Hi,
My beautiful mother has been diagnosed with ibc 3 months after first having a rash on her left breast. Still hasn’t started treatment as there have been more tests. She is at the marsden so will know monday what treatment. Last night she was rushed to local hospital because she couldn’t breath with fluid on lungs, I’m so scared.
Any help or positivity?
Thank you xx
Char
Hi Char,
Really sorry about your mum and sorry it’s taken so long for any of us to respond to you. IBC is very rare so we’re a small group and it sometimes takes a wee while. You will find the people on here very supportive and more of us will be along soon I’m sure.
It’s good that you are looking for something positive to hang on to. Your mum will need help to stay positive herself. It won’t cure her cancer but it will help to keep her going through her treatment. There’s no doubt she has a hard time ahead over the next few months but there is a lot of hope for her. The treatments can be hard but they are very effective and new ones are coming out all the time. Once she gets her results she will be given a treatment plan by her medical team and have a better idea what she is facing. The waiting is very stressful but most of us find once treatment starts the worry and stress ease off a bit.
I was diagnosed in March 2009 and had a year of treatment, chemo first, mastectomy then radiation therapy which is pretty standard for IBC. I’m also having Herceptin which is only effective if the cancer is HER2+. This will be one of the tests your mum has had and her Oncologist will explain the results to her. I’m now cancer free and back at work but no-one could have persuaded me this time last year that I would be so well. I was very lucky to get my diagnosis early before the cancer spread beyond the breast. Some of the others have been living with secondary cancers for a long time and they will be able to give you advice if you need it about how to help your mum cope.
My mum has lung cancer with secondaries to the brain so I do know exactly how you are feeling. She was diagnosed before me and I would have done anything to take away her pain and distress at the beginning. Telling her about my own diagnosis was the hardest thing I’ve ever had to do. She has finished her treatment now too and is doing very well. You don’t say what age your mum is. Mine is 74.
I hope your mum doesn’t have too long to wait for her results. Come back and let us know how she is.
Jan xxx
Char - so sorry to hear about your Mum’s diagnosis… x I hope that they have been able to make her comfortable in hospital.
I was first diagnosed with IBC in May 2008 and like your Mum had to have all sorts of scans and tests at the start… As Jan has said it does help once you have some idea what is going to happen like the others I also had 8 cycles of chemo, then a mastectomy followed by a month of radio therapy… In my case my IBC was responsive to hormones rather than herceptin so I am now on 5 years of tamoxifen tablets…
The marsden has a brilliant reputation especially for IBC so she really is in the best hands and they will be doing all they can and using the most up to date treatment once it starts… From you have said they will probably be keeping her in and draining her lungs of the fluid over the weekend…
Do let us know what happens and I hope you hear some good news… xxx
Theresa x
HI Char
I was diagnosed with IBC in August 2008. Like the others I had what seems to be the standard treatment i.e. Chemo first, then surgery and then radiotherapy.I also had a gap before treatment started while they did tests to see if it had spread. The waiting is one of the hardest parts. Once treatment starts she will feel as if something is being done. It’s not easy but in lots of cases is seems to work. Your mum is being treated at one of the leading hospitals so you know she will get the best.
I would caution you not read about IBC on the internet.A lot of the information is out of date and very scary. Ask those of us here on the IBC part of the forum anything you want. We will do our best to be honest with the answers.
Give her our love
Andie
Hello Char
So sorry to hear about your Mum’s diagnosis with IBC 3 months after the initial rash, I was diagnosed in June 2008 and initially for 9 weeks I was told I didn’t have cancer as the mammo and u/s were “normal”. I had a round of tests and scans, like your Mum and the others then my chemo started a week after diagnosis and I had 6 rounds of taxotere. I was also HER2+ so had a year of Herceptin which started with chemo. I had a mastectomy in Nov 2008 then radiotherapy started and 25 sessions of that.
What Andie says is true, there is a lot of misleading IBC information on the internet, I was terrified when I first read things on there but did find this forum helpful and slowly we have been increasing in numbers (not a good thing but at least we can give more accurate information).
Come back and let us know how your Mum gets on, in the meantime best wishes to you both.
Thank you for your replies its so nice to be able to talk about it, iv been at the hospital all day my mum had her lung drained and will be there until monday, we will be in touch with the marsden on monday to talk about starting treatment.I think at the moment she feels like giving up already after going through so many tests etc. I just want her to have some faith, I know its hard for her as it is with all of you wonderful ladies. Chemo scares her to death how hard did you find it?
Much love to u all
Char xx
Just getting used to this I didn’t see all the comments before! My mum just turned 60 in june she is so lovely and really puts everyone before herself I hate to see her go through this, I really don’t want her to suffer, we were told she wasn’t able to have herceptin so not sure what that means.
Thanks again for all your replies xx
Char Xx
Hello again Char,
Yes, it’s very hard to see someone you love suffer. I hope she’s more comfortable now that the fluid is being drained and I’m sure once her symptoms have been relieved she’ll start to feel more positive. She’s had a big shock and it takes time to come back from that.
If she isn’t able to have Herceptin it most likely means that her cancer isn’t an HER2+ one. This can be good news as HER2+ cancers tend to be faster growing. There will be other suitable treatments depending on her lab results. Initially she will have chemotherapy (there are lots of different ones) which is administered in hospital by injection or an IV drip. In the longer term, if it’s hormone receptive, she will have hormone treatments which are usually given in tablet form. The side effects are different for everyone. Some people sail through with very few and others find it quite tough. There’s no way to predict how she will react so try not to worry too much about some of the things you hear and read about it. The doctors are very good at managing side effects so that they don’t get out of hand and we don’t suffer. One side effect that most of have had to cope with though is losing our hair. It is hard at the time but it DOES grow back. You will find plenty of advice about how to cope with that if you need it and we will be happy to tell you how we managed.
I hope the hospital get her symptoms under control quickly and you start to see a difference soon.
Jan xx
Thanks Jan , I will ket you know how we get on tomorrow.
Maybe I will have a bit of sleep tonight
Much love
Char xx
Hi Char
You ask about our experiences of chemo. As Jan has said it is different for everyone. I had 4 lots of one known as AC and 4 of Taxotere. Personally I found the AC the hardest although many others on this site have found the tax to be very difficult. I lost my hair between the first and second doses. In fact I was quite releived when my hair came out because at least I had an outward sign that the chemo was having some sort of effect on my body. My hair grew back very slowly at first but now 18 months on from the end of chemo no one would know that I had lost it. The NHS will either provide a wig or make some sort of contribution towards one. Different health authorities do it differently.
The chemo does give all sorts of side effects most of which can be dealt with by the hospitals but they are not mind readers, you really do have to let them know that you are suffering and how for them to able to help. Tell Mum not to try to cope on her own.
By now you may have some answers from the hospital - I do hope so, let us know how we can help. You say Mum is being treated at the Marsden, is that in London, or Surrey.
Take Care
Andie
Wishing you and your mum good luck for tomorrow Char.
I have nothing to compare with as I had 6 rounds of tax. It was doable, but the doctors didn’t tell me about ALL the side effects, all of which are manageable and I seemed to have every one going.
But, that was 2 years ago and it is now a distant memory so my point is that we do get through it and with your support so will your Mum.
If you have any queries about specific side effects, please ask but it might be best to just wait and see as everyone is different and some sail through and even carry on working. I work from home and managed to continue work all the way through but my employer is very flexible.
Let us know how your Mum gets on and all the best
HI Char,
Just wondering how things went.
Jan xx
Hi Char,
Just thought Id come in and say hello as Im another IBC success story,went to the GP 3 times from May 08 to Nov 08 before I was given any tests then I got pretty much what everyone else got,6 lots of FEC(made me bald & knackered)then a mastectomy(just one overnight
stay in hospital)then,what I found the worst,radiotherapy & hormone
therapy. Now this brought me to my lowest ebb,felt really crap at that time,burnt and very nauseous as a side effect and quite down.
But a year on and I feel fantastic,were living in Spain now and thats helped me put it all behind me,I still get discomfort from the op and pain in my armpit which I accept might take years to go but when I recall how scared I was and how heartbroken my lovely daughter was,I really empathise with you. Like Andie said,dont read about IBC,its that scary what they write about it,I certainly didnt expect to still be alive coming up to the second anniversary. It will alter your lives a great deal,its only the last couple of months that thoughts of BC havent dominated each day,but Im sure your mum will get through this,aided by you and the rest of the family,God bless, love Mags xx
Thanks mags lovely to hear your story, thank you xxx
Thanks all for your comments,its been so hectic and stressful.My mum has had her fluid drained she had a chest infection, then went back to marsden who now say they are not sure if the cancer is from the breast or lung, then did another biopsy still not sure. Now she is in brompton having her lung packed with talc to stop pleural effusion and at the same time have lymph node removed to test the cells to see where the cancer is from. Her breast is still inflamed and swollen. She is so scared and confused.
Its a nightmare that hasn’t even started yet.
Will let you know more soon,
Thanks all
God bless u all xxx
Sorry to hear you’re no further forward. I hope there’s some improvement for your mum soon.
Jan xx