Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Just had my oncology consult for chemo on Friday but they’ve postponed it for a week because of neuropathic side effects.

I know it’s in my best interest but why do I feel so fed up about it.

Sorry for the pity post

@JingleJum I have small breasts I said I didn't want implants or reconstruction chop em both off, but they talked me through the options . No reconstruction would've left me very lopsided as they take the surrounding tissue as well. There are lots of types of reconstruction I suppose it depends on the individual and where the lump is and size of the lump and the breast. My reconstruction used tissue from under my arm and back. I have a scar under the breast and partly around my back which is hidden under my bra. I had the operation on the 12th April and I have got most of my movement back, its very important to do the exercises. You are lucky to have a date so soon the waiting is the worst part but don't forget its your decision what's right for you. x

Thanks. They said I'm too slim to use any of my own tissue for reconstruction (although that's a bit confusing as my breasts/stomach are small and slim but I have a juicy butt ).

I'm grateful to have health insurance through work and the private system seems very quick and efficient. They had booked my MRI for today and surgery date for next week as soon as they got the biopsy report and before they even gave me my diagnosis this morning.

I'm leaning towards mastectomy but worried about the higher risks of things like adhesions/nerve pain etc.

@JingleJum yes I had a nipple sparing mastectomy and immediate reconstruction with an implant. That side of things has gone well (I had 3 consultants admiring it today). I wasn't a suitable candidate for using my own tissue either. It's 3 weeks tomorrow since the surgery and there's still some swelling but I'm happy with it.
Lumpectomy would have taken a big chunk of my smallish breast. As it happens they did find a small 8mm tumour which wasn't apparent beforehand so mastectomy was a good choice for me
Do you have a breast cancer nurse you can talk things through with?

@MrsPnut and @Acinonyx2 the doctor did say it was a slim chance of it having spread but I can't help worrying. I didn't need pre op chemo so haven't been down that road yet. Am currently contemplating a shorter haircut and the cold cap along with eyebrow microblading.

I'm also trying to get my 2nd Covid jab but the booking system says no. The helpline were unhelpful, the GP surgery can't override it bit they tried and gave me a different number to try.

@Vinorosso74 was that just one side? The consultant said that as implants are so different to breast tissue I would look wonky if I just had one side done. Possibly because I'm so small even the smallest implant would make me lopsided.

My insurance company has given me the number of a nurse. Not sure if it's to chat or just to arrange appointments through. I might try calling tomorrow and find out.

@JingleJum BUPA gave me the number for an oncology team that I could contact but I haven’t needed to yet. I had my vaginal cancer treated privately but it was a 4 month wait for surgery at that hospital because they were booked with NHS work. I got a second opinion from another surgeon and he had a quicker appointment on his NHS list so moved for that and back private for chemo because of a wait for that on the NHS. This time I am having chemo at home.
With you being private, email your surgeons secretary and ask for them to call you to go over the options again or if they have a nurse that works with them that can call you.

@Vinorosso74 I haven’t cold capped but I’m quite funny about my hair and barely being able to wash it and all that conditioner and faff with cold capping just doesn’t appeal. The nurses already took over my living room with all their stuff. I have a wig and about a million hats.

Yes, just the one side. The consultant did say he could do a lift in future (I won't do as with a bra on it's fine and my other boob isn't particularly droopy). The implant isn't bowling ball shaped but a more natural shape. I did see an example of the implant beforehand.
My boobs weren't perfectly symmetrical beforehand but looking in the mirror, I'm happy with the reconstruction. Mine was done on the NHS but my consultant does private work too.

@Vinorosso74 I had a bit of a hassle trying to book my second Covid jab. I had a text from the NHS with a link on which showed appointments which I couldn't actually book! I thought I would bypass this and book through the GP but they said there weren't any appointments available anyway so 'no point trying'. I kept trying a few times each day and one time hit lucky and it let me book one! Hoping you've had success with the other number, it shouldn't be this hard to get one.

@ChocolateandCheese sorry to read your chemo has been postponed, I would be upset too. I like to feel I am on a timetable and to have that changed is very unsettling. Sending you a hug as you sound like you need one xxx

@Vinorosso74 I managed to get one session of micro blading done before I started chemotherapy and I have to say if you can do it. You should. It's taken a massive anxiety away and my brows looks bloody amazing whilst they still have some hair in. I've also been cold capping and so far whilst my head hair is thinning. I still have an even amount all over my head.

@ChocolateandCheese sorry to hear your chemo was postponed. Whilst you don't want to go in for it equally you don't want it moved around either.

My rectal maladies are improving. I feel physically close to normal. Just in time for round three of EC on Friday. Fuck cancer

@FizzyOrange I remember someone on here having trouble getting their second jab.The "helpline" was most unhelpful.
@MrsPnut I don't generally wear hats so am thinking it may be worth a go if I can tolerate it the coldness.....
@PhannyPharts that is good to hear. How close to starting chemo did you have it done? I need to sort jab first but may try to get a consultation at the weekend.

@Vinorosso74 eight days before I started. I had no real pain or itchiness or anything. Would love to have been able to do the six week top up but my therapist did as thorough a job as she could with the one session we had.

Thank you. I will book a consultation (once I've got my Covid vaccine sorted). I'm not usually particularly vain but I'm trying to avoid looking like a cancer patient.

Hi all. I have a question about Docetaxel (Taxotere) side effects.

I’ve just had round 2 of chemo (Epirubicin and Cyclophosphamide). I’m doing ok. I will be moving to Docetaxel, Trastuzamab and Pertuzamab for rounds 4 onwards.

I’ve read that the Docetaxel will have the most unpleasant side effects. Can anyone tell me, who has been through this protocol, how they found the the side effects of Docetaxel compared to their initial EC. I’m feeling a little scared in case it’s very difficult.

Also any thoughts on timing of my second Astra Zeneca vaccine. I had my first on March 8th. Last week of May would suit me but is that too early? Or could I go to mid June?

@phannypharts - I’ve missed the boat for micro blading. What can be done for my eyebrows semi permanently?

@Lunificent I did these the other way around - EC second. I found both regimes pretty tough but different. I got neuropathy in my hands and feet with docetaxel - it was reduced to 90% dose which helped a lot. I had a lot of joint/bone pain, stomach upset, mucositis and was just very knocked out and unwell for a few days. I wouldn't say it was worse than EC though, for me, (EC made me very sick) and I do seem to be pretty drug sensitive (I'm even allergic to the surgical glue!). So this is probably at the worse end of the spectrum. I'm always surprised when people are OK on EC! It's amazing how much people vary in response to chemo.

Trastuzamab gave me a constant bloody nose and poor/off sense of taste (and I was actually allergic to pertuzamab ).

Weird thing is that my bloods - white cells, liver function etc are always really robust. Hence in my notes it says: tolerate chemo well I just feel really terrible.

That’s really interesting and useful info @Acininyx2. My blood results before round 2 were ok but (not sure if I’m naming this right) neutropenia a bit low (1.8) and a bit anaemic. Wondering if there is anything I can do to help these not to lower further.

This might be a weird question but does anyone have any advice for what to eat after surgery if you have no appetite? I've already lost my appetite due to anxiety and was only diagnosed yesterday! Finding it hard to eat anything except biscuits which obviously isn't healthy. I need to order the weekly shop and have zero ideas for what to order as food seems really off-putting right now.

@Lunificent do you get the dreaded filgrastim injections to stimulate your neutrophils? Seems some of us do but some don't unless the count gets down under 1.

My red cell count did steadily decrease and I was mildly anaemic by the end. This isn't the kind of anaemia you can correct with iron as it's actually the making of the RBC that is decreased - if it gets really serious they can give a transfusion and/or a drug to stimulate RBC production. I did take a bit of Florodix iron supp after chemo - but not much (one of the nice things about the liquid tonic is that you can decide on the dose) as iron supp is not generally recommended with cancer.

@JingleJum I ate a lot of yoghurt, but then I find it easy to eat when I don’t feel like eating. I also had pikelets with peanut butter on because they aren’t as thick as crumpets so seemed easier to tackle psychologically.

@Acinonyx2 I had a nurse come and give me my filstagrim injection yesterday and I have a tox visit booked for day 10 of my cycle to give me a once over. I think because my insurance is paying they chuck the kitchen sink in.

@JingleJum my problems with food weren't psychological but when I had trouble eating I went for soft wet foods - soups, puddings. I couldn't have anything dry.

@MrsPnut the usual regime for some of us is self-administer one injection/day for 5 days. I don't mind doing the injections so much but I did hate them - I got aches, pains chills. I got 3 different injections to do after surgery and I just didn't do them - made me feel sick just to look at them and I rebelled!

@JingleJum I found yoghurt, or vanilla ice cream helped me.
Also soup.

Ive got my next lot of appointments post surgery, two more carbo/caelyx, (thats probably another chunk of my hair gone then)then a PARP, which they were thinking of Niraparib. But Im bit concerned about that as I already have pills for high blood pressure, and erratic heart beat, which this drug can affect.

On plus, Ive had a copy of the surgeons letter to the consultant and he mentions no residual disease! Originally after 1st line chemo was told no benefit from op as it was quite widespread. The second line seems to have done a better job than the first. Hopefully this gives me a bit longer than original diagnosis