Struggling

Friends and family Supporting someone with breast cancer
1

Hi, i first wrote on this website when my mum was first diagnosed, since then i have come on almost daily but never written again. I am now to the point where i just want people to be straight with me.

Basically, i lost my dad in September 2011, the day i was supposed to start university, 2 weeks later my mum told me she had breast cancer (Aged 42). Of course since then i have leant more about her pathology; she is ER+. PR+ and HER2+… The Her2 is the bit that scares me. 

Anyway, she was told stage 2 (no spread to lymph nodes but tumour just over the 2cm mark) and grade 2, but after surgery they up’d it to grade 3 (which i understand most HER2+ are). So she had 6 FEC chemo, 3 weeks rads (more targeted or something, on a trial) and of course 18 doses of Herceptin (finished August 13). 

I never realised at the time the seriousness of the HER2 status, i was too bust grieving for my dad and running on auto pilot to keep the house running and supporting my little sister.

Fast forward to 2014 we had a bit of a scare with rib pain so sent for a bone scan which was clear (since i have learnt lots of people have rib pain due to rads) Other than that she is now on anastrozole and zolodex as she had a blood clot in her picc line so tamoxifen wasn’t an option.

The oncologist said 80% of people are still alive after 5 years, which i now realised could meant they are alive but with secondaries…

My mum is currently of sick with stress, as once all the big treatments stopped its hit her like a ton of bricks! Which it did to me to, im scared nothing is stopping it returning now, how likely is the herceptin to have worked?! No one can say for sure which i hate, im losing the plot i think about it every single day and im not even the victim in all of this… She is all i have left and if it comes back then that’s it for me, when she goes i won’t want to be here any more. (I know how dramatic and selfish that sounds when you are all fighting for your lives) 

I would be really grateful for someone to talk to who either has a similar diagnosis or who is my situation with their mums. I understand how agressive it is, and i have seen people write its as deadly as TNBC which makes me feel sick to my stomach.

Im so sorry for the essay, but i have no one to ever vent this too. I hate my friends that say “She will be fine she’s strong” last time i checked cancer didn’t care less who it took! 

 

Thank-you for reading xxx

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Hi blinklover,

I’m sure others will be along soon to offer you some much needed support, but could I suggest that tomorrow when our helpline is open again you give them a call, they’re here to support you and your mum through this.  Calls are free 0808 800 6000.

Take care

Jo, Moderator

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Hi blink lover I am very sorry to hear of all the pain you are going through . Hang in there I am sure the ladies here can be of help to you. I am thinking of you . I am recently bereaved and it is difficult. Take care I wish I was there with you both. Sending you bigs hugs xx

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Hi Blinklover

I am sorry to hear you are struggling. I know how hard it is as my mum was diagnosed with HER2+ BC too last year. The day I found out I felt my whole world collapsed and life hasn’t been the same since. When my mum finished chemo I totally freaked out as I felt there was no safety blanket there anymore. She is still on Herceptin and pray that the drug is as effective as people say it is in stopping the cancer coming back. Yes HER2+ BC is more aggressive and at the beginning when I started to read stuff online it totally freaked me out and I thought there was no hope for my mum. Since coming on to this forum and speaking to people who have gone through similar diagnosis to your mum and mine I do feel a lot more reassured that my mum will be ok. I would be lying if I said I am not worried about my mums cancer coming back because I think about it all the time but I don’t want it to define my life. I just keep telling myself that I can’t spend life worrying what might or might not happen. Life is too precious so try to live day as it comes.

I’m not sure if my post has been any help but I do totally understand your worries and fears. I have them too but it so important to stay positive.

Take care

Kat xx

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They said the same to my mum about the aim being to cure her and that 80% of people in her situation are okay at the 5 year mark! With her only being 44 she still has my sister to bring up who has only just turned 9.
I’m a strong believer in things happening for a reason how ever bad things are and I’m hoping in this instance we were being told to just stop and appreciate each other and life because all she did was work and clean, now it’s like she has a new lease on life (she spends too much time at bingo haha)

She was quite poorly during chemo she spent at least the first week in bed but she was never sick thanks to medications :slight_smile: but it was awful for her and the worst part was losing her hair…
She’s off work again sick with stress and we see the oncologist this month so she said I can go too armed with my book of questions haha. I just hope that even if it was to return the new drugs that are now available could help with a cure too.
What chemo did your mum have? One thing that’s bugging me is the chemo and herceptin doesnt cross the blood/brain barrier kinda leaving the brain unprotected so I want to ask about that too!

I just wish they could give us an actual summary of what will happen :frowning: xxx

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Blinklover,

I very rarely post now, just read now and again, but I felt I had to reply as you seem to be really struggling.

I was diagnosed in November 2010, when I was 42 large tumour (4.5cm) which turned out to be ER+, PR+ and HER2+.  No node involvement, so I feel that I got off lightly.   I had chemo to shrink the lump in the hope of avoiding mx, which worked so I then had a lumpectomy, followed by 4 weeks of rads and Herceptin for 12 months.

Whilst I was having the major treatment I was off work sick and went back full time during my time on Herceptin.  I also changed jobs whilst I was on Herceptin.

This year will mark 4 years and when I had my check-up last year with my surgeon I asked if I was getting to the point where it was less likely to come back rather than more likely, and he said it was always less likely to come back.

There is hope.  There is no reason why your mum won’t be around for many years to come.  No reason whatsoever.  It will get easier the more time passes.

Interestingly when I changed jobs, I had a co-worker who noticed that I had a blue mark on my chest (a tiny tattoo from radiotherapy planning).  No one would ever see it, but it turns out she noticed it because she had also been through BC some years before.  We got talking and it turns out she was also ER+, PR+ and HER2+ and was one of the first people in the country to get Herceptin.  She has a mx initially as she had surgery before chemo, but she had 12 months of Herceptin.  She has been recovered now approximately 10 years.  She is my benchmark.

 

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Thank you :slight_smile: he was really positive, quite happy now like I’m not on this site everyday anymore and things :slight_smile: she sees her oncologist and surgeon once a year at 6 monthly intervals if that makes sense, she’s just seen onc so will see surgeon in November :slight_smile: then yearly mammograms of course… her cough still hasn’t gone though :confused: but my sister has a cough too thinking it’s the weather!
How’s your mum doing? Xxx