Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I’ve been surprised about how understanding my partner has been, and how calm and patient - it’s my DM who has wound me up by repeating things or myths that were around in the 90s when a couple of her friends had BC! Maybe women are more emotional - that’s a flippant generalisation I know!

May I ask those who have had surgery - what was your conversation with your surgeon like beforehand? I have an MRI next week and then surgeon appointment the week after - do they give you options or just a recommendation? Am I supposed to know if I want a reconstruction (if I can)? I have no idea what to expect. I’m having chemo first (nearly done!) so the extent of surgery depends on how much the tumour has shrunk (I can’t feel it anymore which is a good sign) but I have no idea if I want a reconstruction using a implant or something else ? Two of the oncologists said the surgeon should be able to do a lumpectomy if it has shrunk and the other oncologist said they probably won’t be able to and I’d need a mastectomy.

I asked the BC nurse if she recommended any reading to prepare me and she said no!. I’m trying to keep an open mind with my main goal just to get it out of me ASAP!

@ememem84 good news all round for getting on with things.

I was a donkey on the edge through all the points before a firm plan and naturally upset when I had a couple of setbacks. Dh has been amazing but has had wobbles - it’s a lot for someone to deal with and harder for those watching in some senses. It’s brought us a lot closer. It’s been a hellish time all round with losing dad too. Dh lost 4 of his 5 aunts to bc, the 5th had it in later life. His mum somehow escaped but it’s always been a fear of his. I’ve asked him to get brca tested as he should have extra screenings for some cancers if he is a carrier.

@Littlecaf I guess it depends on your particular circumstances. I had a difficult path as I had a lumpectomy without clean margins, then a further shave without clear margins. I was given the choice of one more go or to have a mastectomy. Then it was a choice of flat or reconstruction, with or without nipple conservation. A hell of a lot to think about. I spent a week talking to friends and family, friends who had been through surgery and on here. I chose immediate reconstruction but to have the nipple removed as I thought that was another place that might not be clear.

As things turned out, there was no more cancer in my breast tissue or nipple on mastectomy (“clearance”) but as the tumour didn’t have safe margins on ops 1&2 to the edge of the breast, full clearance was necessary.

A friend did not have any choice due to the type of cancer/ tumour and had radio, chemo and then mastectomy. She is now having a delayed reconstruction using her own tissues and is on the plastics wait list.

At the consultation, I was given a very useful booklet by macmillan regarding breast surgery - this was very helpful to read to help me decide although the perfect breasts shown in the reconstruction photos don’t mirror my result - I’m pretty pleased though. Do also bear in mind that there is only a certain size of implant that is permitted in the uk. What with the skin and content removed, one side is a couple of cup sizes smaller than the other. They have said that I can have a reduction on the remaining breast but I am done with surgery for as long as possible - with a little pad in the side of my bra it should like fine once I’m out of a surgical sleep bra!

orders.macmillan.org.uk/products/mac11660_e14_r-understanding-breast-reconstruction

*I should add that the size difference is personal to my circumstances, you will differ and your surgeon should guide you based on what you’re having done.

@dancingwhilstfacingthemusic thank you! That’s super helpful to know what might be a possibility rather than going in completely blind. I’m sure they’ll explain everything and I’m totally focused on getting it out of me as THE priority rather than atheistics - I’d be happy with anything right now but it’s important to have one eye on the future.

I can also mentally prepare for being told “you can’t have a reconstruction” too. I have spoken to a few women who have had surgery - a couple had lumpectomies and/or reconstructions - my SIL had full mastectomy without reconstruction so she’s all clued up on the prothesis options too.

@Littlecaf .. I fall into the same category as @dancingwhilstfacingthemusics friend. I had mastectomy first and as I am due radio therapy after I finish chemo the trust I'm under won't do a reconstruction until after that time (and it's a year after radio ends!) I spoke to the BCN last week who rang me as its 3 months since my op. ( I'm half way through chemo now) I have always let them know my intention would be to go ahead with a delayed reconstruction. BCN said they always leave the door open for ladies to come back even if its years later. I'm not naive..there will be a waiting list but I want to be on the list as soon as I can. My DH is astonished I want to put myself through it, which surprised me... but for me I certainly want the option. We're all different so no right answer.

Thanks so much @somewhereonthe517 all three of the ladies I’ve met and chatted to on he chemo ward had reconstructions immediately so I know that my Trust do it in some circumstances. Thank you x

First paclitaxil done today. 1/12 tick.

Hey, well done you!!! If you are anything like me, the steroids will keep you going today and tomorrow (I'm on day 2 of my 11th week and feel like a superhero on day 2...) and you may crash a bit on the 3rd or 4th day.

Well done @ememem84 How are you feeling?

I had steroids with EC and they seem to have no effect on me 😂 Still really tired, steroids or not!

Well done @ememem84 1/12 tick!!

I’m having a minor meltdown! Paclitaxel can affect the liver but from my limited knowledge it resolves after chemo. My baseline ALT before chemo was 6x the upper limit (I know!) and now has increased further. I’ve had bloods done today and they’ve phoned me to check I’m feeling ok - I’m fine and have had a good week apart from tiredness. My consultant will review things and decide about my treatment tomorrow. I don’t know what the options are but am having a bit of a spiral worrying about something that is wrong with the liver and undiagnosed. I have had a liver ultrasound which was fine.

I wonder if the 3x surgeries/ general anaesthetics and taking painkillers for a few weeks have raised this ALT.

Hoping for a further good plan tomorrow. This is all tricky enough without this problem so early in my treatment.

Big tick @ememem84 ...
Keep us informed of how you feel. Do you get steroids and anti sickness with this? Every trust seems different.

thanks team! I’m feeling good so far.

i went in today feeling very anxious because new drugs etc. but nurses talked me through everything.

I didn’t cold cap today. I’m done with that bitch.

I was given antihistamine, anti sickness and steroids while there.

no anti sickness to bring home but I have a full box from last EC so can use if I need.

I had a nap this afternoon. Piraton/antihistamines make me sleepy. Have eaten. Am currently enjoying a zero alcohol gin and tonic.

Good news @ememem84 , fingers crossed you continue to feel ok.

Oh my word! Just watched Sir Chris Hoy on the telly and blubbed all the way through!!!

Me too @LemonDrizzle10

@dancingwhilstfacingthemusic very relatable wasn’t it. Full of hope too though.
Totally agree that the focus of life changes, so true.

I've been out being a mum taxi so missed the tele. I'm not sure I'm brave enough at the minute but will try at some point.
Glad you're okay @ememem84
Your line
"I didn't cold cap. I'm done with that bitch"
gave me a good giggle!
I need a bit of your attitude to this whole shizzle!!

Have a good night all xx

I’m generally speaking a very positive person. This diagnosis knocked me somewhat. But im all for the good days. The good moments. Finding the fun and humour in everything. Im
probably a bit annoying actually.

but year. The cold cap is a bitch. I did it for all my EC chemo as between that a and pacli it was the more more likely to cause hair loss given the dosages I was given.

had pacli been 100% likely to lose hair I would have continued. But the cold cap hasn’t worked as well For me as some people. So why put myself through the anxiety and quite frankly the pain of it.

i have it on authority from others who have been through this that hair can start to grow back a bit on the pacli. So im hopeful.

I don't blame you for ditching the cold cap, @ememem84 It's only because of the pep talk the lovely nurse gave me last time that I continued. I may or may not carry on. It didn't work for me, so at this point, I'm only doing it because it might speed up regrowth. But it's a hateful contraption so ...

Has anyone watched the Amy Dowden documentary? I empathised so much with her struggles with the cap (she stopped using it).

Glad you're feeling okay so far after your first pacli, I hope it continues.

I'm hoping during pacli I'll be one of those women with cancer doing yoga in a pretty headscarf ...!

I watched the documentary re Amy. Found it really helpful. And again emphathised re cold cap.

I asked DH yesterday if it came to it would he help
me shave my head to tidy things up! It’ll be a last resort as I really do not want to. But we shall see.

@Littlecaf I had chemo before surgery and my lump had shrunk though I could still feel it. The breast surgeon and MDT team looked at the MRI before my appointment so he came in with their thoughts and options. It was difficult because there were options! I opted for a mastectomy with DIEP reconstruction on his recommendation. He didn’t believe he could obtain a decent looking breast with a lumpectomy, so it was the aesthetic he was considering at that point. However, it also meant I would probably avoid radiotherapy which appealed to me. So I expect they will give guide you, but won’t push you.

@BreakfastClub80 thank you that’s really helpful. I hadn’t even thought about reconstruction before last week because nobody had spoken with me about it - because I’m so focussed on chemo. I’ve kinda felt all the way through that those of us who have chemo first get forgotten about in the process - the whole BC logistics journey is geared towards surgery first - from the chemo nurse questions, to scans, to even prepping for surgery, there’s always a slight “surprise” - “oh yes, this but won’t apply to you because you’re having chemo first” type of attitude.

I've just come back from having my wound checked and re-dressed and it's healing well which is good news. Another 3 days and the dressings can come off - yay, a proper shower at last! I've been told the pain I've been having is nerve rather than wound pain and could last a while, I was offered gapapentin but think I'll manage ok for now. I was asked how I felt about the appearance of my breast, which I haven't really considered since the op, I just said that at the moment it was the least of my concerns which slightly surprised the nurse I think, but maybe that'll change soon.

My follow up appoinment with the surgeon is in 10 days which will give me the biopsy results from the lump itself and the nodes so I'm trying not to dwell on that yet. The BRCA gene test results are also due in a couple of weeks as well so lots to look forward to....

That's interesting @Littlecaf what you say about the focus being on the surgery rather than the chemo process - I found the complete opposite. I was meant to be chemo then surgery but for various reasons they swapped it round. I was really well briefed on chemo, and even had my pre chemo conversation with the nurse about what to expect then suddenly everything changed and I was in the surgery system with no idea what was happening. It seems like the way it's handled is really different in each area.

Day one post pacli and I’m feeling good. Woke up feeling fresh and haven’t needed any anti sick meds at all today.