Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Who did you insure with, @ememem84 ? I've been thinking about a little trip when all this is behind me.

Fingers crossed you don't get any major side effects @frostyfingers

I used justtravelcover.com

@frostyfingers fingers crossed minimal boring side effects for you xxx

Knock those treatments on the head today! Mine is an early one today, 8.30. I remind myself that I was a fully functioning human being and at work well before this before cancer - and will
be again!

@dancingwhilstfacingthemusic @frostyfingers good luck today and with your treatments. In the (kind but unhelpful) words of those who don’t have cancer - you’ll smash it/you’ve got this (what am I to smash? / yeah I have fucking got it, I bloody know!). @ememem84 thanks for the insurance tip - hopefully will need that later this year.

Small update from me: have felt largely fine since mastectomy the week before Xmas. A bit tired the first few days but just a bit sore now - I think my nerves are knitting back together under my arm as I have some sensation returning and it’s a bit painful (only paracetamol pain level though). I’ve been driving too - drove to my immunotherapy appointment on the 27th Dec - the nurse was asking me about side effect and any changes since last injection and I had to call her back to tell her I’d lost a boob, I’d totally forgotten! I have full movement. The exercises feel fine.

I thought I’d be more up hung up about the appearance of being lopsided, but I’m not. I’ve been to the pub for a drink/pub lunch with friends, plus a couple of drop in Xmas drinks locally since having the op and didn’t even think about wearing a prosthesis. It’s a bit early (I still have dressings on and a seroma) to be fiddling about with new bras etc but I might just not bother unless I have a summer dress or just a t shirt on - it’s not readily obviously with a jumper/cardi/coat on as it’s winter. I’m a 36F so not small. It’s just no where near as visible or weird as I expected.

Anyone else just not bother with a fake boob?

Having a coffee with DH before treatment at 945.

Yes, I had a single mastectomy and stayed flat on one side. I'm also not small breasted - 38G. I am very happy like this. I didn't think I would like the sensation of an implant in my body. Also, I would have needed a reduction on the 'good' side to match a reconstruction, and I did not want to lose any sensation on that side if it wasn't necessary.

If you are exploring your options, Flat Friends UK (FFUK) have some lovely and very supportive Facebook groups where you can discuss with others. They do ask that you leave if you opt for reconstruction, but are happy to have people who are thinking through their options.

I've been wearing a prosthesis for work and find it very comfortable and nobody could ever tell from the outside!

At home and with friends I am very comfortable going without a prosthesis. I think when I start swimming I will probably do so without a prosthesis as I think it is more comfortable for movement etc.

I was very lucky as my best friend had a single mastectomy a few years ago and went flat on one side so I knew it was an option. I liked that it minimised the amount of surgery needed and that recovery time would be less etc. Also, she always looks so chic - she never wears a prosthesis, and always looks so great and full of confidence - that I had a wonderfully positive view of how it could be!

@Littlecaf it did make me laugh as I said to my children, before my operation, that when I had had the mastectomy I would be like Aunty X and have just one breast... they genuinely had not even noticed! 🤣

@londondragonite im a 36E but am having the reconstruction straight away and “rebalancing” at a later date. but suspect I’ll need a bit of “padding” to even things up post surgery.

i love my boobs (even the one that tried to off me) so am not sure I could cope emotionally without one. Although there is a chance I will need radiotherapy which could damage the implant my surgeon has said that in his opinion it’s better to do implant have the radio then do another surgery. If I went flat they’d have to reconstruct with skin from elsewhere and it might not take apparently.

I now “only” have three chemo sessions left. All going to plan I’ll be done by 21 Jan.

wishing all of you a peaceful new year.

Hello I've been lurking for a while after a WLE and sentinel node biopsy on 2 Dec. I was told yesterday that the surgery did not achieve clear margins, pathology found a HER2+ DCIS alongside the 15mm HER2+ IDC they already knew about and removed, and 1/5 nodes also positive. I was told the option re lymph nodes are clearance or radiotherapy and choice is mine.
I'm booked for a re-excision in a fortnight and it seems like the outcomes for lymph node clearance vs RT are similar but RT avoids risking lymphoedema? Affected side is my dominant arm.
I feel like I'll never escape level 1 of this hellish game! Currently minded to opt for RT
I also finally managed to extract what felt like a reluctant admission that I would need chemo and Herceptin - other consultants treating separate chronic conditions had already told me this, BCN was livid as apparently "not their place" to tell me this but the breast care team appears to treat information provision like a dance of the 7 veils - is that usual?
Would it be appropriate to ask for a clear explanation (now) of the next stages of treatment? I manage a team in a small company and need to give some sort of idea to them and my business partners about my likely input over the coming year.
I feel like a lack of information is really hampering my control freakery ability to forward plan

@SuboptimalSitu sorry you’re here. I was in a similar situation as the first op didn’t give clear margins and also found DCIs when the original info was that it was a single tumour (which was over twice the size on surgery). I had a second op and had to progress to a third where I opted on a mastectomy rather than another cavity shave. This was the right option as the margins weren’t clear to 1mm and if I’d had a cavity shave as third op I would have had to go back for a mastectomy.

I run my own business and as mine includes close face to face with children I’m off work whilst I have chemo. If my work were online I could continue although would have gone part time and assisted hours. I’m looking forward to a phased return, which I hope will be after Easter once I’ve recovered from chemo (about 9 weeks of treatment left, over 5 more chemos).

I know what you mean about 7 veils. Mine told me it was a need to know basis but I found that hard to plan for and ended up having to cancel a huge amount of business (fortunately to a trusted colleague for sick leave who will
step back and return my clients to me!). It seemed like every clinic some new jump scare came around the corner.

you can set out your needs and ask the team - it will be causing you stress on top of this so hopefully they’ll explain where they’re coming from. Sometimes there isn’t an immediate answer as it depends on histology or other factors.

@dancingwhilstfacingthemusic thank you for sharing your own experience. I was warned that the second surgery could become a third, and so on ... Although the light in the tunnel is an out of control freight train I just feel like I need to crack on with things!

@SuboptimalSitu I m another who had to have a second surgery because of margins. It was very frustrating and there then seemed to be long wait for the histology and next steps.

It does feel like the dance of 7 veils. We start off with the shock of diagnosis - mammogram, scan, biopsy info. Then there’s what is found during surgery. Then there’s the histology. Then there’s MDT meetings. And difference of opinions amongst clinicians. Shifting sands all the while.

In some ways you’re in the toughest bit. UNCERTAINTY is grim. And all you want to do, as you say, is crack on. One thing I wish I’d been told, and been able to hang on to, is that whilst it’s urgent it’s not an emergency.

As to decisions/choices regarding things like clearance vs RT etc, I found I often circled back to my immediate gut response. Read up, discussed with clinicians and family, looked at odds, accepted it was Hobson’s choice, and sort of ‘knew’ what was right for me.

Maybe a very open conversation with your consultant, looking to explore possible treatment routes, whilst accepting that until results are in from second surgery, variables remain and may persist?

@SuboptimalSitu sorry you are having a stressful time due to uncertainty. It seems pretty clear with a HER2 positive tumour you will be offered chemotherapy and immunotherapy as that is standard treatment now. The standard chemo ACT takes 16-18 weeks depending whether it is dose dense fortnightly x 8 or standard 3 weeks x 6 doses (or a weekly taxol). The Herceptin/Phesgo goes with the taxol part of the chemo and continues afterwards for up to a year. It is easier to live with than the IV chemo. You will get a plan once you meet the oncologists. I was lucky in a way that my surgeon was very up front and blunt. She told me on the day of diagnosis that I couldn’t work for at least a year (I was a GP) and that I should stop immediately.
I had one lymph node affected so they suggested a full axillary clearance. RT was not an alternative in 2021. It was all successful and none of the 30 other nodes taken out were involved. I get some pain and numbness in my arm and occasional forearm swelling but no lymphoedema so far. Like @GrannyGoggles I went along with what was suggested as I felt in my gut it was my best chance of a cure.
I would be asking for an outline plan I think, as you need to make arrangements for your business. I’m sure they can give you that even if the details are still sketchy till you have final pathology results after surgery. It’s so hard waiting for the drip feed! Sending sympathy.

@dancingwhilstfacingthemusic@GrannyGoggles @TopOfTheCliff thank you.
More information here than I've managed to screw out of the clinicians, so that's hugely helpful!

@SuboptimalSitu sorry that you’re here, but you’re in good company. My BC is HER2+ and it’s been hard but doable. My neo adjuvant chemo was TCHP (taxel - docetaxel & carboplatin) plus Phesgo (herceptin + perjeta). I cold capped through chemo and kept 60% of my hair. I just had surgery before Xmas - mastectomy + 4 nodes out (three were originally positive), but all had resolved on the MRI scan post chemo + herceptin - which I truly believe is a wonder drug.

I need Phesgo every three weeks until July but it’s miles easier than chemo. Then probably Tamoxifen for 5 years.

I think it’s all a shock when you start treatment, I wish the doctors had been more open about potential changes to treatment plans - communicating that x is the currently plan, but if y happens, then z is also possible. I’ve tried to look at it one step at a time and that flexibility is a good thing - it’s great that breast cancer patients have multiple treatments and options. I’m waiting on pathology results post surgery currently - but I’ve managed to work out for myself from the Breast Cancer Now forums that if I have an incomplete pathological response then the Phesgo drug would change to a drug called Kadcyla….a drug that has herceptin and chemo in it. The oncologist mentioned a different drug, but not what it was. Or that technically it’s more chemo.

Wishing you the best of luck, you will get through it.

PS incase it’s not obvious from previous posts, most normally fit and healthy people can continue work through Phesgo. I’ve had 8 session, 6 with chemo, 2 since finishing chemo and apart from some muscle pain and tiredness, I could probably go back to work if I wasn’t recovering from surgery.

But it depends on you and your chemo regime if you can continue to work through chemotherapy. I’ve met women on the chemo wards on paciltaxel who continued to work (from home) where they could. Personally I couldn’t have worked even from home on TCHP, it’s really “robust” as the BCN told me. I was really ill most of the time. Not sure about the EC chemo regime - my SIL had that treatment and also couldn’t work but she has other chronic conditions. Only you will know what’s right for you, but you might start to think about what is best for you, your work place and your family. I wanted to be in a position to start chemo ASAP so was upfront with my workplace (who have been brilliant).

@Littlecaf Thank you for the advice, especially re working. I am obviously hoping for minimal side effects, but am realistic that my response is unknowable, and could change throughout treatment. My business partners are all wildly optimistic that I'll WFH throughout and "it'll be fine" but I do need to be realistic about how much I will be able to contribute.

I'm after a bit of advice as to whether what I'm feeling is "normal/usual"? I'm day 5 after my first session of EC and feeling really rough - tired, cold, queasy, headachey and generally crap but I can't work out whether this is to be expected or whether I've picked up a cold from my son (although he has done his best to keep out of my way and I've barely seen him). My temp was just under 36 for a couple of days but is just over 36 now so I'm thinking this is side effects rather than anything else.

I'm not a doctor (obviously!) but EC.made.me.feel ill and like I had flu, so I'm erring on the side of side effects. I'm sorry you feel so shitty.

@frostyfingers Those symptoms, although miserable, do not sound alarming. Monitor your temperature and call oncology helpline if concerned. You have an awful lot to contend with, and that will be impacting on how you feel. Take care of yourself 💕

@frostyfingers. I did EC first and I'm now on weekly paclitaxol. EC did not agree with me although I know others who had minimal side effects. It's only now I'm not having it I realise how much it affected me. I was very nauseous in the first few days so once that passed I was happy but no where near 'full health' I just felt under the weather for some time and only got closer to normal as I moved into week 3.
I had all sorts of odd symptoms like hot flushes but they never seemed to peak. My heart went a bit fast but an ECG showed normal. I did ring the red card team a couple of times during EC..they were very good. Hope you feel more hunan soon x

Thanks all! I think part of it is that it’s the first time I’ve actually felt that I am ill, even after surgery although it hurt I could sort that, but this is out of my control. I’ve been in bed most of today and feel as feeble as anything. Hoping for a better day tomorrow 🤞

I was the same. I thought I was fine on EC but it really whacked me out in comparison to the pacli.

im in bed now though. I’ve reached the stage where I’m just so over the chemo and its cumulative effects. I am exhausted. And a bit achey. But I did go out riding today. Hooray.

After my first EC, I was feeling sort of okay after about a week (I was on dose dense EC, so every two weeks). But for the second, third and fourth, I only really felt okay the day before the next treatment 😞 I'm at a similar point @ememem84 , as the effects are cumulative I think my body is just over it! I also lost my appetite immediately I began chemo, and have lost 10.kg that I didn't really have to spare, which is not helping. Only three more to go!!

@BatshitCrazyWoman hoorah for 3 more to go!