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

[LemonDrizzle10]

New thread - old one nearly full!

Gosh lots of love @frostyfingers for Christmas and beyond, it’s all so hard huh. I had a conversation with an oncologist turned GP who said if he could get a cancer he’d chose breast cancer as it’s easy to treat. Yeah thanks.

My surgery went well but I think I have a seroma. I can hear it sloshing about, super weird. The surgery nurse gave me loads of instructions about what to do but I was a bit out of it still after the GA so can’t remember if she said to see the breast care nurses next week or not, no idea what to do about dressings either - I wish they’d given me a leaflet! DP wasn’t allowed on the ward so my usual back up memory/note taker wasn’t there. There’s a drop in clinic next week so will go to that. Too much information and nowadays you’re expected to do it all yourself. So exhausting.

@Littlecaf I had a seroma after my surgery, it was pretty uncomfortable. I did all the exercises but in the end had fluid drained off it twice which seems to have done the trick.

I hope your surgery went well, I found the g.a wiped me out for much longer than expected, I've had loads before (7!) but the ops were all much shorter and I guess that has a bearing.

My surgery was a wide margin lumpectomy with advancement flap and dressing wise I had the compression dressing removed the next day, then had a check up with the breast care nurse a week later and she took the main dressing off and re-applied the steri strips which I was allowed to remove in the shower a week later.

Thanks @frostyfingers - the nurse said something about taking the main dressing off in two days and the other one in 5 days but that seems awfully quick for a mastectomy - it’s not leaking or anything and feels ok so I’m just gonna leave it until I get to the clinic next week. I’ve been doing he exercises fine and feel ok considering (which Id noticed most people say they feel ok unless there are major complications. It’s all a bit numb and my shoulder hurts but it’s ok.

@frostyfingers you’ve got an awful lot thrown at you. I’m glad there is help. People say the most brainless things to us when our worlds are turned upside down (there is a thread somewhere).

I had seromas and they are bloody painful. Thinking back, I’m amazed at what I got through a day at a time and I hope to do the same with this chemo.

Those of you with review mirrors who didn’t go flat, did you feel that any fat “grew”/ deposited on your boob? Over my implant is a little wrinkled and I’m hesitant to consider a fat transfer. Not an issue right now as everything is still healing but I’m interested to know how people settled after surgery.

@Littlecaf its amazing that they come to tell you a load of stuff after surgery and expect you to remember! I recall wishing for a leaflet with some personalised notes on.

Dancing Hope chemo isn't too bad. I had DIEP reconstruction this September (delayed) and my surgeon says it takes a year to settle in shape. I have not had any fat gain on it.

I didn't have pain during chemo in breast area but neuropathy would add up for that - it can manifest as pain, mine was more numbness and tingling and I got it in my face which has never gone. Rest improved a lot a few months after chemo and face thing is just a bit tingly / burning. It did make me nervous re cancer but scan was clear. Anything like that report to chemo team as they may be able to adjust the dose to give less side effects.

Sorry things are so difficult Frosty

Anyone finishing treatment you are very welcome to join our Great Recovery thread. I finished treatment except Tamoxifen and DIEP which now had this Sept in Aug 22 and now life is so much better and I don't think about cancer much. My appearance is also finally back following surgery and hair back after chemo and finally not curly. It shouldn't really matter but it was just one more thing.

Wishing you all the best for the Christmas period.

I'm being a bit lazy here and rather than searching the posts hoping you lovely people can help me out!

Chemo starts next week for me and I'm just wondering what shampoo you recommend, and what sort of regime re hair washing etc? I'm having my hair cut tomorrow, to go a bit shorter, but am completely in the dark about how to look after it before it goes (assuming it does). I'm aiming to try the cold cap but any tips would be much appreciated.

Just come back from post op appointment with my consultant with mainly good news.
Sentinel nodes are clear and no cancer in my left breast.
But the right which she did quite a large lumpectomy hasn't removed wide enough margins.
So I have a choice between going for another lumpectomy with the chance I might end up with a mastectomy anyway, or just going straight to a mastectomy.
I'm inclined to go straight for the mastectomy because I've been dealing with set backs and delays since August and just want it all done with.
Fortunately I'm not looking at chemo although tablets were mentioned but I can't remember what they were.
Possibly radiotherapy too.
So on balance I was pretty relieved with what I heard today.
What have you done or would do in my situation?

@drivinmecrazy That sounds reasonably positive although why does it seem that as one thing gets dealt with and you think you're almost there then up pops another?

I'd be inclined to the mastectomy too, another lumpectomy, especially as the one you had was already quite large wouldn't appeal to me. Presumably you don't have to make a decision too quickly? Maybe draw up a list of any pros/cons of each procedure and mull it over for a while. Tricky one though.

@frostyfingers I’m cold capping (& also using cold mitts/ socks). I had my waist length hair cut to an Emma Thompson and that’s really helped management. My hair was sent to little princess trust.

I was told to use simple shampoo. Wash hair in cool/ lukewarm water and air dry. Use a wide comb to style. I wash mine the day after chemo and then midweek. It’s ok, not quite enough for me but it works. I use hair bands to stop it flopping everywhere and getting greasier faster. Apart from a small bald spot the size of a 10p on top of my head I’ve kept it so far although realise I may lose more when I change from paclitaxel to EC.

cold capping has been ok. Make sure you have a warm couple of layers - I have a knitted cardi and slip the arm back on after they’ve accessed my Picc. I also have a poncho over the top and a blanket. I know this sounds a lot but for me, if my body and arms are warm I can tolerate the rest more easily. I wear my earbuds under the mask and listen o podcasts. Once you get through the first 15 mins or so it settles down.

@drivinmecrazy cautiously optimistic for you and hoping you can avoid chemo.

I’ll tell you my story and hopefully it’ll help you think through your own situation. Everyone is different.

I had a lumpectomy and margins weren’t clear. I went back for a shave and the margins still weren’t clear. Both times they had got the cancer but hadn’t got enough space between it and the edge of the breast. I was given the option for a further cavity shave or a mastectomy, also having the choice of going flat, immediate or delayed implant. My poor head was spinning.

I spoke to a lot of friends in real life and online, many who had had the same experience. I decided enough was enough and went for mastectomy, including nipple as I didn’t want anywhere for further cancer to hide. This was the right choice in my case as even with the mastectomy, margins were still within 1mm of the edge, so if I’d had a cavity shave, I would still have had to go back for a 4th op.

I thought long and hard about flat or reconstruction. My female consultant suggested that if she were in this position she would go for mastectomy and immediate reconstruction. Having talked to a friend who is having a delayed autogolous reconstruction, she said if she’d had the option for immediate reconstruction she would have strongly considered it. The clincher was considering how I would feel when I looked down after the op and in the weeks after. Would I be happy flat? For me it was a no, I’m an F cup+ and love a bit of cleavage. I’m happy enough with my new boob and it continues to settle down. I have the option of a partial prosthetic to use my “old” bras/ post-surgery ones and I look the same when I’m clothed - including a cleavage! I am offered a balancing operation after chemo but I’m happy as I am with no more surgery. I’ll get a nipple tattooed and crack on with life. A heads up that I have no sensation in the boob and it can at times feel like I’ve a potato down my bra but for me having the shape is worth it. I still go to sleep holding this boob and it feels like a real one to touch.

There’s only so big that they can use an implant and the reconstruction may not look like the very lovely Macmillan book’s photos. When I consider how I would feel if i had gone flat I know it was the right choice for me.

reconstruction may be based on whether radio is needed as this can lead to implant failure. I’m told that as they’ve removed all of the breast tissue I won’t need radio. I hope that’s the case - chemo is plenty! Waiting on the go ahead for Christmas Eve treatment following bloods today.

I agree with @dancingwhilstfacingthemusic on the cold cap advice. I didn't use the Simple shampoo because it instantly tangled my hair once applied (most shampoo that's clear, rather than cloudy, does this to my hair). You don't want any tangling! I use an Aveeno one now.

Despite cold capping, my second EC treatment started a shed that took the majority of my hair. I'm continuing cold capping for the sake of my follicles. I'm now more than halfway through 12 paclitaxel treatments, and it's started growing back.

@frostyfingers good idea to get your hair cut shorter - just makes managing it easier for the moment. I washed my hair twice a week and air dried, brushed with a wide tooth comb - it’s not pleasant when it starts falling out but concentrate on what you have on your head, not what falls out. There will be days when it’s coming out in handfuls but most of the time mine just fell out in annoying strands and when I washed/brushed it. There’s a Paxman Scalp Cooling Facebook group which is helpful, although it’s mostly American women/men, but take a look.

My mastectomy was last Thursday and I popped into the clinic today to get my dressing changes and seroma checked - all ok (small seroma, should go away). Did Waitrose shop after and had an epiphany in the queue (so Mumsnet!) - I don’t think I want a reconstruction. I’ll probably change my mind, but I’m not sure I can do all this shit again. I need radio so reconstruction would be a least a year off and if it’s ok with one boob then so be it. I dried myself out of the shower yesterday and went to lift the boobs up, whacked myself in the face with my left hand….it does feel weird to be able to see my stomach though.

@Littlecaf I’m absolutely with you on the no more messing. It’s enough with all we’ve been through. I’ve a friend going from flat to reconstruction using her own tissues 6 years after her original op and treatment. There’s no rush to choose.

Has anyone else seen the post on AIBU called cancer attention seeking?

Some really disgusting comments on there. Could do with people more eloquent than me telling them what's what.

Hi,
I posted a week or two back, and have been checked out, and officially told I have lobular cancer, and will need a mastectomy, and all (did he say all?) of the lymph nodes out on the same side as they have cancer in, too.

The problem is, I have other health issues, and they aren't sure I'm well enough to have the op or the chemo they recommend.

Is it normal to have to have an appointment with the anaesthetist to get the go-ahead?

That's where I'm at now,
It seems it was all systems go, now nothing; just waiting.

@catonmat. I 'had' mixed lobular and ductal in my lump which was removed by mastectomy. I also had a full lymph node clearance. They take them all if they do that as they literally take a chunk of flesh where the nodes sit. I liken it to getting the whole tub of grapes rather than picking them out individually.
It sounds like they have given you a load of info that is sometimes difficult to take in and I always had questions after every meeting. I would imagine all our cases go before the anesthetist in one form or another. I saw mine on the day of surgery and had to sign consent forms regards the risk of anesthesia before my op. I remember her because I was worried about not waking up! It was my first GA. She talked me through the drugs they use now which I actually found fascinating and it stayed with me..so yes I met my anesthetist. It maybe yours wants to see you a bit before re your other health issues. But I had no idea the drugs they use to anesthetise me were specific to the issue / cancer I had. I thought one drug did it all. Who knew?
The fact that they are being so careful with you is good and they seem to have so many chemo drugs now they can use they are probably trying to balance it's toxicity with its effectiveness to find the right dose for you. Don't be disheartened. We go to the worse case scenario first don't we. I'm sure your treatment plan will be made clear to you once you have met with these folks and they must have people with other health considerations alot of the time.

I had a search for it and there a some choice comments huh! But there’s also a lot of people saying lovely calming sensible things, so I haven’t given up of kindness just yet.

Thanks, somewhereonthe517

I really appreciate it.

I'm sorry, all, if I'm still a bit "Me Me Me".

I'm still learning stuff. I suppose it's on the job learning.

I have my appointment for mastectomy now.

I had already decided that mastectomy was the option, due to the shape of the lump, like a starfish, and the size, 6cm.

I haven't been told a stage or grade - does that matter, I guess not, but had kind of expected it.

Thanks again, very much appreciate your input, and will try not to keep asking things.

@catonmat. First of all NO apologies! Your post does not come across as me,me,me! This is the place to ask! I certainly did. I was always asking questions so feel free!
I have never had the hospital (surgical team or oncology) give me a stage like they used to. I was given a grade though and your trust might be different. I think years ago staging was all they gave you, but now they take in so much more to complete your diagnosis. They look at all your hormone status so Estrogen, progesterone and HER2 and whether they are positive or negative. Tumour size, lobular or ductal..is it in your nodes etc.

After my initial biopsys at the very first clinic I was ER and PR positive (HER2 negative) and I had more than one suspicious node. I was told the approach was surgery first and then chemo was likely if in nodes..which mine was.

My letter post surgery and setting out my treatment plan (chemo, radio, hormone blockers etc) was where I got the most detail as they had the full histology and tumor sizes (I had two pieces) from the boob they took and the nodes they took. They wrote it to me in the TNM (tumor, nodes, metastases) format on my letter. It's not something I look at very often but I have it to refer to if I need it and I don't know if that is standard approach to use the TNM reporting system or just my trust.

People say we are not statistics and no two bodies are the same. Interestingly though my mum had BC in her 50s and is now 80. I hope I do inherit the good bit as well as the bad!

Glad you have your mastectomy date. You are already on the way to sorting this x

I hope everyone had a peaceful Christmas.

I’ve got ds poorly with an ear infection and dd is playing up. As is DH. He is frantically decluttering the house and reorganising. It doesn’t bloody need doing. I swear he thinks I do literally nothing. He’s pissed because I’ve told him my mums on standby to come to Tenerife with me and the kids in feb. Because he still hasn’t renewed his passport. Our passport office here is closed until 6 jan. And then won’t accept express applications. Because ours go to the Uk for printing we also can’t do a same day apt. The wait time is 6 weeks. But if he gets the info and does it online they will have it when they reopen. We travel 7 feb.

he’s known about his passport expiring since April.

cancer news: pre surgery forms etc have arrived and I’ve got pre op appointments. Is it normal to have them a month before surgery? Also 4 more chemo treatments to go. Next one 31 dec.

Oh @ememem84 your DH is being ridiculous, he just needs to get on with it!! Don't blame you for having your Mum on standby. Could his decluttering be a displacement activity because he's worried about you, do you think?

I have bloods on Thursday, chemo on Friday - four more to go for me, too. I haven't even had a discussion with my surgeon yet! I've got an appointment with him the day after my last chemo. I'm seeing the oncologist again on the 10th, and will be having an MRI before chemo ends, as well as an echocardiogram to see how my heart is holding up. I've had a cold for about 5 weeks now, and am pissed off with it 🙄

Oh bloomin heck @ememem84 that is A Lot going on mate. I signed my consent forms with the surgeon about a week before surgeries. Hope the holiday gets sorted - have the insurers played nice about health things?

That cold better bugger Off @BatshitCrazyWoman , it’s been hanging around for way too long.

It’s brilliant that you both only have 4 to go. I’m having the 11th of 12 paclitaxel tomorrow, with 4 EC to follow from some time in January. It feels like we are coming through this nonsense.

@BatshitCrazyWoman It could well be a displacement.

@dancingwhilstfacingthemusic yes all insurance is sorted. Cost me £350 for a single trip. But I’m covered. That’s the main thing.

Pacli session 9/12 tomorrow. So that’s awesome. It’s been hard whilst the kiddos have been off school but it’s been nice to spend so much time with them at the same time.

I hope everyone has had a nice a Christmas as possible in the circumstances. Ours was ok, and we managed a trip up to see my relatives which was a really good break from all this cancer shit. DH's chemo starts on 8th Jan - what a fun household this is going to be.

I had my first EC chemo of 6 this morning, it's so odd sitting there in pretty good health watching what is effectively poison being put in. I used the cold cap and didn't find it too bad so we'll wait and see whether that works or not. I had a much shorter haircut than I asked for from the hairdresser but have decided that it's good prep for what's to come, and it certainly helped this morning. My friend said "oh don't worry it'll grow back soon" clapped her hand over her mouth and apologised - and then we both had a good laugh.

I'm sitting here waiting now for any side effects to kick in - do I feel sick, am I more tired than usual, do I feel different in any way....not yet! But I guess it will come. We have family here for supper and then I have a clear diary in anticipation of feeling rough shortly.

Sorry to hear of your difficulties @ememem84 - your DH definitely sounds like a displacement thing, it's so frustrating though when you have a million other things to deal with, hopefully the Passport Office will come good.

I was led to believe that a pre-op assessment is good for 14 days, longer than that and it has to be done again. I didn't sign any forms until the morning of surgery.