June. They are miffed as to why this has come back so soon and while I am on Herceptin. They are shocked it has come back again as I was told that it would be unlikely. They don't know whether to call this Primary or Secondary. I asked if they had had this before and apparently this is very similar to a few cases they have come across in the past couple months, just makes you wonder.
They have said I will be monitored very closely from now on.

Also I have no family history at all.

Debs and Caron thank you for your support it means so much
Caron - Herceptin is such a doddle compared to chemo isn't it!

Hugs sharon xx

[Guest user]

Hiya Sharon,
terrible news for you all this you probably just thought you was getting your life back!!
I am the same as you hormone- but her2+ I recently went for my results and I asked the question, what's the likely hood of it coming back?
Unlike you I had a mx first time round, and I was told if I did get cancer again (in the other one) it would not be the same as this last one it would be totally different.

Does make me wonder was you rid of all the cancer??
I hope i'm not frightening you, I don't mea to but you may want to ask them " has it been there all the time, or is this a new one just coincidence that it's the same".

I don't know your history ie how big your tumor was, and was you offered mx?
Also what chemo did you have?

I can tell you my experience my tumor was 11 x 9 cm so very very big and 2 nodes involved I had 4x4 chemo 4 EC's and 4 taxotere's then onto mx and I had recon at same time then I had radiotherapy (15) which I only finished last week and I have just had my first herceptin of which I agreed to go on the trial but I got given 18 anyway.

Hope your not too worried you can beat it were all here with you.
love Caron xx

[Guest user]

Hi Sharon,
so sorry to hear your news, could notjust read your post and run.
I am sure others in a similar position will be along soon to offer support.
I should not be on this thread as I am an older women but I do stray over here every now and again.
Thinking of you and wishing you well.
Love Debsxxx

[Guest user]

I am 35 and single

1 week after finishing Rads and looking forward to going on hols I got my first 3mth check up, 2 lumps found and biopsy taken, day before flying out I was told I have cancer again, 4 weeks short of a year to the day I was diagnosed before. (22/9/2008)

Today saw surgeon who said cancer is same as last time, Hormone negative and HER2+, they can't understand why this has happened as I finished chemo in April and been on herceptin since Jan (actually had another dose on Mon).
Good news is it hasn't spread anywhere else, it's just contained in the breast, I see oncologist next thurs for Chemo plan.
I didn't think for one min I'd have to go through it all again so soon. I will get mastectomy but no recon at moment due to the fact the cancer came back so quick, they need to be able to monitor me very closely from now on.

Feel ok for now as had time to let it all sink in and got answers today to questions that where swimming in my head.

Anyone else had same thing?

Hugs
Sharon xxx