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Cancer support thread 90 - still the best threads no one wants to be on

1000 replies

LemonDrizzle10 · 14/09/2023 08:07

Last one filled up quickly!

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42
doublec · 10/10/2023 18:31

@SummerCycling Like you, I opted to stay flat after a mastectomy and my surgeon really tried to get me to consider as reconstruction because I'm still young, well, just under 50. But for me, there was no value in it, it's not a real breast , I didn't want an implant as it would need replacing at some point, and I just didn't want to use a piece of my own tissue as it would have meant more surgery, more scarring and most probably further surgery to get it right.

It's strange but I thought I would be far more bothered by losing a breast, but it really hasn't bothered me. I haven't even worn my fake tit as yet!

Am so sorry to hear some of you are having to wait for your reconstructions. That's really awful given everything you're going through. I know with my trust, they try to reconstruct at the same time as the initial surgery, but sadly, that's not any good for those wait for reconstruction.

SummerCycling · 10/10/2023 19:08

@doublec That's pretty much what I thought too, I think we had a very similar feeling about it. It wouldn't have been a real breast with any sensation around the nipple for example. Then there was the risk it could all be ruined by 3 weeks radiotherapy. Apart from those points, the main reason for me was that after chemo I felt too run down to cope with anything other than what was medically necessary.

I do wear my fake tit because being 34DD it really shows otherwise and I don't want anyone to know. I wear it for my back too because of the difference in weight on the left vs the right.

A reconstruction would look better, I definitely do think that. I also find it really important that women who want a reconstruction after cancer get one and that they get it within an acceptable timeframe.

@DollyDaisyDo That must have been amazing to hear after 5 years that your risk of the cancer returning was the same risk as anyone without cancer. Which type of breast cancer did you have, was it hormone sensitive, or Her2, triple / double positive, triple negative etc? Did they tell you what stage / grade you were / had? Please only answer those questions if you feel like it, I completely understand if it's too private. I'm just wondering because hearing that after 5 years must have been fantastic, and I'm currently struggling to stop being so anxious about recurrence!

SummerCycling · 10/10/2023 19:12

@Tilllly I hope your PET scan went ok? x

doublec · 10/10/2023 19:38

@SummerCycling Ha, we could be twins - I'm a 28f which in bra maths, is a 34d. Before this, I always thought I had large breasts, but am starting to think I don't as it's not noticeable that I only have one breast. As good as oncoplastic surgery, is, they just wouldn't be able to recreate my breast or nipple, and I would know it wasn't really anyway. Weirdly, my confidence has increased since my mastectomy. It's crazy really.

You've reminded me that I must go and get my 'proper' prosthesis. I still haven't claimed it yet. I do sometimes wear a knitted knocker to bed. I sleep on my front and it's a tad more comfortable with one in. e

breast prosthesis knitted knockers uk

Breast Prosthesis Knitted Knockers UK. "To relieve the needs of women who have had a mastectomy or lumpectomy by the provision of a knitted breast prosthesis"

https://www.knittedknockersuk.com/

DollyDaisyDo · 10/10/2023 20:32

@SummerCycling i don't mind at all. It was Grade II with associated high grade DCIS. ER positive (took tamoxifen for 5 years and been taking Letrozole for 4 - 1 year to go!). HER2 negative. I had a few lymph nodes cleared too. (I had to look this up on my notes, had forgotten the details!)

It was only in one breast but they agreed to remove both when I asked them to as there were 'areas of concern' in the other one.

Whattodotomorrow · 10/10/2023 21:56

Hurrah for the eyelash @lucysmam !! I have to say it’s my eyelashes return that make me feel like I look more ‘normal’ rather than the hair!

For hair regrowth I’ve used Lush rosemary and mint shampoo bar for whoever was asking about shampoo. It’s been good and I’ve just invested in a scalp product by umberto giannini that is AMAZING!

Thanks @DollyDaisyDo for coming back to share your experience. I totally get the children being older thing. In my head I’m constantly saying if I manage x years the children will be this old.

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Tilllly · 10/10/2023 22:19

lucysmam · 10/10/2023 14:33

I'm just popping in, very briefly before heading out, to let someone know I have a single new eyelash growing on my right eye 🤣 Had to tell someone & the girls faces would closely resemble 🙄 if I told them!

I hope all your days are going ok, I'll be back later to catch up properly 🙂

Woohoo!
Go eyelash 🤗

Tilllly · 10/10/2023 22:23

SummerCycling · 10/10/2023 19:12

@Tilllly I hope your PET scan went ok? x

Thank you 😊
It did
They weren't great tho, so glad you lot explained it to me cos no one there did. I was supposed to be 1-2.30. Got out at 4...

I did get a bit agitated when I first went in the scanner, but I settled when I realised I could, for the most part see above it into the room

One of my eyes has gone a bit funny though, it's sort of swollen underneath and to the side, as if there's some extra fluid there. Don't know if that's anything to do with the scan or just some random weird thing going on. Not really happy about it though

Silkiebunny · 10/10/2023 22:54

Glad your scan went ok Tilllly, hope eye resolves.

Dolly How do you find Letrozole versus Tamoxifen. I am considering changing over as Letrozole has higher success rate though they are awaiting bloods in November. Tamoxifen I find manageable. Thanks

Thanks Summer. I did wonder about France but I think would need to be there for 5 weeks minimum plus waiting and don't think it's that practical. But am thinking of things like that though in reality likely to just wait. I will get hair done and try and lose more weight and that might help me re appearance.

Thanks everyone for the support.

Top I saw Waverley is by you, down in Plymouth on her way back to Glasgow.

Silkiebunny · 10/10/2023 22:56

I also had the you are a young person thing. 😂 I got cancer at 48 but they talk to me like I am 20 though in chemo room I felt that age as most were 70 plus.

Octopus45 · 11/10/2023 06:11

@Tilly glad your scan went ok. Hope your eye goes back to normal soon.

Florabritannica · 11/10/2023 08:14

@lucysmam
I have written you a celebratory eyelash haiku

From darkness and loss
A single lash
Spring growth by the lake of the eye

dotty2 · 11/10/2023 08:17

@EachandEveryone How are you doing today? I got distracted by the eyelash good news (!) and forgot to commiserate with you. That sounds v frustrating.

FairyWren7 · 11/10/2023 08:55

@Florabritannica

Thats rather a lovely haiku!

Good news @lucysmam

Its great when your hair grows back. Mine is going well.

tothelefttotheleft · 11/10/2023 09:05

@Octopus45

Thinking of you today.

lucysmam · 11/10/2023 10:08

Thanks for the eyelash love 🤣 There are more tiny stubs poking through today!

@Silkiebunny how very frustrating!

@EachandEveryone that would fry my brain too.

(Sorry, going to post then read next page!)

lucysmam · 11/10/2023 10:16

@Whattodotomorrow is the lush shampoo bar designed to assist hair growth? And, which UG product did you buy? I've been considering whether to buy the Nioxin again or try something else.

@Tilllly was the PET scanner similar to CT? Hopefully your eye issue turns out to be a non-issue and it sorts itself out 🤞

🤣@Florabritannica thanks.

@FairyWren7 the hair on my head's doing well, the rest, not so much 🤷‍♀️ Tbh, not thinking about hair removal is quite nice!

No side effects that I've noticed so far from the new meds - fingers crossed it stays that way!

I'm just pottering & finishing off a couple of doll sets today...once I sort the printer that dd1 jammed the other day 🙄

TopOfTheCliff · 11/10/2023 10:27

@lucysmam it really doesn’t make any difference what shampoo you use the hair will grow anyway. Something good for your scalp is best. I bought some Mane and Tail horse shampoo that was being recommended because it amused me but Head and Shoulders was just as good.

Florabritannica · 11/10/2023 10:38

@lucysmam Let me know when the tiny stubs merit another haiku!

Tilllly · 11/10/2023 11:36

@lucysmam
It was a little bigger and a little noisier but it's manageable because you can see out one end or the other
It wasn't great, but if I had to have another one, I wouldn't be worrying about it. You would be fine.

isaxx · 11/10/2023 13:51

Regarding reconstruction, it is a very personal decision and everyone should be entitled to have or not have it and, if the former, in a timely manner. So I can only speak for myself, but my experience may be useful if not sure about DIEP vs. implants.

There are, as with everything, pros and cons to each. DIEP is a bigger surgery and leaves you with more scars. The additional scars are something one tends not to be prepared for, as the focus is all on the breast. I was somewhat taken aback by this. They do (I am told) fade with time and sensation along the scar should come (at least partially) back, but it does involve adjusting to a slightly changed abdomen as well as the changed chest.

I had DIEP as an immediate reconstruction. A friend of mine had implants - which her body rejected a couple of years later and eventually got fed up with endless attempts to salvage them and replace, and decided to go flat. This served as a cautionary tale to me (though it is of course just one person's experience). My DIEP breast has so far held up well, is very close in shape and size to my other natural breast (well, I can see a difference, but then perfect symmetry does not even exist in natural breasts, so this is pretty damn close enough). It feels very soft and now four months post operation, feels like 'my' breast. There is some lack of sensation but it moves not too differently from the natural breast, the texture is similar and it is warm to the touch, so feels like part of me now (which of course in a way it is). I would like to have my nipple reconstructed so that I can go bra-less under a T-shirt again (I have never been a fan of wearing a bra), but in terms of body image, I am ok with it as it is already, so don't mind waiting for the nipple. In reference to second surgeries, some surgeons manage to get things close to right the first time, so you won't necessarily need symmetrisation surgery. They work out the size of the reconstruction based on the the weight of the mastectomy, so it can end up being very much the same weight/size as the breast they removed first time round, avoiding the need for surgery later (unless there is not enough tissue to take from the abdomen and they need to reduce the natural breast, say). So, in my experience DIEP has not been too bad and is worth it (out of the range of sub-optimal choices available), with the caveats above and provided of course there are no complications (something so unpredictable - in my case the 8 hour breast reconstruction caused very little post surgical problems compared to those that followed from the lymph node biopsy - go figure).

isaxx · 11/10/2023 13:52

@TopOfTheCliff even if your cheerfulness is a dubiously acquired defense mechanism, it is still a good one! I could do with that!

Octopus45 · 11/10/2023 14:29

Hi, I had my appointment today. My cancer has been caught early, the cells are grade 2. Its also positive for oestrogen and progesterone, but not for the h protein (whatever its called). Due to the location and I me having smallish breasts, they might not be able to save my nipple, so it might be a mastectomy followed by immediate reconstruction, instead of a lumpectomy. If I have a lumpectomy, I will need radiotherapy, if its a mastectomy maybe not. I also need to start taking oestrogen inhibitors, but have been told to wait for a couple of weeks, cause of my hormones settling down after being on HRT and the diagnosis etc. Due to them not being sure I've got an MRI next week (not sure which day yet and I've got another appointment which will come through a week on Wednesday to discuss surgery. Feel totally drained, but a little bit relieved cause at least I know what I'm dealing with now, although I know this could change.

Florabritannica · 11/10/2023 14:40

@Octopus45 At least you have a plan now - for so many of us the waiting is the worst part.
Take care of yourself and do whatever you need to do to stay sane before the next stage.

TwigTheWonderKid · 11/10/2023 14:41

Octopus45 · 11/10/2023 14:29

Hi, I had my appointment today. My cancer has been caught early, the cells are grade 2. Its also positive for oestrogen and progesterone, but not for the h protein (whatever its called). Due to the location and I me having smallish breasts, they might not be able to save my nipple, so it might be a mastectomy followed by immediate reconstruction, instead of a lumpectomy. If I have a lumpectomy, I will need radiotherapy, if its a mastectomy maybe not. I also need to start taking oestrogen inhibitors, but have been told to wait for a couple of weeks, cause of my hormones settling down after being on HRT and the diagnosis etc. Due to them not being sure I've got an MRI next week (not sure which day yet and I've got another appointment which will come through a week on Wednesday to discuss surgery. Feel totally drained, but a little bit relieved cause at least I know what I'm dealing with now, although I know this could change.

@Octopus45 that sounds like relatively good news. Good that you are moving towards a plan and also that it sounds like you are aware that things might change when they have a bit more information from your MRI.

I have tiny breasts but they were very keen to try for a lumpectomy. Then when I had the MRI, the lump was bigger than it had appeared on the ultrasound and it looked like it would need to be a mastectomy. However, I had 6 months of Zoladex and Tamoxifen which shrank it just enough to allow them to do the lumpectomy although I would have been "happy" either way.

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