Hi everyone, I am 49 years old with IBC, I was diagnosed in August 2008. Had 4 months of Chemo, on December 17th I had a double mastecomy, the right side was the only side affected with IBC but wanted to save my life by having both breast done at the same time. Well 2 months later the cancer is back and has spread to the left side. I have started Chemo again, but I just don’t know what to expect. Will I live thru this, I thought for sure that having the surgery was the right thing to do and then have rad. I feel a little hopeless sometimes. Is anyone out there who has gone thru this or is going thru this?
Hi Eileen 5
sorry to hear your news I am not in your postion but I have answered to keep your posting current
Best wishes
Sharon C
Eileen - so sorry to hear this news…
I was diagnosed with IBC last may… so far so good but i know what a frightning thing IBC is… There is another poster on here called Shellyface who was also diagnosed last year and has recently found out her’s has also returned and spread.
At the moment i am probably being like you have been - worrying at every sign and twinge - i’ve recently been having alot of breathlessness and had to have a chest xray which came back all clear - but i’m still concerned if it is a sign something is starting to happen…
Has the cancer come back as skin mets…? I know there is another poster on here Mabel who has IBC and she has been having chemo for skin mets and it has been helping her…
Sorry i can’t really help more…
Hugs Theresa x
If any of the site moderators look at this thread - i’ve been wondering would it be possible to make a new IBC section like you have for the triple negative ladies…? IBC is so different to the other forms of breast cancers in some ways… and there are only a few of us scattered around the site - but it might be nice if we all had somewhere we could find each other and discuss treatment plans etc etc etc…
Hi rhapsodyangel
I will pass this on to our technical team who will look at the possibility of adding an IBC room.
Regards.
Louise
Facilitator
Hi all
Yes please, I would also like to request our own IBC section, its so helpful to talk to others in a similar position without having to go through all the topics.
IBC seems to be becoming more and more discovered.
To the original poster, just sending my thoughts and good wishes to you, how rotten to have it come back. Hope they work out the right treatment plan for you.
thank you and a special hi to rhapsody
Hi all,
Just to let you know a new forum room has been created for IBC as requested.
Kind regards,
Jo, Facilitator
Thanks Jo - i was just coming to say we now had the section…
Dear Eileen,
I had IBC in 2006 and was treated with 6 taxotere & herceptin (which were very effective) and a mastectomy. (I had already lost my other breast to ‘ordinary’ bc in 2003-4.) Herceptin and arimidex kept me clear until Feb 2008, when I was diagnosed with brain mets. Steroids and radiation sorted that out, but in the summer the IBC returned in the form of numerous lumps on my chest. I was put back on herceptin, but that didn’t seem to be having any effect, so I was also put on capcitebine (oral chemo) which did work within a few weeks. I had about 7 cycles of capcitebine, ending in December. I’m now just on herceptin and feeling remarkably fit & well, with no sign of the IBC.
Regards, Lynn
Hi Eileen5
I to was dx last Aug,had 3 types of chemo but they didnt work.
In Feb i had a mastectomy and 5 weeks after the op my cancer was back,its in my chest wall,i have skin mets and cancerous nodes under my collar bone,in my chest and in my neck. I am having rads at the mo but the skin mets seem to be spreading.
As none of my chemo worked for me(i am also triple negative) I have been told i have a minimum of 6 months to live,the cancer is now in the blood stream and will start to attack my organs next.
I cannot accept this so have been to The Royal Marsden for help…The Oncs there are going to put me forward for a trial so im hoping this will prolong my life.
Are you triple negative too? Do you have cancer in your chest wall?
Sending you lots of gentle hugs
((((((hugs))))))
Shell
xxxxxxx
I am sorry to hear that you aren’t doing well, no you can’t give up. I had a Pet scan in Februay and it showed that it had spread in to the bone marrow. I was given Zolmedia ?? to help with bone growth. It is very hard since you think you are doing the right thing with the chemo and the surgery and then it comes backs. I am having chest pain and arm and back pain, I am not sure if it is from having 17 lymph nodes out, but I am going to a PT for help with that.
I was trying to find out if the pain is from the chemo shrinking the tumors that started to grow.
Take care ==big hug for you
Eileen
Shelly - how are your rads going…? Hope that you are not burning too much…
Theresa x
Eileen - hope that the meds are helping and that you are not in so much pain now…
Hi ladies
Hope your all as well as can be…
My Rads arnt too bad at the mo,im a bit sore and red but its managable. Only another 7 sessions to go, the travelling is the worst part, its a 3 hour round trip…
I have been to The Royal Marsden and spoke with the trial doctors. If my fitness is ok and the tests i have are ok i can take part in a Phase 1 trial.Hopefully in June after my rads and my holiday. I go for some tests on 29th april…
thinking of you all.
Shell
xxxxxxXxxxxxxx
Shell - that is good news about the rads and trial… Hope that the tests go well for the trial…
Sorry that you have such a long journey for your rads - mine was quick when i had a lift - nightmare when i had to go by public transport a few times…
Theresa x
Hi All
I have just found this site and have read your messages with interest. I was diagnosed with IBC in June/2007; had 4 x FEC from which I had poor response so then I had 4 x Toxotere which did give good response; then 20 radiology treatments; then a mastectomy; I began Herceptin concurrent with the chemo; and am now on Arimidex. I am HER2+ also.
Getting stronger all the time and enjoying life but I wish I could find someone who also had IBC; nobody has heard of it and when other ex-cancer patients talk, I always feel like an outsider.
Just found an indentation on the edge of my left nipple and will see the Breast Clinic on Monday; trying not to panic. What does skin mets look like ?
Thanks
tollcrossgirl
Hi Tollcross Girl.
There are quite a few of us around on this site and no doubt you’ll get responses from some of the others. I know what you mean about feeling like an outsider. I was only diagnosed at the end of March 08. Most people assume, because I’m on chemo, that I’m nearly at the end of my treatment instead of the start. I’ve been luckyish so far. I have had quite a good response to the FEC very early on. Praying that it carries on that way.
Sorry to hear you have a new worry. One of the others asked the same question recently about skin mets and a few responses have been posted under Just Curious thread that might help you.
Best wishes
Jan
Hello tollcross girl,
I’m so glad you have managed to find us, it can be incrediby lonely being dx with IBC. I think the success rates are getting so much better with other bc dx that people do, as Jan says, wrongly assume everything will be OK once we’ve been through chemo.
Do take a look at the other thread mentioned, I’ve described my own skin mets as best I can.
I wish you well for your appt, please post again and let us know hoe you get on,
Love
Jackie x
Hi tollcross girl
Sorry that you have found us, not that we don’t want you but because of your dx, one that no one wants to have.
If you have any questions don’t hesitate to post, IBC is so rare that most people have never even heard of it, so it is lonely.
We all stick together so come along and join us.
Good luck when you see the breast clinic, let us know how it goes.
P xx
Just wondering how you got on on Monday tollcross ?
Jackie x
Hi Tollcross girl
Hope it goes Ok with the Breast Clinic. Will be thinking of you. Let us know what they said.
Andie