Oh Shell what devistating news, had fingers crossed for a very different outcome for you.
Surely they will try a different chemo for you??? Just because one type didnt work well for you doesnt mean another wont does it?
I hope your bone scan and ct scans come through quickly for you, so you know exactely what you are dealing with.
You probably wont be posting for a while while you try to get your head around this latest blow, so just to let you know I will be thinking about you lots and praying for a bit of good news from your forthcoming scans for you. Keep us posted if you feel up to it anytime, will check in again soon.
Sending you a hug
Shell - I am so sorry to hear your news... I was also diagnosed with IBC last May...
Really don't know what to say other than send you a heart felt bucket load of love.
Thanks for all your supporting words,
On friday my surgeon did my biopsy and told me the cancer was in my chest wall,skin,lymph nodes and the blood stream indicating one of my organs is probably infected. I have pain in my kidney so im on pain killers at the mo, Waiting for a CT and bone scan date.
He was very honest with me and said as my chemo failed,im triple neg and i have IBC they are running out of treatments for me and i have a minimum of 6 months to live..
Thinking of you all.
Hi shell, sorry to read this development. I am thinking of you for Friday, at least they are getting you seen quickly this time, not that,im sure takes the worry away from you at this time. Once again I have everything crossed for you. Good luck with Friday, will check in again to see how you are after then. Sorry I cant find the right words to help you...but I very much doubt there are any anyway.
I've just caught up with you on 'hair loss'. I'm so sorry, you're having such a difficult and worrying time. I wish I had words to comfort you and your family right now. All I can say is that you are in my thoughts and prayers.
With love to you all, Kathy
My scan turned out to be for measuring my chest ready for rads, i was led to believe it was to look at my 2 swollen lymph nodes and my red patch which seems to be getting bigger..
I ranted and raved until they let me see an onc.
The onc found a hardening just above my mx scar...he said it looks like the cancer is back...likely to be in my chest muscle and neck nodes.My red patch??? skin mets..
I am booked in to have a biopsy on friday so should know more then,
i also need a contrast ct scan which will be within the next 2 weeks..
I have my CT scan date....10th March....
I wish it was sooner, i did ring the hospital to chase it up but thats the only appointment they have....
Speak to you soon..
Well i went to the doctors with my 'orange pips'!!!! and he checked me over for infection,mouth,ears,teeth,eyes....there was no infection any where so he suggests i have a CT scan to see what these pips are.Im just waiting now for a date to be seen, i wish they would hurry up....In the meantime i have been keeping busy by painting my sons bed room..
Hope your all well, i will let you know when i have any more news..
Oh Shell, it must just feel like one thing after another for you at the moment, I do hope that the 'orange pip' turns out to be nothing to worry about, although Im sure you are until you have had it checked out and some answers. I have everything crossed for you, and hope that you have been able to be seen straight away today.
Will check back, let us know how you are doing, you are in my thoughts. xx
I've just replied to you on another thread as I'd lost this one until today.
I'm glad you are getting this new lump checked out quickly and have everything crossed for a good outcome for you.
As I said on the other thread I'm on my 3rd recurrence of skin mets, something very common with IBC. However my latest CT scan was clear so in all probability my original chemo worked as my organs are still clear 3 years on. I am hoping the same can be said for you too.
I will look out for your post to see how you get on and in the meantime send you love and gentle hugs.
Thanks for that information,
It was the surgeon, Ms Mcneill from the Marsden who told me my results and that the cancer will prob come back within 2 years.
Today i have found a lump above my coller bone, i have felt it before but its more noticable now. Its the size of an orange pip.
i will try and get it checked out tomorrow.
Hope your feeling well.
Hi Shel, ive been away this week, just got back today and came on here to see how you are. Im so sorry to hear what the onc has told you. Was it dr Murray that told you this news or another onc from the london hosp? I am just wondering how they can say that there will still be cancer in your body, as my understanding was that the lymph nodes were the first barrier to stop the cancer from getting into your system??? If you havnt had a secondary diagnosis how do they know that there is cancer in your system? Also just as a matter of interest to you, I had my first Herceptin at home last week and as the nurse was here for 2 hours I really went to town on her bombarding with questions etc. The one I asked which could be of interest to you was that I was still worried that my 2nd chemo (taxotare) didnt shrink my cancer so they took me off it, so I was asking if they would consider giving me any further chemo as a back up??? (silly question probably but if you dont ask, you dont find out) anyway she told me that it would be unethical to give any further chemo as 'back up' and no onc would ever do it, but the interesting bit, was that she also said just because a particular type of chemo hadnt worked on the primary cancer, didnt mean to say that it hadnt worked on any 'floating' cancer cells within my body. Basically what im trying to say (not very clearly I think!) is that the chemo could treat cells elsewhere in the body even if it hasnt worked on primary.
I dont know if there is any truth in this or not, but I am choosing to believe what she says as I also had some lymph node involvement (6/21) and it makes me feel better.
I dont suppose that there are any words to comfort you at the moment (I would say them if there were), only remember that she is working on statistics and she can predict no more then the next person if you will get future cancers any more then I will or anyone else who has already had it.
Are you having your rads at Lincoln hosp?
Thinking of you and sending hugs to try to make you feel better.
Just a quick update on my op results.
As well as removing my tumor the surgeon removed 22 lymph nodes...
19 of those nodes contained cancer......
She told me that because my chemo had failed and the number of nodes involved ,cancer will still be in my system.
She says i am likely to get a secondary cancer in one of my organs within the next 2 years,if i go beyond 2 years i will be a lucky girl.
There will be no cure for me when secondary cancer strikes just treatment to prolong my life......
Needless to say im gutted........This wasnt hat i was expecting...
I am beginning to accept the left side of my chest is flat, i havnt looked in the mirror naked yet and still sit in the bath with a vest top on, as i still have dressings on its easy to ignore.
I go to see the surgeon tomorrow for my op results, hope they got all the cancer out.I still worry that it might of spread....
My chest and under arm is still numb, i am doing my arm exersises and am getting more movement in it.
im waiting for an appointment to see my onc so we can get on with the rads appointment.
hope your all well
speak to you soon
HI Shell, Ive been thinking of you and coming on here to check to see if you have posted. So pleased to hear from you, and sorry you have tonsilitis, Ive had it before and its very nasty, let alone with coping with mx and all the emotional stuff that goes with it. I understand how you feel about keeping yourself within your comfort zone, other people can wait until you are ready to face them. Everyone is different but I found my way through it by thinking that this was a sacrifice I had no choice but to make if I was to be there for my kids, and it did become easier, I hope it does for you too. Im sure it will but at the mo its still very raw.
Take care of yourself.
My hubbies doing a great job in caring 4 me and the boys are being good too.
Im just not up to meeting people yet.
Don't worry about other people at the the moment - take your time and concentrate on yourself. You are going through so much at the moment, it is bound to take some getting used to. I'm glad that the op went well, although you must feel awful now with tonsilitis. I hope you have good people to look after you so that you can rest and take things gradually.
Take care, and good luck for the 17th,
Hi girls and thank you all for your well wishes.
Im home and i feel like crap, only because i have now got tonsillitus........
The op went ok and i get my results 17th Feb..
I do feel down and want to hide away from the world,which is what iv been doing.
I know people are going to ask me how i am and i just cant say "im fine thanks"
I want to say "how do you think i feel? iv been forced into losing my breast,i cant bare to look at myself, i cant accept whats happening to me...Part of me has been taken away and im finding it hard to accept"
perhaps it is best that i dont have contact with the outside world just yet..
Hi Shell, sorry youre op got delayed due to the snow. Hopefully you have now had youre op and are on the road to recovery - hope so, thinking of you and hoping that those drains are soon out so that you can come home and recover properly.
So sorry snow caused problems, Thinking of you and hope all goes well tomorrow.
Just wanted to wish you luck for the op tomorrow, hope I haven't missed you but probably you won't sleep much tonight.
Try not to worry, not long now and that awful tumour will be gone, so will the pain. The pain after the mx is not bad at all, much better than I expected, in fact nothing worse than a bit of discomfort.
Take it easy and hope you get a good rest after the op
Sorry, internet went down.
I'm looking forward to getting my pre chemo energy back.
Moocow, I've had the same chemo as you. I also found the taxotere difficult at times. Just hang in there! How many and what animals have you got.One lively large young dog is enough for me.
Hope everyone is doing well and coping with the weather.
Shell, good luck for tomorrow. Looks as if its finally going to happen. I'm one week ahead of you and I'm doing just fine, and I'm sure you will too. I will be thinking of you.
Julie, I've repainted my nails, they don't hurt but they look dreadful, discoloured and bumpy. I think I'm going to lose them.I know what you mean about the eyelashes, my eyebrows are sparse too. I bought false lashes but haven't used them, have applied eyeliner thickly and have convinced myself it looks ok. I haven't been out walking since I came home but I
So pleased it's tomorrow Shell! Got all fingers (and toes!) crossed for you. Best of luck
Moocow - sorry you are suffering with the chemo. Are you on the FEC or taxotere now? There is a thread on tips for chemo which might give you some ideas to help if the next one proves tough too.
I had a full left masectomy at the age of 41 last sept 08 now having cemo 3 fec 3 taxater last one hit me badly but still went to work but feeling very lonley as no one to talk to who has gone through this like me hope this site will help - 2 kids husband and loads of aanimals keeps me busy love to hear from you
Hi ,its me again.
My operation is going to be done tomorrow afternoon.......lets hope it doesnt snow.lol.....
i will be going to the marsden in Sutton,Surrey.
Geewhiz- im off the morphine now because i had a bad reaction to it. Im still trying to manage the pain with Tramadol, but they dont seem to help much..
fingers crossed for me ladies......This op must happen tomorrow...
(if it doesnt im going to go insane)..
Shell, you must feel absolutely gutted and so frustrated (not to mention exhausted after the journey). I hope you hear about your new date soon. Mind you , better to have the op when the hospital is fully staffed with its regular staff I guess, although that's not much consolation. How are you pain-wise now that you have come off the morphine?
Kathy, good to hear you are home and reasonably comfortable. Are you going to put the dark nail polish back on again? My fingers and toes are still not right (sensitive and throbby), so have repainted mine. Good news is that my legs are SO much better - I can walk a good distance at a good speed now, so that I am actually more mobile following the op than before! Glad to see the taxotere symptoms finally beginning to go - do you think I may see eyebrows again anytime soon?!
Hi to Smiler, Ruby, Peacock, Ness, Jan, Jackie, Cecelia and anyone else reading - good to know we are not alone.
Hi there ladies...
My op was cancelled due to bad weather....We made the 3 hour journey that took 7 hours because of the snow but the hospital staff didnt turn in for work......Typical...
We were told to go home...not impressed.
I have to wait now to be contacted with another op date....
I hope its soon...
it has taken me ages to get into the forums, its all new and i dont like it!!!!!!!!!!!!
Going to catch up on all your posts now.
thanks for all your support.
i will let you know of a date as soon as i know.
I came out of hospital yesterday, after Bi lateral on Monday. I feel comfortable, but tired. The op went ok, but suffered a little after, due to dehydration and low blood pressure. I received some blood on Tuesday and felt much better. I have been taking tablets for high b.p since april. They were obviously doing too good a job. This was easier than chemo. I've felt a little discomfort,but no real pain.
Glad you're progressing well Julie.
I will be thinking of you on Monday, Shell and hope all goes well for you.
Thank you all for your good wishes.
Glad everyone is managing to find this discussion. Very encouraged to hear your story Jan - when did you have your op?
Shelly, I shall be thinking of you on Monday and wishing you all the best. As Ness said, loads of black marker pen - the biggest problem is getting it all off again afterwards!
How is it going for you Kathy?
I'm in the lull between surgery and rads - have 2 radiotherapy planning sessions on Feb 6th and 19th, then start the zaps on 20th. Mind you, its hardly a lull as I seem to have lots of appointments just now, and relying on friends to do lots of ferrying around until I can drive again. After chemo and the op I definitely feel that I'm in the home straight now, just hope that my skin holds out for the rads!
Lots of love to all,
Hi shell, just managed to find this post for the first time, not getting on too well with this new site! But thinking of you for monday,good luck. PS. My surgeon saw me beforehand and put loads of black marker pen marks all over breast to be removed - he would have have to have turned blind to get the wrong one. Hope this settles your mind about getting wrong one etc!
Now I've managed to find this thread again I just wanted to say good luck to Shell for your op on Monday, 3 months to come and you'll be wondering what you were worried about!
Julie I hope you are still making a good recovery, do you know when your rads will start?
Kathy, the same for you hope you are taking it easy and not feeling too bad.
Take care all
Hello Kathy - and good luck! I've been thinking about you, sorry that I couldn't post due to the site being moved over.
Hope you are feeling well by the time you read this!
I also have been following your posts and I am so pleased you have your operation date.
I, like you had to have my chemo cut short and they then operated within a week of stopping. I had A.C. and Docetaxol. The A part of A.C. has weakened my heart so they now have stopped my Herceptin!!
The thought of the op. is traumatic but the reality is so different. I was so comfortable all the time and I experienced no pain, in fact I had a really good time in hospital!! (must get out more!!)
I was in for four days and on the day I came out my daughter had a barbeque for me and we had such a laugh..
The following week I was able to go to a friends weddding and we danced all night.
After all you have been through, I know you will be fine.
Good luck Shell,
Julie- I'm glad all went well for you. I have a bi-lateral mastectomy tomorrow and it was reassuring to read how you got on.
Shell, I'm also triple negative and I've been following your posts. I'm glad you haven't to wait too long for your op.It's next week isn't it? I will be thinking of you and hope it goes well for you.
I'm off to remove the vile colour nail polish I've been wearing since the Docetaxol, then I'm ready to go. I'm not looking forward to the early start, but I've every confidence in the hospital. I hope to catch up on some sleep whilst there.
Good luck Shell and best wishes to all.
Just wanted to say to Shelleyface that I've seen some of your posts and I'll be thinking of you as I believe your operation is imminent. Like some of the others have said, ask for your breast to be marked up so that you know for sure they are operating on the correct one and that way you don't need to worry anymore.
Geewhiz - not sure if I've already posted, but I had 6 lots of chemotherapy before my operation - 3 lots of FEC and 3 lots of taxotere and herceptin started with the taxotere - the chemotherapy worked very well, shrinking my tumour down from 4cm to 7mm.
Best wishes to you all
Hi Everyone, hope you don't mind me joining in your discussions. I had chemo pre mastectomy as was misdiagnosed originally and the tumour had got very large. Had 6 AC then op then rads and then Taxotere as 4 lymph nodes were positive! I have to say, like you Julie that I felt a lot better after the op than I thought i would and wasn't as upset as I imagined, think it was the relief of having had the tumour taken out!!! Also had a big permanent marker arrow put on my arm ( did manage to get it off!)so it must be common practice!!
Shell it's so hard leading up to surgery isn't it? I found it hard to concentrate on anything else. I hope all goes well for you.
Oh Shell, I really feel for you. If its any reassurance, I found looking at my new shape much less distressing than I had feared, and in fact in a funny way it is the remaining boob that looks odd to me now.
And just before the op, the surgeon drew a great big arrow in thick black felt pen on my left shoulder pointing to my left boob, so no chance of any mistake!
I have started having nightmares about the surgeons taking the wrong boob off....I'm so scared of what I'm going to look like after my mastectomy...
Hi Shell, pleased your date has been brought forward, it will soon be here.
Will be thinking of you.
Great news Shell - I'm sure the time will pass quickly now you have an actual date. Hope the painkillers are working,
The hospital have just phoned and changed my op appointment....Now its going to be done at the Surrey Marsden and on 2nd Feb, Not so long to wait now..Dont know where this hospital is but hubby can work that one out..
Glad you finally have your date Shell,
Will keep popping back for progres reports!
Thanks peacock and Ness1
I am going to start and pack my case now. I'm glad i have a date to work to i can organise things for the boys and hubby now.I wont do it yet though until i have the hospital letter and i can see the date in black and white....
My boob is really throbbing this morning,it just keeps nagging away at me all the time......
Going for a cuppa now and some pain killers.
Love to you all.
For shell - Pleased you have your op date, not as soon as you would have liked but at least you know where you stand now. I hope you have a pain free and more comfortable couple of weeks before your op. I will be thinking of you on the 6th and will keep checking on here for any updates.