Page 19 | Cancer support thread 90 - still the best threads no one wants to be on

AllotmentTime · 08/10/2023 09:24

@FairyWren7 sending you lots of hugs. Two immediate questions spring to mind:

could the new drug be messing with your head/mood?
is your DH normally decent? If so, talkkkkkk to him, he can't help if he doesn't know there's a problem. You sound lonely from your post, is there someone you can meet up with IRL and talk to and spend some good time with? 💐

@Tilllly sorry to see you here and good luck with your tests. Hope they can come up with a decent plan for you.

@TopOfTheCliff @Florabritannica have fun! Take a photo for the rest of us 😁 of a thumbs up or something if you don't want to post anything identifiable.

"Different degrees of awfulness" is a great phrase.

Right, today I need to motivate myself to get up and do some yoga or something. Chemo tiredness is not good for my back or my post surgery healing. I haven't exercised in weeks ☹️ need to get back into the habit!

lucysmam · 08/10/2023 09:51

@TopOfTheCliff @Florabritannica enjoy your meet up!

@FairyWren7 I'm so sorry you're feeling so sad, sending gentle hugs your way.

@Tilllly sorry to see you here. Hopefully a decent plan can be made for you.

First Abemaciclib taken this morning. I need to set myself up a rolling reminder to take them on an evening I think. That's when I struggle with remembering things!

I'm just waiting for the girls to get up and move. Dd2 was up to watch someone's stream of Adele in Vegas last night, again, but I think I hear her moving about so I'll head up at ten and check/motivate them. Dd2 wants something to wear to the Eras Tour film so we're heading to town I think.

Hope you all have an alright day 😊

Silkiebunny · 08/10/2023 09:58

Fairywren If you don't want to be photographed I think it's perfectly reasonable to request that. I hated being photographed after chemo and still do so I request I am not photographed. Sometimes people are a bit grumpy about that but it should be a person's choice and it solves the issue. The other thing is to get good prothesis, with good ones you can't tell. For me it's my hair as well as one removed breast but that's the worst thing as you can't not have hair in it.

Silkiebunny · 08/10/2023 10:01

I think Fairywren the exercise helps but if you can make it more enjoyable it's better so planting flowers might give more pleasure than weeding though need one before other. And like with swimming I swim with DH so can chat and also were there is sauna, steam room and jacuzzi.

BreakfastClub80 · 08/10/2023 10:47

@FairyWren7 it sounds to me like you’re grieving almost, perhaps exacerbated by your DH’s current hobby. And totally understandable. Talk to him about it if you can but mainly, be kind to yourself. You always sound so upbeat and hopefully this will pass 💐.

Silkiebunny · 08/10/2023 10:54

Yes would agree with BreakfastClub it is like grieving as well for your pre cancer body and photos to me show cancer via my change in appearance. Though with breast now I have good prothesis from Ameona, I use the swim one all the time you can't see on photos and that helps that. But my face and hair you can see. I want my old appearance. I don't totally know the best way to deal with it but quite a few on here have struggled with this but others seem to embrace short hair. I also associate short hair with being old, turning into my Mum. Counselling is another option.

TopOfTheCliff · 08/10/2023 13:14

Sorry no photos of me and @Florabritannica . We were too busy chatting for that. I certainly enjoyed myself, and it was lovely to put a face to a name. I enjoyed my eggs florentine too. I hope we can meet up again next time I visit DM. Maybe next time we will both be finished with chemotherapy. I visited the lovely boutique opposite and found some great clothes for when I have lost weight so I will need to go back there.

@FairyWren7 just to add to what others have said you are allowed a good wallow. Your DH probably doesn’t realise he is upsetting you with his lovely young things. I hope you feel better soon. Ups and downs seem to be part of the journey.

Tilllly · 08/10/2023 13:50

@FairyWren7
You need to start googling 20 year old stud muffins, give him a taste of his own medicine

Better still, get a Calendar

Tho I completely understand where you're coming from, and his own issues don't give him license to be insensitive. Get him told

Thank you all for the welcome, not that any of us would want to be here

Englishrosegarden · 08/10/2023 14:13

Just dipping in to say Hi to everyone. I was diagnosed in early July with BC reccurrance around the scar of my lumpectomy - I had that done 6 years ago. I've had shitloads of scans and apparently have a lung nodule - may be cancer, may not, they can't biopsy and 3 things in my spine that may or may not be cancer, again can't biopsy.

Originally I was supposed to have a mastectomy but now they are saying maybe chemo. BC consultant has discharged me and supposedly I will be seeing someone else. That was over a week ago, still no contact and they don't answer phone.
So more than 3 months down the line I still have no definitive diagnosis and haven't started any treatment. They did give me some Letrozole a couple of weeks ago.
I just can't believe that this is the state of cancer treatment in my county (Herefordshire), it's beyond awful, every day my cancer is probably spreading.
Today I am feeling very down and pessimistic and OH is being a dick which is not helping.
Sorry for the essay, I just needed to let it out somewhere safe.
Hope you are all having a better day than me.

Silkiebunny · 08/10/2023 14:23

So sorry to hear that English rose Chemo does sound more sensible if they think it's cancer though I had lots of things show up on my scan and they decided in end weren't cancer. I would try the complaints route to hurry things up. Hope you get treatment soon.

lucysmam · 08/10/2023 15:30

We've just got in from town & I've decided I fixated on the diarrhoea side effect unnecessarily for some reason. I didn't get caught short, but for some reason my brain had a blip & decided to build it up so much I was questioning taking them 🙈 Head wobble given & we're back on an even-ish-keel & I'm wondering if I can squeeze in an hour of crafting while tea cooks!

Tilllly · 08/10/2023 17:24

Englishrosegarden · 08/10/2023 14:13

Just dipping in to say Hi to everyone. I was diagnosed in early July with BC reccurrance around the scar of my lumpectomy - I had that done 6 years ago. I've had shitloads of scans and apparently have a lung nodule - may be cancer, may not, they can't biopsy and 3 things in my spine that may or may not be cancer, again can't biopsy.

Originally I was supposed to have a mastectomy but now they are saying maybe chemo. BC consultant has discharged me and supposedly I will be seeing someone else. That was over a week ago, still no contact and they don't answer phone.
So more than 3 months down the line I still have no definitive diagnosis and haven't started any treatment. They did give me some Letrozole a couple of weeks ago.
I just can't believe that this is the state of cancer treatment in my county (Herefordshire), it's beyond awful, every day my cancer is probably spreading.
Today I am feeling very down and pessimistic and OH is being a dick which is not helping.
Sorry for the essay, I just needed to let it out somewhere safe.
Hope you are all having a better day than me.

Can you just go to the hospital, go to the ward and ask for someone to sort out what's going on?

Tilllly · 08/10/2023 17:25

I have a PET scan on Tuesday and I know I have to fast for six hours and drink lots of water
Is there anything anyone can tell me about it, so I know what to expect?

Florabritannica · 08/10/2023 18:03

Evening everyone! I had a great breakfast with @TopOfTheCliff - we’ll remember to take a photo next time.
Welcome @Englishrosegarden and sorry you’re having such an unsatisfactory time.
I’m starting Paclitaxel on Tuesday which Top assures me isn’t as bad as EC - any other experiences to share?

lucysmam · 08/10/2023 18:42

@Florabritannica I'm just about to jump in the shower & pamper myself for a bit but will be back shortly...I honestly didn't think paclitaxel was too bad!

Florabritannica · 08/10/2023 18:51

That’s encouraging @lucysmam - you get pampering!

thesandwich · 08/10/2023 19:09

Paclitaxel weekly wasn’t as bad as EC - more general meh and weediness for me…
hope uts th3 same for you @Florabritannica. So glad you and @TopOfTheCliff had fun!

tothelefttotheleft · 08/10/2023 19:33

I was diagnosed on Friday with breast cancer. Stage one but grade 3. I will be having a CAT scan because of other health issues to see if it's definitely primary or secondary. Obviously loving the limbo!

Can I ask some questions?

Do you have the genetic testing before the lumpectomy?

Can you avoid chemo and radiotherapy if you opt for a mastectomy?

SummerCycling · 08/10/2023 20:13

@tothelefttotheleft

Sorry to hear you were diagnosed with cancer, but welcome to the thread.

It's great (in the context cancer of course) that you're stage 1. Grade 3 is annoying. Mine is also grade 3 (and stage 3 though).

You asked about whether you can avoid chemo and radio if you opt for mastectomy. Obviously that's something for your MDT to answer, but certain things will depend on your subtype of breast cancer such as:

ER+
If you are hormone positive, specifically oestrogen (ER+), you have much more of a chance that you will get away with less harsh treatment. ER+ cancers are slower growing and have a better prognosis, but grade 3 is the fastest growing of the 3 grades (grade 1 is very slow in ER+).

HER2+ or TNBC
If you are not oestrogen positive, you will probably need chemo and radio anyway, even stage 1 grade 1. Then you'll be Her2+ or triple negative, which are the aggressive ones, and tend to also be higher grade, so 2 or very often 3.

You'll need to find out your subtype as above to know more; that will tell you a lot about your specific situation.

I know a few people with ER+ who did need a bit of chemo (far less than I did with Her2+ Er-neg). They were grade 3, stage 2.

Do you have a CNS or oncologist yet? I hope they'll let you know your treatment plan soon. Waiting is horrendous.

Tilllly · 08/10/2023 20:13

tothelefttotheleft · 08/10/2023 19:33

I was diagnosed on Friday with breast cancer. Stage one but grade 3. I will be having a CAT scan because of other health issues to see if it's definitely primary or secondary. Obviously loving the limbo!

Can I ask some questions?

Do you have the genetic testing before the lumpectomy?

Can you avoid chemo and radiotherapy if you opt for a mastectomy?

The genetic testing, if you are eligible, comes sometime after. You might avoid the chemotherapy, but you are very unlikely to avoid the radiotherapy, even if you are recommended to have a mastectomy.

SummerCycling · 08/10/2023 20:20

AFAIK all breast cancer patients get radiotherapy (?)

But ER+ patients generally get away with just 5 days and only to the chest wall. I had to have 15 days and to several more areas as a stage 3, grade 3, Her2+++ ER-0, PR-0 patient.

As a breast cancer patient, I found radio really easy and unstressful after chemo. You lie on a bed and you don't even feel the machine zapping you, although you can see it in your skin for a while. Plus it makes most people feel tired.

SummerCycling · 08/10/2023 20:21

@Tilllly

I'm glad you found this thread! Welcome over here too.

tothelefttotheleft · 08/10/2023 20:24

@SummerCycling it's not hormone positive.

I've not seen oncology yet.

I have another question!

My surgery date is provisionally 21/22nd November. So doesn't meet the nhs guidelines. But I was told I could have it done earlier with another surgeon. Any opinion on that?

Really appreciate your reply.

I'm sorry you are stage 3 and grade 3 I can imagine how it felt to learn that.

SummerCycling · 08/10/2023 20:25

@tothelefttotheleft

I had genetic testing soon after diagnosis and well before surgery. The surgeon based the decision to remove one breast (instead of both) on the result, which in my case was negative for the genes tested.

I don't know the criteria for offering the genetic testing. I don't know much about my family history, but also had a particularly fast growing cancer that was stage 3c in a very, very short time (between mammograms). Could be either of those reasons or maybe both, I don't know.

tothelefttotheleft · 08/10/2023 20:27

@Tilllly

Thankyou for explaining that.