Cancer Support thread #78 - 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

Thymeout Hello. I had one large rugby ball size ovarian tumour, one slightly smaller that had twisted, omentum and appendix out. Definitely not keyhole surgery ! Had dreadful wind, and after four suppositories, (not all at once) and two enemas, the hurricane passed. Waiting to get results now, and considering I was told non operable after 12 lots of chemo, the surgeon has done a marvellous job. Its palliative but got to give me longer without the huge tumours pressing on everything surely. Got home Tuesday night and feel bloody great at the moment actually!

Hi @Acinonyx2 sorry to hear about the extra chemo. Hope you're feeling ok. I was gently told to expect a partial response (at best!) but I still found it very hard to accept somehow. Thinking of you. Is your new chemo HER+ related? It hasn't come up as an option for me but I'm HER- (and ER/PR+), but I'll ask about it when I eventually see the dr.
In more positive news I have a face to face appointment with the hospital physio next week so hoping they will be able to help me with my arm!

fizzy orange
I said I would get back with my diagnose
It’s invasive ducal breast cancer 2
Non aggressive
Think I should be positive with this news
Wishing U well

@Lubballoo yes - Kadcyla is basically Herceptin carrying a cytotoxic agent - so only for Her +. It was developed for metastatic cancer but has now been approved for people like me with residual primary Her+. There are hormone options for partial response but I'm not hormone + so haven't looked into that.

It's been a couple of weeks since the penny dropped and I realised this was probably going to happen and I did cry a few tears over it. I could refuse and just have Herceptin - but the trial shows over 10% improvement in survival to 3 years so it's not really sensible to refuse. It's so new there is no data longer than 3 years!

Yeah @Acinonyx2 I'm with you, totally take that 10%. Doesn't stop it being shit though does it! Hopefully the new chemo will be as gentle as possible.
I think it's 5 -10 years of ovary stopping injections next for me, combined with aromatase inhibitors and bisphosphonates. I'm already pretty joint achey and hot flushy after chemo plunged me into sudden early menopause so hoping it won't get too much worse!

@Lubballoo yeah I think they just keep adding things on so you never actually stop. Well, we can hang around here and moan to each other

@Acinonyx2 No radiotherapy for you? I had an appt with my surgeon y'day & hadn't realised a delayed reconstruction after radiotherapy is best so I'll be lopsided for at least 6 months. I'm FF/G & there was lots of talk about droop & laxness which was repeated in print in the letter I got today! Cheers for that

I'm a bit squeamish about nipple reconstruction so will see the other surgeon who's doing the aesthetic bit to find out if it can be spared by going for quite a reduction. I'm fantasing about being pert and going bra-free!

Also Acinonyx2, just wondering if you've ever had EMDR therapy? If not & it'd be suitable I do recommend it, as it seems to have been pretty much a miracle cure for my 30+ yrs of extremely poor mental health & chronic depression, so much so that I barely feel any angst about the cancer, much to the confusion of relatives & acquaintances. I came to it via a circuitous route & was sceptical even though it is evidence-based. But it is tough so ideally one wouldn't time it with cancer treatment obv.

@HauntedDishcloth I'm FF and not having reconstruction at all I am having radiotherapy after surgery. I see you in future - running pertly across sun-kissed sands with your state-of-the-art nipples bouncing in the sea air

I will have a look at EMDR. It's fair to say that my mental health is not generally tip top...

First time posting here, even though I had bc last year.
I’m posting for my son, 19 years old and has just been referred by Dr at A&E on 2 wk cancer pathway to breast clinic.
I’m trying to remain calm.... he has a new lump on nipple, not a bite and it is under the skin, a hard lump. Unfortunately also has an inverter nipple, quite obviously being ‘pulled in’, although the other nipple is also inverted (though mildly in comparison). Also has a swollen lymph gland under armpit. Doesn’t look at all good and doc said he was emailing breast clinic for urgent appointment.
I know 90% lumps are benign and sooo unusual in a young man too.
It’s just the wait.
Btw He only went to A&E because GP have him an appointment in 9 days!!! We phoned Macmillan and they said A&E.
I feel numb.
Just offloading

@Acinonyx2 I'm sorry to hear about the further chemo. So you had an MRI halfway through your first round, as well as one at the end? Makes sense, as at least then you have some idea as to which drugs worked. I'm on Herceptin/Perjeta here, too, though - until early 2022. So, plenty of shots in store, still. If the new chemo isn't too brutal, perhaps you can think of it as just rolling in with the Herceptin treatments? But I don't want to minimize your news - more chemo is never going to sound like much fun.

@Puddingnpie It's understandable that you're worried - in many ways, I can imagine it being harder when it's your child that's waiting for results. Feel free to unload here, where everyone gets it. Is your own BC resolved now?

backformore Thank you.
Yes, mine is resolved and I was moving on.
I’m sure he is fine but there is that small chance

Hello ladies, I dropped off the thread a few weeks ago when I couldn't get the pain in my arm and shoulder under control. My GP prescribed Gabapentin and I can now sleep!
I wanted to let you all know that I have had the results from my lumpectomy and sentinel node surgery and it's good news! My consultant said he removed the tumour with clear margins, and the lymph nodes were clear too so as far as they can tell it hasn't taken up residence anywhere else.
I see the oncologist on Tuesday to sort out radiotherapy and hormone blockers. I feel very lucky.
Strength to all you fabulous lot, especially to those having a particularly tough time at the moment. I'm going to catch up with the thread now.

Oh @Acinonyx2 I am so sorry to hear your news. Ten more months sounds gruelling and while you suspected it was coming it must still be pretty devastating. It really does suck.

@Puddingnpie I can't imagine how scared you must feel for DS. Got everything crossed and double-crossed for good news for him.

I went in for bloods to be redone today and they wanted to take them via needle as there was no-one free to do it via PICC. I have been so compliant with everything so far, but this was the final straw. I am absolutely covered in bruises all over my hands and arms where people have tried and failed to take blood over the past week. Why do I have a PICC if no-one bloody uses it?! So I refused and said I would wait until they could find someone qualified, and after 40 minutes a nurse became free. Even then, it took her two attempts to draw it from the PICC - I think my body is rebelling against it all! But at least it was painless.

Anyway, the result is that my final chemo tomorrow has been postponed for a week because my liver function is still poor. Grrrrr.

Oh and yay @Livelongandprosper for your good news! You jmst be so pleased!

@AlbertCampion Grr on your behalf! I had the exact same response when my chemo reception tried to send me to have bloods done by needle - said the exact same thing as you, ie “Everyone told me to get the port, and now that I have it I’d like to use it, even if that means waiting for a trained nurse, please and thank you.”

Have you been able to use it for CT and/or MRI? That’s what I’m waiting to find out (last chemo next week, then MRI soon after)...

@backformore I will try to think of it like that and hope for the best. It's going to happen, whether I whine about it or not. And I prefer to know now, rather than waiting for the pathology from surgery.

@AlbertCampion I am deeply frustrated on your behalf wrt the veins issue. I have a routine in place now going forward - bloods via port on the chemo ward, cannulas upstairs from vascular access before going to wherever my scan is. You should have a permanent note that you get everything via your PICC via a nurse who can do that.

@Puddingnpie I hope your son is able to look back on this as a brief nasty scare. Nothing worse than fearing for your child.

@Livelongandprosper may you continue in your name - may one day raise a cup of blood wine to our perseverance.

@backformore do you have a power port? I don't - so can't use it for scans, hence getting the expert nurse upstairs to do the cannula first. That nurse does it so easily in a minute - I hardly even feel it

@backformore unfortunately I wasn't able to use the PICC for the CT - they can't put the dye through it, apparently. So I would definitely steel yourself for a cannula - maybe apply some Emla beforehand? The nurses said to me that they prefer the crook of the arm, but mine wasn't cooperating so it ended up in my wrist.

@Acinonyx2 my CT showed no change to the size of my tumours after 3 cycles too, it is hard to take in at the time.

@Puddingnpie I really hope this is a nasty scare for you and your son that will amount to nothing. I have often thought how I would feel if it were DD and not me, I am thinking of you.

@AlbertCampion oh honestly, what is the point of having a PICC or a port fitted if they still want to use a needle? I would be cross too. As time goes on, I become less compliant too, it is inevitable that we are worn down with it all.

I have had bad news today, my surgery has been delayed due to a 'clinical decision' whatever that means, apparently nothing to do with my condition or case as such. It has been delayed by two weeks, just as I had built myself up for next Tuesday. I am so fed up with all of this.

@FizzyOrange that's rubbish. Like you I just want it over with.

Oh geez, I'm sorry to hear that @FizzyOrange! It's so rotten to feel messed around like this.

@AlbertCampion I have a Power Port, so supposedly they should be able to do everything with it. I'm going to call the MRI dept and see if their nurses are able to access a port - and if not, I'll arrive early to get a nurse elsewhere to do the cannula. Good tip, @Acinonyx2! A bit like Fizzy, I'm just fed up with being compliant - for me, it's now as much about the principle as it is the needle! Petty, I know.

@Acinonyx2 Oh I know. When I was at work, occasionally someone would be diagnosed with cancer and they would be off work whilst they had treatment. Time flies and before I knew it they'd be back and 'looking so well'. When that person is you, it just goes on and on.

@backformore It isn't petty, there is no point having a port if they hadn't intended to use it!

I am less compliant with all this than I used to be and also much crabbier! I had a vena cava filter fitted today and was in the day unit for hours 'recovering'. When I had my biopsy 5 months ago, just lying there recovering in hospital was fine really as I felt I was being looked after but now it all just annoys me!

@FizzyOrange Hope the recovery continues well and that you're home by now. Even these little surgeries take it out of us, I feel. And it all adds up, physically and mentally.

@backformore none of the scan people at my large teaching hospital can access a port! My nurse makes me a separate appt with the specialist dept (you may have something like it - vascular access) to do it. They always think I need some fancy long special line but I always tell them no - I just need an ordinary cannula and they can always do it really easily. It has really removed a whole layer of misery - that and getting an appt for bloods from the chemo nurse (apart from that awful time the nurse missed the port ).

These smaller processes really do maintain a constant stress - also time as I'm starting to phase back into work.