Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Thanks for the thread. Setting up beverages of choice and comfy chairs.

@LemonDrizzle10 Thanks for the new thread. Can I get a refund on my hours and hours of googling! Why did i do it? So different now I'm further down the line. Sometimes .. and only when I'm dressed and can't see myself I almost forget it's happening to me. Then appointment letters appear. Post mastectomy now. As well as an oncology meeting booked in I am now having a blood test for BRCA as after chemo / radio there is something called abemaclicib or another type if BRCA confirmed. Is this standard?

Thanks for setting up - am joining with interest as had heard about the cancer threads on here. Was diagnosed late June with lobular breast cancer, and am a couple of weeks post breast conserving surgery with sentinel node biopsy (clear), and am still getting the nervy pain from the latter! Results in Wednesday eek😬

@somewhereonthe517 I had the BRCA test 5 weeks ago yesterday and still waiting for the results. Hoping to get with post-op stuff Wednesday. Hadn't heard of abemaclicib but just googled (after what you said as well!!) and there's an article in The Lancet about it.

@LemonDrizzle10 I just realised the title of this thread is no googling allowed and what did I do within 5 mins of being on it?!!!

Oo crikey. Now I have googled it and also read about it on breast cancer now. It sounds like it has so many side effects? Is there anyone here that's taken it after chemo. I've been told 2 years?

Stop breaking the rules!
you're not allowed to Google.
NHS and MacMillan are allowed though.
Freestyling on Google is far too scary!

@PaperbackWrighter @somewhereonthe517 BCRA tests usually take 6-8 weeks to come through. The results go to your surgeon/breast cancer team and they call you. You'll receive a hard copy in the post following that.

I was tested for BCRA the same day I signed my consent form for a mastectomy. The results came back exactly six weeks later. I have both BCRA 1 and BCRA 2 mutations. I wasn't offered abemaclicib, nor was my friend who has triple negative/BCRA 2.

Thanks for that @doublec - won't rely on getting my BRCA results with post-op results then as that'll be 1 day short of 6 weeks! Sorry to hear that you had both mutations. Mine feels very random as I had 3 maternal great-aunts (all sisters of my gf) who all were diagnosed with BC in their 40s.

I haven’t been genetically tested (no family history). But I have been told I will need abemaclilib. I have lobular cancer which loves hormones (er 8/8 and pr 8/8, her negative). After my mastectomy pathology showed tumor was 7cm and 2/4 lymph nodes. Which is why my treatment plan is now much more aggressive and involves chemo and targeted therapies. I’m ignoring the side effects list. I have decided to try everything they offer and re-consider based on how I feel. Although this is easy to say now as I’m in the middle of chemo.

I was lobular and offered abemaclilib, I didn't take it, but I think Dotty on the recovery thread did. Its supposed to be for stage 3 (or equivalent if multiple) or stage 4 and lasts 2 years. I declined mainly as DS was in hospital miles away at time but I think try it and see how it is, is a good approach. I was a bit shocked how after 2 surgeries, chemo, radio, Tamoxifen and another surgery looming it was suddenly oh you can have 2 years of this too. Think it has to be started within a certain time from radio, maybe 12 weeks and not sure if it requires regular bloods. Some people seem to be unable to tolerate it and other seem OK though I do think some drugs take a while to settle. I was one of the first offered it so there wasn't much available at the time other than people at stage 4. It would be to reduce chance of reoccurence but obviously if it makes you live on the toilet its probably not worth it as doing 3 to 5 hours exercise a week reduces reoccurrence 50% whereas I think that cuts a third someone said. Though best to discuss with oncology. I was told barely any difference for me.

Thanks for the new thread

Thanks for the advice re being offered abemaclicib. @Nomorebear I think I should very much adopt your attitude and see how it goes. I have half my nodes exactly like you and that's interesting @penguinsa.. I suspected it was a recent addition as I hadn't heard of it much. I realise there are no quick fixes but your sentence about surgery / chemo / 2 more years does resonate.
Hope you all have a reasonable weekend. @Nomorebear hope chemo is currently tolerable and @penguinsa.. I have no words re your op. What a tough decision coz your job sounds intriguing/amazing.

@penguinsa
Regards exercise.. I do a heck of alot of walking as very active golden retriever! I know I might need to step things up a bit in the future but does the walking count?

Also @Penguinsa i would have been devastated after having waited so long and then geared myself up for a huge op for it to be cancelled on the day. I can’t believe they managed to screw up that badly for something that was known for years. I’m so sorry this has happened to you. Appreciate this doesn’t help at all. But the job sounds like something to really look forward to.

Although sometimes he's not so bothered!

He's gorgeous 😍

Thanks for the new thread. I posted on the old thread just before you started this one, Just wondering if by any chance any other mumsnetters have had olfactory neuroblastoma.

Thanks Somewhere Yes apparently walking can count, I think a reasonable pace is best for it to count, or adjust if slower. Your dog is beautiful. I would try to incorporate an exercise that does whole body like swimming or something like gardening I count as well as long as it's fairly active. Swimming I count time actually swimming rather than in jacuzzi, steam room, sauna, chatting. I keep a total and weekly average so can see progress. I am over the 5 hours average at the moment which is good incase surgery does happen. Would definitely chose job if it becomes job or surgery, part of me wonders why I am doing more surgery.

Thanks Nomorebear

@penguinsa. I read your posts about your family, garden and life in general. It all sounds lovely.. You seem to have it pretty sorted and sound (from where I sit) to be really healthy now and moving on in life. The job sounds just what you want.. go for it I say!

@scentsless. I hope you get someone on here that can share advice / has experience of your condition. Hope you are doing okay

Thanks for the new thread, @LemonDrizzle10

I’m sorry to see new folks here but pleased to see how many challenging treatments everyone is managing. I still follow the thread and catch up every now and again and in that way it is really noticeable how everyone is progressing.

@Penguinsa I’m sorry to hear your surgery was cancelled and unnecessarily too. Mine was delayed by a couple of weeks and that felt disturbing enough when you’re geared up for it mentally plus have everything organised! I hope you find a solution that works for you. I am 4 months post DIEP and we haven’t talked about any further surgery yet but I know they put a little extra padding in the breast so I can choose whether I want to have more modelling done. I hadn’t really realised that this was normal so you know more than I did. I asked my surgeon to get it right first time and I think he did his best, other women (with the same surgeon) seem to want extra put in and I knew I wouldn’t want that. I’m waiting to see how it all settles down as they recommend. My friend had implants and has been happy with them for a few years now.

For those with new BC diagnoses, I just want to offer a little light at the end of the tunnel. I was diagnosed a year ago and chose to have chemo first, to try and shrink my tumour to allow a lumpectomy. I did chemotherapy for 6 months, from September to March. It did shrink my tumour from 29mm to 16mm (it also reduced the grade of the cancer from grade 3 to grade 2) but ultimately my surgeon felt a mastectomy and DIEP reconstruction would give the best aesthetical result. My lymph nodes were negative luckily. I went ahead with the mastectomy to give me overall better clearance and to avoid radiotherapy rather than for the aesthetics and it’s been ok. I’m now on tamoxifen and have just started venlafaxine to combat the hot flushes but otherwise I’m ok. I’m pleased to say my energy levels are much improved since chemotherapy and the neuropathy is mild now. I’m getting much stronger since the surgery too. It will take time to accept my new body and how it feels (or doesn’t, since my new breast and stomach are numb after the nerves were cut) but I’m determined to get there. Most positively, I don’t think about the cancer and the treatments all the time any more! Life is getting back to normal, which is weird in many ways but so welcome. I hope my story helps a little, though I do feel I’ve been lucky and I know it’s not always like this.

Re. abemaclicib

As it happens, I saw my friend today and she actually spoke to one of the people in charge of a current study for this drug - he's a professor at Guy's hospital, London. (Can't recall his name, bloody chemo brain. Incidentally, my oncologist consulted the same guy re. chemo for me, due to my double BCRA mutations. What I guess I'm trying to say he's a bit of an expert in this area.

Anyway. My friend asked to be referred to him for a second opinion as she was initially offered abemaclicib, then refused. It transpires that because she had a full pathological response to chemotherapy (triple negative, so chemo before surgery), she wasn't eligible for it. She was told that it's only offered to those who do not have a full pathological response. With regards to my friend, it was felt that immuneotherapy would be more effective, so she has six months of that.

That's interesting Doublec as I was offered it and had no evidence of cancer remaining after surgery, obviously could have been some cells they couldn't see but then had chemo, radio, Tamoxifen and to me abem.. seemed a bit overkill. There's were also some doctors who questioned whether it was advisable to take a stage 4 treatment away. But one of those things to discuss with oncologist, mine said of little difference and lots of side effects so I went without and exercising a lot (though if son had not been in hospital might have tried though after a year's treatment and Tamoxifen just wanted treatment over and to enjoy life again).

Thanks Breakfast How much of your stomach is numb. I am currently numb just under armpit and its fine but the breast chopped off plus numbness is annoying swimming. But wonder if DIEP would be worse for swimming if stomach is numb and weaker.

Thanks Somewhere I am really excited about new job on the remote island. It also has a giant outdoor pool about 1 minute from it.

@Penguinsa my stomach is numb in the central area above the scar, to just above the belly button. I haven’t had any real weakness in the stomach since recovering from surgery (obviously weaker in the first few weeks). The incision into the stomach is relatively small. I was swimming on holiday 3 months after surgery and it was actually really helpful. The stomach area is tight, and this definitely helped to stretch it out a bit.

It is weird, but hopefully I’ll get used to it or sensation will return!