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Cancer support thread # 75 - come on in!

992 replies

Bloodybridget · 17/06/2020 16:59

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

OP posts:
Thread gallery
8
BitOfFun · 09/08/2020 20:58

You will be okay, honestly, for AGES.

ElaineMarieBenes · 10/08/2020 05:05

@BitOfFun I’m so glad to hear you feel pretty well and also thank you for the humour too.

@Bloodybridget I’m now into my 3rd year of living in a very hot climate but I’m sorry to say I think it is likely worse for you in the U.K. as it’s not the norm (air con is the only we can survive in summer!)

@gillmoregirl I’m going to keep reminding myself of your quote!

@balkanscot I’ve got 16 rounds of chemo coming up already - though only the first 4 of AC are bad apparently! Hopefully no more get added!

I was told I had a ‘really good heart’ during the preliminary tests though (as i predicted) DH’s response was that she really doesn’t know me!

Good vibes to everyone 😎

ElaineMarieBenes · 10/08/2020 05:06

Sorry for the missing *way !

citybumpkin · 10/08/2020 08:43

Hello All from a hot and sticky NL!  and welcome to the newcomers. As usual, sorry you're here.

@ElaineMarieBenes AC wasn't as bad as I expected it to be. I'm now on no. 6 of paclitaxel. Its the cummulative effect that is getting to me. Drink lots of fluids and rest as much as possible! Are you triple negative?

ElaineMarieBenes · 10/08/2020 11:45

Hi @citybumpkin and good to know you found AC not too bad! Do you mind if ask if you lost your hair? I’ve been told that I most likely will and I can try the cold cap but they rarely work!

I’m triple positive (so will have Herceptin and pertuzabad? as well alongside the Taxol - which I think is basically the same as your P?followed by radiation and 5 years of some hormone tablets (not tamoxifen!) but can’t read oncologists writing!

Just been notified my port day surgery is this Wednesday! I have been doing as much exercise as possible to get match fit - mostly brisk walking at 5am but some swimming and got a new bike yesterday (only managed about 5k this morning and my legs were quite wobbly when I got back home! Not entering any triathlons anytime soon!)

iVampire · 10/08/2020 13:00

I’ve had a chat with the BCN, who was lovely and who told me that the reason for concern is microcalcifications in one breast. Brace myself for biopsy, as they’re likely to snaffle some for testing, but good chance it’s age related (oh if only they were more widely distributed or bigger!)

So result unlikely before next week, but they had a free slot tomorrow which I have taken to get the ball rolling.

citybumpkin · 10/08/2020 13:09

@ElaineMarieBenes I did cold capping for the 4 ACs. I started to lose hair after the second AC (around day 17). I gave up using the cap after the first pac (yes, taxol is the same) as it was just too cold on my crown and gave me a massive sinus headache. I'm continuing to lose hair and would say have about 20% left. Weirdly new hair is also growing through already but its white and fluffy! I would try the cold cap and see how it goes!

ElaineMarieBenes · 10/08/2020 14:38

@citybumpkin thank you for the update. My Aunt lost all her hair during chemo - but it came through thicker and without any grey (she is late 60s now!) with lovely thick dark brown hair. I’ve been colouring my hair since I was 12 so will be interesting to see what it might be (as highlights now a thing of the past!)

KentishMama · 10/08/2020 23:58

Hello, is there space for another one here?

I'm 39. Newly diagnosed last Friday with grade 2 invasive ductal carcinoma, ER+ PR+ HER2-. Not quite sure why grade 2 as the tumor is only 3mm and we don't know about lymph nodes yet... And I am still waiting for results from MRI (done on Fri) and lymph node biopsy (done this morning). So I guess everything is kind of provisional for now?!

Anyway - surgery is scheduled for next Monday. Lumpectomy. My question: Has anytime else had a tumor directly under the nipple and lost it? My consultant says she can try to save it, but the margins are likely too little and she may then have to re-operate if tests show she didn't get all of it. So I have to decide if I want her to try to save the nipple or just go for it and remove it. I have no idea how to decide that... Any experiences?

LucyWarlowsRightHand · 11/08/2020 08:32

I've been MIA for a bit due to losing the thread but I hadn't forgotten it!

@KentishMama I'm sorry you're here but I welcome you to the thread. I'm very new here too.

I got my treatment plan yesterday and frankly, it's as good as it could possibly be given that I have bowel cancer. I didn't take a lot of the technical details in (eg the precise staging), I figured I could always ask about them later. But basically: I'll be operated on fairly soon (probably within two weeks). I have bog standard bowel cancer with no mets, which is fantastic news really. At this stage they don't think chemo will be needed but this will be determined after lymph node biopsy. If I do need chemotherapy that will be for three months.

The surgery is not going to be fun and there is an 8 to 9% chance of complications but I've just got to get on with it really. I'm trying to take it as it comes. All going well I will end up cancer-free after 5 years.

@Lubballoo a week ago I spent a rather tense five days or so waiting to hear the results of my scan and whether there was metastasis. Fortunately in my case there was not. I think I coped reasonably well (under the circumstances that is) but this is what helped me --> YMMV and feel free to ignore!

  • I definitely cried a few times.

  • I tried to keep in mind the saying that "worry is not preparation"

*I worked - I had a few small jobs to do and it gave me something to focus on for a while.

*I worried (despite the above) and accepted that it was ok to worry. I had said to my friend, "I'm really stressed," and she just said to me, "That's ok. That's normal."

*I talked to a lot of people. The day after diagnosis but before having the scan, I woke up and thought HELP! I texted my friend and we arranged for me to bring my kids over. The kids played together (kids aren't required to socially distance here) while my friend and her husband took turns chatting with me about the diagnosis, about the weather, about whatever. It was great to have some company.

ExH and I also talked at length about the pros and cons, repeating over and over that we just had to take it one day at a time!

*My GP rang me and we talked for a bit about things. It was really good to talk to someone who wasn't emotionally involved - obviously she cares, but I didn't need to worry about her feelings, the focus was completely on me.

*I found an online forum for bowel cancer and saw how people were coping with the 'worst-case scenario' and still enjoying life.

I really just took it hour by hour (and even now I'm taking it day by day, not looking too far ahead into the future).

My colonoscopy was delayed due to lockdown and I was so worried about metastatis. Every little twinge, I thought jeez, could that be cancer? As it turned out, none of it was, so it's clear that sometimes a sore hip really is just from getting older and that persistent cough really can be late-diagnosed asthma! It didn't stop me worrying about lung cancer though, jeez!

I don't know how helpful this is, but I also have two children in primary school and I know the fear.

One other thing that helped me when I started to worry was repeating an affirmation. I have a Louise Hay book of affirmations and every time I caught myself getting into a scary thought spiral I said to myself, "I love and accept myself" and a few other things. It helped me to refocus my thoughts. I'm happy to look it up for you if you like, or you could just as easily make something up for yourself or say your children's names or "I have to pay the phone bill" or whatever works for you!

I was a bit cross with the tumour too and told it that it had to go away, it's got no right to be there, it's not wanted there. I suppose it gives me a focus for the feelings!

I've just outed myself as completely batshit but that's how I managed. Thinking of you Flowers.

KentishMama · 11/08/2020 08:49

@LucyWarlowsRightHand Sounds like you are coping fantastically well - and giving the tumour a good talking-to cracked me up, but I feel the same. I'd quite like to shout at it, or (if that level of violence is acceptable on mumsnet), give it a good punch on the nose.

LucyWarlowsRightHand · 11/08/2020 08:57

@KentishMama apparently I'm very calm, but I keep telling everyone that I make no promises that it's always going to be like this. I reserve the right to break down completely in the future! Hopefully it won't happen but if it does, it's ok.

KentishMama · 11/08/2020 09:30

I've been going back and forth between being calm and positive, and being an absolute mess. I'm pulling myself together at home, in front of my five-year old, but was an absolute sobbing mess in the car on my way to a lymph node biopsy yesterday. So, it comes and goes. I've realised that the one thing that sets up off immediately is if anyone asks anything about my son. The thought of not being here to see him grow up is just agony. And it's probably ridiculous as I'm told that an early stage breast cancer isn't going to kill me anytime soon...

Thymeout · 11/08/2020 10:54

6 yrs ago, I was misdiagnosed by my local hospital. No gyneonc, which didn't stop the MDT deciding the scans showed that my v large tumour was ovarian cancer. A nurse rang me and told me I was being transferred to a teaching hospital. When I asked if that meant surgery, thinking of my dd's holiday plans, she said, 'No. I'm afraid it will be chemo.' I was up a ladder, pruning the hedge at the time.

So I spent 2 weeks thinking I was terminal. The first thing my lovely surgeon said was, 'Well, I think it's benign and will be operating in 10 days' time.' From the same scans. I nearly fell off my chair.

What got me through that time was 1) a low-dose antidepressant, with valium till it kicked in, so I could eat something and 2) I had the reverse of a bucket list. Reasons to be Cheerful I have ov ca. Starting with 'at least it's me, not my daughter' and proceeding through all the things I wouldn't have to do, like painting my bedroom ceiling, feeding dd's cats while they were away and never having to cook a turkey ever again. My affirmation was 'It ain't over till the Fat Lady sings'.

All of which explains my relentless Pollyanna-ism. Even now when it's the real thing. But my dc are all grown up now and, as I keep saying, it's v different for people with dcs or teenagers.

It v much depends on personality, too. Some people do the 'cross that bridge when I come to it', even if it's really a form of denial. And some people feel better when they let go and have a good howl at the unfairness of it all. It really doesn't help when someone with the best of intentions says 'well, at least...'

Gilmoregirl that's rotten news. Is your Macmillan nurse/CNS able to help? There used to be a cancellation list but covid may have affected that. Starmer glad the Ambrosias help. Watch out for weird cravings. Smoked salmon and rhubarb - strong tastes - in my case. Anything with vinegar. Lucy That sounds v positive. They won't know the exact stage till after surgery. I'm interested in 3 months' chemo. Did they say it would be tablets? Mine was meant to be 6 months but the last time I saw my onc, when we decided to stop because of covid, he said that new research seemed to show that maximum benefit was achieved in 3 months. So I'm wondering if the protocol is beginning to shift. Liz How are you doing? Did you get to the bottom of why your GP put Stage 4 on your form? BloodyBridget Hoping the news isn't as bad as you fear.

Best wishes to everyone else.

Bloodybridget · 11/08/2020 11:23

Hello all, just popping in to catch up. The thread has got very busy again - sorry to see more new people here, but welcome all the same to @Lubballoo and @KentishMama, it's horrible for anyone to get a cancer diagnosis, but especially when you have young children or anyone in your life who is very dependent on you. Sending you both my very best wishes for successful treatment.
@citybumpkin nice to see you again, you sound like you are getting through treatment pretty well atm so I hope that continues. Of course chemo effects are cumulative, which is grim, but on the plus side you're counting down.

@TreeWitch v sorry you have to face another biopsy. Hope tips from other posters will be helpful.

@Piggles39 hope you are starting to recover from surgery and not needing too many laxatives!
@TopOfTheCliff crossing fingers the oncologist was right about scan, wouldn't that be great?
@ElaineMarieBenes hope all goes well tomorrow with the port procedure.
@LucyWarlowsRightHand glad to hear you have no metastases, and daunting though it is to face major surgery, it will be good to have it behind you. Your coping plan is brilliant!
@Thymeout thanks so much for your kind words, just now and many times in the past. I am pretty scared, thinking, what if it's really bad news, like v short life expectancy, that would be awful. I am getting some physical symptoms now which would have worried me even if they hadn't called me in. My coping strategy is doing several of the cleaning jobs that are normally avoided altogether, or performed very infrequently! Freezer, dishwasher and wm tackled yesterday, fridge this morning! But what with heat and everything else, sleeping at night isn't happening much. I've made a list of questions for tomorrow, and am hoping they will let DP come in with me; obviously visitors are banned in most circumstances.

Apologies for mammoth post, sending warm thoughts to you all.

OP posts:
TopOfTheCliff · 11/08/2020 11:27

LucyWarlowsRightHand you made me LOL there with the phone bill Grin but you are right. I muttered Knowledge is Power all through my CT scan. And it was all clear. Phew.
I am now setting myself the goal of a complete pathological response CPR to chemo as I am so competitive. Apparently 40 percent get this. It doesn’t hurt to aim high .
I am about to set off to round 2 chemo and I am going to cycle in just because I can! DH can pick the remains up later in the van.
Good luck to those having treatment or scans or results this Week. We can get through this!

citybumpkin · 11/08/2020 12:25

@Bloodybridget I was counting down but had a blip with significantly low blood counts so I've had two chemos postponed. I've got 7 more to go then a break then rads. Hormones are everywhere and hot flushes in this heat...well...arghhhhh! Oh and a very active/chatty DD! Smile

iVampire · 11/08/2020 15:19

I’m back from the one stop tit shop

Enhanced mammogram, ultrasound and then stereotactic biopsy (and wire left)

They grade calcifications from 1-5 and I’m a 3, which is genuinely indeterminate. I have other calcifications (macro and micro) which they’re not remotely bothered by. But there was a group of about 6 of them having a party and they’re the ones they sampled (they were in a round group 2.2mm across, which is possibly a bit less worrying than if they were line dancing, but not a strong enough indicator really)

I took two goes of 5 or so clicks to get the sample, so my boob is feeling a bit battered! The doctor OK’ed me taking the prescription strength cocodamol I had left over from the broken foot, so I’m now feeling slightly woozy watching classic Corrie. Results middle of next week

No sign of anything invasive, so worst case I’m facing is DCIS/grade 0/pre-cancer.

I didn’t sleep terribly well last night - the heat as much as anything else!

How’s everyone else getting on?

balkanscot · 11/08/2020 15:59

@ElaineMarieBenes Yep, my heart was also deemed perfect! That’s why they are going with the aggressive chemo but at the moment I am still feeling wiped out - as of though someone has turned off my oxygen. Good luck with the port tomorrow!

@citybumpkin My DS8 is also all over me at the moment, also quite rude at times, which I think it’s his response to “mummy is tired” line I have been uttering since last Thursday. Back to school tomorrow (Scotland). Good luck with the rest of your treatment, sounds gruelling but fingers crossed will be worth it in the end.

@

My oncologist has advised me against cold cap as it takes considerably longer to be on the ward and she wouldn’t recommend it at the moment (Covid), also with limited success. I had already made up my mind before her talk that I wouldn’t have it, though. I’ll just ride it out, although I am still woefully underprepared for hair loss - still need to pick up my BCN nurse’s letter re: NHS prescription wig, and haven’t got myself organised in terms of buying scarves/hats.

@LucyWarlowsRightHand no need to apologise, it’s a good strategy. As far as stupid cancer is concerned, any form of visualisation/dealing with the bastard no matter how batshit it sounds is ultimately most welcome!

@KentishMama I hope your lumpectomy goes well on Monday. I had a lumpectomy originally but it was not anywhere near the nipple, so managed to hold on to it until double mastectomy.

@Bloodybridget sending you all the good vibes for tomorrow. And I hope your DP manages to come with you- it has been really grim being in my own on my now second cancer journey, in all the waiting rooms. I also go into cleaning sprees to stop myself ruminating. Right now, though, I managed to clean & vacuum bedroom floor and feel like I have been climbing up the Mount Everest! Hmm

@TopOfTheCliff hats off to cycling to chemo. I did a feeble 5K cycle yesterday afternoon and just about died. I had to push the bike on the slightest of hills. Blush Very infuriating.

@iVampire it all sounds promising! Let us know when you get the results back in. It’s very muggy here, I can just about close my eyes but am unable to get into a deep, refreshing sleep.

Already dreading the second cycle on 20th August, shit!

gillmoregirl · 11/08/2020 16:33

@LucyWarlowsRightHand Your post resonated so much with me due to similarities in situation. So good that cancer has been contained. If you don't mind me asking where is your tumour? Hopefully you have surgery soon with no complications.

@Thymeout. I was disappointed with the call as much as I'm dreading surgery just want to get things moving on. Don't want this bugger to get too comfortable or take up more space. Hard to get to talk to any medical staff as everyone so busy. Tried to call gp to ask for something to help me get to sleep and stay asleep and apparently you have to call within certain hrs to request a telephone call back. It's unreal at the minute.

@Bloodybridget Sending much love to you for tomorrow. I hope that your fears are unfounded and news is more positive than you are imagining. Virtual hug to you.

Just home from work. So warm here. Best wishes to all you warriors. Can

LucyWarlowsRightHand · 11/08/2020 17:12

@Thymeout I don’t believe the doctor told me what type of chemo it would be, or it could be that I totally wasn’t listening!

@gillmoregirl the tumour is in the sigmoid colon and if I’ve got it right it’s from 12 to 19cm. I’ve not worried too much about the precise details as it was all perfectly clear at the time! Because of the location they have to take out a good portion of healthy colon because it will be left without blood supply. And of course there’s no telling what will happen once they’re operating. Out of my control, I trust them to do their best and it’s out of my hands 🤷‍♀️

I’ve got photos of it from the colonoscopy so I have a target for my rage! Wink

(Don’t worry, I can call to be reminded of the precise details any time. I’m more focused on being clear on what’s going on rather
than necessarily being able to repeat it!)

LucyWarlowsRightHand · 11/08/2020 17:20

Oh I also have a date for the surgery: 20 August.

The following is not really relevant so feel free to skip:

ExH who has been brilliant through all this is suddenly wondering whether the children could stay with a friend so he doesn’t have to worry about his cat allergy at my
place? I know allergies are no joke but this is typical ex, somehow thinking that the children will be fine staying with friends and not that they might want to be with their daddy?

Anyway that’s a separate issue and probably something that both he and I are both focusing on to avoid our worries about the situation. It’s all very real now we have a date for the surgery. I have to remind myself that I know he cares and I know he’ll do whatever he can to support me and our children, it’s just that he often needs to have the details spelled out to him!

Squiffy01 · 11/08/2020 18:12

@LucyWarlowsRightHand I was randomly reading and thought I would say hi. I don’t come on much cause I am quite useless at keeping on top of this thread. I was diagnosed with stage 3 bowel cancer end of November last year and started chemo in December and had my right hemi at the end of April so if you have any questions or just want to chat to someone I am here.
Do you know what type of operation you are having?

InOtterNews · 11/08/2020 18:17

Balls! (And other swear words). After spending the weekend being an emotional wreck and getting my head round going for transplant in 10 days time, the hospital have just rang and they've decided they want more stem cells. So now I have to go again for another harvest in a couple of weeks time. Transplant will now be mid-September.

I'm still going in tomorrow for my pre-transplant tests.

I'm now worried that I'll need another chemo to keep me ticking over for another month. Or they might even say I can leave the house for walk. (Not getting my hopes up). Will I get a break...stay tuned 🤞

LucyWarlowsRightHand · 11/08/2020 18:20

Oh thanks @Squiffy01, that’s really kind of you.

In principle it will be keyhole surgery, possibly robotic surgery. Was that what you meant? That’s all I know really Grin I’m told that ideally there will be 4 incisions but of course it depends how things go.

I was first referred for a colonoscopy back in November but due to a (different) hospital’s lack of organisation and then coronavirus shutting everything down, I only had it 13 days ago. I’m incredibly lucky that it’s not more serious than it already is.