Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Thanks Scandi Hope it goes as well as it can on Wednesday. I'm a C cup so should be OK with that but its good to know all the restrictions. They also told me virtually no risk of cancer and they only have a 1% per year fail rate so can last rest of lifetime. They did say you have to go in a few times to have them inflated which put me off but an easy option doesn't seem to be there. I am worried if they rupture say on holiday abroad is this an emergency, can it wait until return and if there's a problem will the NHS help or will it be we will not help / we will put you on a list for a year's time. And would swimming increase risk of rupture. I am right weight for diep (they said its max bmi of 30 to me) and CT was fine and no issues with surgery so far.

Fairy I am just right side - in some ways I wish it was both sides as I suspect they will look very different. But I want to not need high neck tops in the summer. To not see 1 breast cut off. To be able to just put a swimming costume on. But I also would be devastated if an issue with swimming. I just went on the DIEP Facebook site (not sure I would recommend doing that) and it was full of things that could go wrong. Though its always good to know things like the hip to hip scar is that for life or 2 years. The numbness around the belly button is that for life. The stomach bloating how common and how long, seeing a year but some places say 3 months. I am getting very mixed answers on swimming but don't know whether its people who just go swimming as a one off one time it hurt then gave up or people who swim 1 hour three times a week like me. Its normal the first times after surgery will be tough but not sure I want to feel numb around stomach and tight whilst swimming long term. I might ask on the swimming with cancer Facebook as those have long distance swimmers but not seen anyone mention it.

@FairyWren7 @Silkierabbit No one has mentioned the word expander to me so no idea what that is or means??

When my surgeon was telling me about the options and I was choosing, she seemed a bit against implants. She guided me between immediate reconstruction or flat.

She checked to make sure I had enough skin / fat on my back and tummy to use for the reconstruction, and said that I did. I was a LOT slimmer last summer before treatment (I gained 2.5 stone over the last few months...) She wouldn't have needed to check now, I am into the overweight category.

I chose to go flat because after all the chemo problems I didn't feel up to anything more than the absolutely necessary.

I do think it'd be nicer to have reconstruction though, I just didn't feel up to the surgery required.

Someone told me there are good swimming protheses. My hospital is so useless they didn't even give me any protheses till I badgered them, let alone a swimming one. I phoned them last week about it, but no response. Apparently we are entitled to a silicone and a swimming protheses after full mastectomy (flat).

No-one has mentioned an expander to me.

I also used to have a flat stomach until 45 or so then put a bit of weight on in lockdown (probably lack of swimming) and at first I thought diep would mean flat stomach back but getting mixed responses. The hospital did say I would look uneven after it and also initially tried to sell implants though I had impression that was to reduce the time they needed to work. I had to ask for a prothesis as well and did not get one until about a year after operation and no swimming one. And I wrecked that one but I did at least get my size in Ameona which was useful for buying their swimming prothesises. I bought two in the sale (quite why they have sales who knows) and I actually use them all the time as they are waterproof so much harder wearing and also better shape than fabric ones. They do help a lot swimming as before I kept tilting to side of cut off breast.

You can probably still get added to reconstruction waitlist Summer if feel up to it, in ours you only go on wait list a year after radio and then list is another year.

@SierraSapphire

Thanks for replying to me about hot flushes. How weird you get an electrical shock feeling when they start, they really are unpleasant things.

@TopOfTheCliff

Thank you to you too for replying to my question.

No oestrogen blockers, no (I am Her2+++ ER zero and PR zero). I know we discussed oestrogen blockers for TNBC, but AFAIK they aren't doing that for HER2 although HER2 has a very high risk of brain mets in comparison to all other breast cancer disease types - I read 50% of HER2 mets are brain and CNS...😨

My GP pharmacist called today and we spoke about switching from Amlodipine to Lercanidipine because of my swollen ankles. She read out some side effects and they also include hot flushes.

So I suppose I'm high risk of getting them then, what with the Phesgo and Amlodipine / Lercanidipine, plus maybe general cancer treatments etc

But I do definitely think the Phesgo is a big part of the hot flushes, considering they are worst in weeks 1 and 2. Also because this side effect started after several months on chemo; Phesgo started in cycle 5, after 2 months of EC chemo (no hot flushes back then). Interesting you also had that feeling.

@Silkierabbit

Thanks, that's a good idea actually, so I can wait and see, then in a couple of years decide. The surgeon did say I could have the reconstruction later if I changed my mind.

Radio was March this year for me.

Yes think its worth getting on the list Summer though it was quite an achievement to get on the list here, to get on list you also have to say you want the surgery and they said a year from radio to go on list but one said 6 months to me a year or so before. So I pestered to go on having done radio in August 22 and I got 1st meeting in Jan 23, CT scan in Apr 23 and wait list from June 23. You can also withdraw later. Also I found your feelings change over time - during the years surgery / chemo / radio etc you just get through each day and look forward to never going to hospital then once through you start to want your body and life back more. Though having seen full details I am now wandering if I need to be careful what I wish for. 😂I need a time machine to go back 5 years.

I think the electric shock feeling might be adrenaline @SummerCycling - I definitely notice an emotion can bring them on.

I've been to my meeting, which was a lot of gossiping, which was very nice, and business development planning with a lot of "shit what if I get a phone call about my scan and I can't do any of this". I've tried to turn off call forwarding now I've finished, but it seems to be stuck on, so oh well. I don't like getting any calls anyway!

It’s really interesting to read about people’s surgery choices. I’ve just had my last round of chemo and surgery is up next.

They’ve said I can have a lumpectomy (good response to chemo) or mastectomy along with full node clearance. I had thought I’d just do the lumpectomy but then the surgeon said that the don’t take away the original footprint of the tumour - just what is left after chemo. That has made me rethink.

However, I’m worried if I go full mastectomy with the node clearance then that’s a lot of pain at once! And it’s the school holidays which will put me out of action for longer. Plus I’ll be left flat! I think I’m having radiotherapy anyway so then that limits my reconstruction options unless it’s later. I just don’t want to be going back for more surgery. 🤷🏻‍♀️ The decision is mine which makes it worst - I just want to be told what is happening at this point! I don’t think there is a magic switch to tick all my boxes!

@SummerCycling I have come to the conclusion that worrying about recurrence is pointless. My first BC is triple positive so recurrence may be very late and brain or CNS as you say, while the second BC was triple negative and likely to recur sooner and locally or lung or liver. Or I might get a third cancer, or be run down by a truck when out on my bike. I am so bamboozled that I think I will just avoid trying to guess what will happen.

@Whattodotomorrow the surgeon will still want a clear margin around the live tumour at a lumpectomy and the long term outcome is no better with a mastectomy. I guess if you go for the latter it is just one operation whereas there is a risk they will need to go back with a lumpectomy if they don't get clear margins.

@SierraSapphire I hope you get your call soon. And that it is good news.

I have my regular phone review tomorrow. I can't decide what to tell them. I have a purple blistered toe and feel totally exhausted but I am coping just about and don't want to reduce the dose if I can help it. My bloods are good apart from raised red cell volume which I see from some furtive Googling (I know!) is associated with a better outcome, as is having Hand/foot syndrome. The next 15 weeks are going to feel very long...

Sending strength to all
Top

Hi all, I don't have breast cancer, I have stage 4 unresectable skin cancer, started immunotherapy a couple of weeks ago and I've just got my results from the first set of scans, all tumours except one have disappeared and the biggest one is not operable so I'm having surgery on Friday. I could not believe it when the oncologist showed me my scans.

Wow @CoachBeardsJane that is fantastic news and proof that the new immune therapies can work wonders. Welcome and good luck with the surgery. You must be in shock! But in a good way for once.

Now not not!!

You have no idea! It's been months of doom and gloom and the terminal cancer portion of the pip award because I was deemed not likely to live past 6months. It's been hell, but the immunotherapy has worked amazingly, I've still got a lot of treatment ahead but I feel like it's okay to put up with shocking side effects if it's working that well!

That's great news @CoachBeardsJane (I presume you mean now operable not not operable)

@TopOfTheCliff I'll only get a phone call soon if it's bad news so I hope I don't get it soon! Otherwise I have a call mid-August. I think if I haven't had a call by Friday (scan was last Thursday) I can relax a bit. It's my DM's 90th birthday then, I haven't been able to focus on it at all though I'm taking her out for lunch. MDT is Thursday and last time I had bad news I got a call early Friday morning, that would ruin the birthday lunch, but I'm trying to think positively. The cancer didn't show up on the original scans anyway...!

Coach Welcome and so sorry to hear your diagnosis but glad the treatment has worked well. Hope surgery goes as well as it can.

What I would push them for more information - operation wise lumpectomy is the easiest option though there is a risk of not clear margins when they do a second small surgery of about 45 minutes, I was told 30% risk. But mastectomy its the reconstruction that's the issue. I would question if there is a lower reoccurrence risk with different methods - I was told it was the same for me but mine was surgery first. I do sometimes wonder if I should of done lumpectomy but there said it was very borderline if possible and also said they would put back a smaller size and take from my back.

What I would go for what is lowest reoccurance risk and if equal lumpectomy. I would avoid full node clearance unless essential, that's the part that leaves you numb, the pain for me was only a week and there's a lympoedema risk. But if its needed then do it.

You can also ask for a second opinion on NHS if you want What and maybe they would give clearer guidance though just be mindful of delays, best to get cancer out.

I wish I hadn't had a total node clearance on the right. It has left me with a swollen arm and nerve pain and a horrid scar. All for one affected node with a complete response to chemo. The left side I just had a sentinel and axillary node biopsy and all were clear so they left it at that. Good scar and no swelling. But hindsight is a wonderful thing and I just accepted what they said I needed to get rid of the cancer. I think I am being overtreated!

Bloody fat fingers yes I meant now

Wow @CoachBeardsJane that's really impressive! Best wishes for your surgery 💐

Also want my right lymph nodes back, first time 3 taken one cancerous, that was fine then they took a further 22 in full node clearance and no sign of cancer at all. I've not got a scar or arm swelling but its a lifetime risk and I have numbness under that armpit which makes me not want to do front crawl as it feels weird. Stomps feet. I do generally get more water retention in face and I blame that, maybe completely unrelated but I'm still going to blame that 😂. Though tbf its good to know there's no cancer in there.

And the second op the NHS did at least pay for me to go private in the Nuffield, so had a nice room, own bathroom and nice food and a carrier bag full of meds.

I had a Phone call from the hospital today informing me of an appointment with my oncologist on Friday.
I'm on weekly bloods and reviews at the moment but the specialist pharmacist usually does than review over the phone, this is a f2f with my oncologist .
Oh FFS it just never stops!