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Original poster

tell me everything about helping a friend with (I can't type it)

55 replies

Mitchy1nge · 01/05/2013 11:33

with a rare and aggressive sort of cancer

so far I know that crying is not especially helpful but there must be things I CAN do?

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Original poster
Mitchy1nge · 16/05/2013 11:39

thanks, yes it's inflammatory breast cancer

it's so fucking horrible

:(

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Original poster
Mitchy1nge · 16/05/2013 11:43

am just desperately wondering if she tested positive for those hormone receptor things but scared to ask in case it's a no, then isn't it game over more or less?

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thegreylady · 16/05/2013 11:54

Not necessarily.What matters is whether or not the cancer has spread outside the breast into bone/brain/liver or lungs.
If it hasn't then she has a good chance of longterm survival.my cancer was not ibc but was negative for hormone receptors and Her2 which limits treatment if it spreads but here I am nearly 7 years later. I know several IBC ladies who have survived past 5 years without recurrence.
Yes they will throw some hard chemo at her but that will be doable.Akk what stage her cancer is.1-3 is definitely treatable and survivable.4 means it has spread but there will be treatments. Please do not fly into panic mode.go to Breast Cancer Care and look at Inflammatory Breast Cancer thread and you will see many positive stories.

Original poster
Mitchy1nge · 16/05/2013 12:07

thank you, am assuming it is 4 if this thing in her liver (MRI to confirm today) is yet more of it, but last night someone said it is definitely not The End like it used to be - there are even surgical options, lasers and stuff?

I would really really like to read positive stories from younger women who haven't had children if there are some, will be brave and have a look x

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Original poster
Mitchy1nge · 16/05/2013 12:09

I think IBC starts at stage 3 they said, doesn't seem to exist in an earlier form, the fucker

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Original poster
Mitchy1nge · 16/05/2013 12:11

exist detectably I mean

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thegreylady · 16/05/2013 19:09

If it is in her liver then it is 4 [you didn't say that earlier :(].It may mean that the treatment will change-chemo may be different and they may not operate for now. I really hope it is checked at stage 3 and whatever they have said about her liver is unrelated.
Good Luck

MaryAnnSingleton · 16/05/2013 19:32

might I be able to help ?- haven't got IBC but had invasive ductal carcinoma of the breast 4 years ago - I now have spread to my lungs,so stage 4,secondary or metastatic bc -diagnosed in September last year - I'm very much alive and getting on with stuff like work etc and am having chemo - it isn't a good prognosis -but treatments are there to manage the disease.

thegreylady · 16/05/2013 20:49

Thanks MAS I hoped someone would put it better than I did. I didn't pick up any mention of spread at first. Maybe op you'd like to look at ruff's Tamoxifen Thread on here. I'm not sure whether we have have any IBC, ladies but several with Mets I think.

gingeroots · 16/05/2013 20:49

I think OP said her friend was having scan today to see if liver is affected .

thegreylady · 16/05/2013 22:07

Let's hope she gets some good news. I missed that-thanks gingeroots.

thegreylady · 16/05/2013 22:08

I don't know where "ruff's" came from!

Original poster
Mitchy1nge · 17/05/2013 10:41

thank you, very encouraging to hear from someone who is still going despite it all!

they still don't know about the liver so another sort of scan, like the staging scan with the dye but this one is PET (I think?) am assuming if it wasn't immediately apparent on the other scans then it's probably nothing

it's so shit though, and there is so much more shit to get through :( I wonder if there will be a lull in treatment at some point so we can go to Madagascar and see the lemurs? Can you still travel and do stuff?

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MaryAnnSingleton · 17/05/2013 14:06

yes,think you can travel as long as not having chemo

Original poster
Mitchy1nge · 09/07/2013 18:25

it's all so immeasurably shit

realise it is 100000000x worse to be actually going through it rather than wringing your hands on the periphery wishing you could magic it all away but I just needed to say that

why isn't there anything I can actually DO

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Pandemoniaa · 10/07/2013 12:22

It is all immeasurably shit. This I know although it is my DH who has a Stage 4 cancer.

I wish I could offer truly great advice that would make you feel less helpless but I do agree that sometimes, it is those of us living with, or close to, the person that has cancer who feels the most out on a limb. Don't feel bad about these feelings.

What I'd say is be around for the good things. The simple things. There's plenty of bad stuff going on that you can't do anything about but never underestimate the therapeutic value of precious time spent enjoying the less substantial things in life. Tea, cake, black comedy. I'm not being flippant or underestimating the impact of this sort of diagnosis but equally, sometimes the greatest support you can offer is the little things.

ClairesTravellingCircus · 10/07/2013 13:09

Hello OP

I have just found your thread. I am really sorry that you and your friend have to go through this, it is not easy for anyone.

I think you have already been given excellent advice and I notice the thread is a couple of months old, I wonder how things are now?

I didn't have IBC, but I did have G3, Her2+ negative to hormones cancer, the stats at the time were terrifying, but I've had the best possible outcome, and here I am nearly 6 years later.

I just wanted to add that stage 4 is no longer a death sentence, more and more people are able to live for many years managing the illness. I truly hope your friend is one of these.

sending you hugs

Original poster
Mitchy1nge · 10/07/2013 13:42

thank you both for your very kind and supportive words Flowers

friend is more than halfway through the course of chemo but so far it hasn't shrunk anything, she is just tired and struggling and sick. Think the goal was to get to a point where they could operate but what happens if they can't? Can you still recover from it?

Not that it is helpful to speculate very far ahead. I dream about her a lot and in my dreams she has been dead for a while but is still talking to me, it's horrible and so ghoulish. Then I wake up feeling guilty for mourning someone who is not only still living but might not necessarily be dying - but can't help my dreams can I?

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monikar · 10/07/2013 14:53

Just want to add my support and say how sorry I am that you and your friend are going through this, it must be extremely difficult.

I expect you are having vivid dreams because you are worrying about her so much in the day that at night your brain is trying to process these thoughts. You sound like you are a great friend to her and just knowing that you are there must be a great comfort.

I don't have any experience of BC but when my FIL was dying of cancer, he said he wanted everyone to be 'normal', which is very difficult. As expressed by Pandemoniaa just doing normal simple things can be very helpful. I used to feel guilty talking about everyday things with him, and laughing about things with him, it felt disrespectful, but this is what he wanted - to participate in life as a normal person for as long as he could.

Flowers
ClairesTravellingCircus · 10/07/2013 14:56

Ag Mitchy that sounds horrible. No you can't help your dreams, they are expressing your worst fears, as they often do. Do not feel guilty about them, they are a measure of how much you worry and care for your friend.

I am really sorry to hear the tumor is not shrinking. It must be difficult to keep up hope in the circumstances. Do the drs express any opinions?

ChestyNut · 10/07/2013 16:45

No you can't help your dreams. It's just your brains way of trying to process such a horrific thing.

Sorry treatment isn't going as hoped.

What was the end result about her liver?

Pandemoniaa · 10/07/2013 20:12

I also agree that Stage 4 doesn't have to be the awful, automatic death sentence it used to be. Which is why doctors rarely want to discuss timelines. That's not to say they are necessarily curable but they are treatable in a way that can significantly prolong life. My DH's cancer is not operable but for all that, it looks like his condition can be maintained and progress significantly delayed and this could well be the case for your friend.

As for your dreams, yes, you will get them. Because when we dream, all the things we dread rise from the subconscious. I actually think it is a coping mechanism, strange as that may sound. All those nameless fears have to be dealt with at one level or another.

Original poster
Mitchy1nge · 11/07/2013 11:47

I think they decided it wasn't cancer, just an anomalous little thing that they couldn't identify - I don't really ask questions about the cancer, she leads the way if she wants to talk about it but otherwise it's our usual vacuous chat. They have changed the chemo drugs though and given her some better anti-sickness and anti-constipation meds so that is helping. And there is a scan coming up soon to check again if chemo is managing to actually shrink anything so please please please please please let that be the case. The idea that all this is for nothing is just, fucking, ?

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Original poster
Mitchy1nge · 05/02/2014 00:28

everything is so shit

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Incapinka · 05/02/2014 00:45

How is your lovely friend doing?

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