Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

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@AirborneElephant I had a unilateral mastectomy, lymph node biopsy and and diep all in one over 5 months ago. 8 hour surgery and 4 days in hospital. I am happy with the reconstruction. Recovery can take a while - tight abdomen mainly (had to walk hunched over to varying degrees for two weeks). But, overall, it was fine. Had much more trouble from the lymphnode biopsy than from the diep. I too was very nervous. But, luckily I just had to show up! They did the rest. You'll be ok. Of course, as @doublec said, you can also think about it it a bit longer if you are unsure.

Because of the advances in oncoplastic surgery, most breast surgeons will push to save the breast where possible.

Personally, I wouldn't even 'ask', I would use the word 'want' instead. By using the word ask. it's almost like you are asking them for permission to do as you wish. However, removing your breast(s) is permanent, and a big operation, more so if you opt for a reconstruction. I think they are concerned you are having an ill-thought out knee jerk reaction by removing them now when they don't consider you a real risk of anything. I think so long as you are clear you have thought about this carefully and know is the best option for you in the long term, they cannot say no. And if they do, you will need to ask to be referred to someone who will listen to you and do as you ask.

The long and short of this is think carefully about the words you use as you need to make it clear that you're not asking them, you are telling them and nothing they can say to you will dissuade you.

All that said, remember, even if you remove both breasts, or just one, it is only risk-reducing surgery. You can still get a recurrence or even a new primary in what little tissue is left/your chest wall. (It is impossible to remove every teeny tiny cancerous cell, and why radiotherapy is usually needed, and for some, chemotherapy. Think of it like peeling an orange. Even the most skilled person can't remove every minuscule fibre of pith). Maybe this is the question you need to ask yourself? Is having all this surgery really worth it knowing you could still get breast cancer anyway?

Additionally, you might not go on to develop a recurrence or even a new primary anyway, so do you really want to remove a perfectly healthy breast, and a breast that is easily treatable with just a lumpectomy. Again, this is worth a lot of thought.

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I knew without a doubt when I was told I had BC that I wanted a mastectomy. They tried to steer me to a lumpectomy/breast conserving surgery. Even though they found a second focus of cancer in my breast and a mastectomy was recommended, I was still technically eligible for a breast conserving surgery.

For me, it is that final question that prevents me from having the other breast removed ( for now), and this is with the knowledge that I have a stupidly high risk of recurrence due to a rare genetic mutation. But, due to this mutation, I am eligible for annual MRIs, so if anything sinister comes up, then I will absolutely remove the other breast. But, I don't see any value in doing this if there isn't a real reason for doing so even though some of my MDT and the genetics at GOS have been pushing me to remove my other breast, ovaries and fallopian tubes too. I don't want to remove any more part of my body unless I have good reason to.

Good luck with everything, you will come to the right decision for you and I have no doubt you will get exactly the surgical solution you desire 😀

Crimson, you don’t have to be strong. You can be as scared and upset as you like. All of that emotion is better out than in.

I’m sorry you’ve found yourself in this situation and what I will say is that these giant cysts, if malignant, are generally found at a very early stage and your treatment may just be your surgery.

My cyst was huge and I had what’s called a staging laparotomy which meant I was filleted like a fish from just under my sternum down to almost my pubic area. All of my reproductive organs were removed along with 6kg cyst, my appendix and omentum. It was a huge surgery and I got over it really quickly physically but the mental/emotional impact was something else entirely and 3 years later I still have a panic attack at the sight of an ultrasound machine.

I am getting better though and just a few days ago I was able to have a uro-gynae appt for my rectocele and cystocele and when the Dr said, ‘have a look at the screen’ I was able to and that was huge progress. We’re all very different when it comes to fear and what makes us scared and that’s ok.

Surgery doesn’t actually bother me which is why I have no qualms about the surgery I’ll have in a couple of months for my uro gynae problems but I can’t even look at a computer monitor on a Drs desk because of everything that happened on the day 3 years ago when this all started. I’ll actually sit with my head turned away a bit in case I see something that scares me. 🙈 Oh and I’m awful when it comes to a drip also. I’m really quite good at making a fool of myself when it comes to it but I am working on it for my next surgeries.

Ive told you all of the above because it really is ok to be very very afraid and that we do each other a disservice when we minimize our fear when speaking to others and we don’t want to be seen as ‘not brave’ or someone who should be in a psychiatric ward. We can only be helped by those around us, and that includes the medics, when they can see just how scared we are.

Your surgery? Is there anything you’d like to know?

You’ll soon be home with your husband and son and it will all be ok. 💐

Thanks @doublec , @TwigTheWonderKid , @TopOfTheCliff . I think I’m just having a wobble, I’ll see if I can speak to my councillor next week to calm me down. it’s the surgery and recovery I’m scared about. I was in so much pain after my second surgery and it took me so long to feel really fully well after treatment, and I’m scared of going back there.

It doesn’t help that while the surgeons have been great, the hospital is being a bit disorganised. I still don’t have the date and time for my pre-op CT scan for example, which given I’m meant to be working next week and the hospital is two hours away is not great.

I’ve put this off for a year already, and have talked a lot to my team and Macmillan. I am looking forward to getting rid of the uncomfortable temporary implant. And my risk of a new primary in the other breast is 50%, so for me I do want to reduce that risk. I’m lucky that my mutation only has a marginal impact on ovarian and pancreatic cancer risk so BC is the one that runs heavily in my family. So I think I need to remind myself why I’m doing this, and that the recovery should be ok this time.

I've had 3 surgeries in the past year. The first one was my breast surgery and I was terrified as I'd managed to get to 53 without ever having an op. I was convinced I was going to die. By the time I got to surgery three this summer I was totally unfazed. It's actually such a calm process it's hard to get worked up on the day. All the staff are an amazing combination on incredibly professional but utterly kind too and I have to say I loved the feeling of drifting off and the dreamless "sleep" I had when under anaesthetic was very restful.

Just take plenty of stuff to keep you occupied in case you have much of a wait.

Thank you. I keep being told the lymph node clearance is the worst, it’s good to hear that from someone who has done both

Thank you for your words Twig and Birdie

I have told people that I'm nervous but I'm trying to focus on what I can control. Think DH is too - he cleaned the bathroom this afternoon and he doesn't really do that job.

My surgery anxiety is mostly around the unknown - how long it'll take, how I'll feel when I come round, when my DH will be able to return, when will I be able to get up and go for a wee, will I be sick after? (had GA x3 as a kid and was always really sick/nauseous). I know I just have to trust it will all become clear but I felt very ignored and forgotten when I had to stay overnight after having DD and I think my biggest fear is being left and unable to advocate for myself. My post birth hospital experience was pants and I don't wish to repeat it (had my second at home because of it).

@Crimsonbow You'll wake up in the recovery ward and you will stay there until they are happy you are ok, then you'll go up to your ward. You won't be abandoned, the staff will be round regularly to do your obs and help you. You will be well looked after. Just make sure that they put the call button within easy reach!

@Crimsonbow i think you’ll find nausea etc is managed better these days, as is pain relief. Tell them your worries and let them do their job - they’re highly trained professionals
Its not easy going through surgery, but you will be looked after. Use the pain relief, keep the call button handy.

@Crimsonbow welcome and I hope you get some comfort here. My SIL had an ovarian cyst the size of a rugby ball removed a couple of years ago. Thanks fully it was benign and she has recovered well. She played it down because I was going through the Cancer triathlon for no 1 cancer and she felt there was enough worrying going on in the family. It’s never fun but the staff do take good care of you, especially if you explain your past trauma.

@AirborneElephant i have had lumpectomies both sides now ( two different cancers). First time I had a total node clearance and second time I just had a sentinel node biopsy. The node clearance caused the most trouble due to a seroma and a fistula. I still get nerve pain both sides but it’s slowly settling 3 years on. The muscles are tight from radiotherapy and need regular stretching but are slowly mending. Overall I am glad I kept my breasts and as I don’t have a faulty gene they wouldn’t take them without a fight. There isn’t one answer we are all different. I hope you find the way.

Feeling smug tonight because after judging a cycling competition today I was inspired to do 30minutes on the turbo and enjoyed it. Go me!
Top x

@Crimsonbow your. Moment about your DH cleaning made me laugh. My DH was going on yesterday about how we really need to replace the sealant around the bath 😂!

On the nausea, please do tell the anaesthetist. I was really nauseous after my mastectomy, but for the node clearance they gave me some extra pre-meds and I was much better.

Really good luck today, I hope it goes smoothly and I’m sure you’ll make a great recovery 🤗

I hope today goes smoothly @Crimsonbow 💐

I have my cardiology appointment today. It occurred to me last night that the lady who booked it said it's a half hour slot. Goodness knows if they've any tests etc planned but I'm not expecting any - if they do then they can book properly & let me know what's happening.

Thinking of you this morning @Crimsonbow . Hope you aren't kept waiting too long.

@lucysmam hope your cardiology appointment is useful. Such a pain not knowing what is supposed to be happening.

I’m on my way to my PET scan 😩

Thinking of you @EachandEveryone and hoping for the best outcome for you

@Crimsonbow thinking about you. I have my surgery on Friday and I'm a bit scared to be honest, I've been in denial the last few days and I'm travelling North today to go to a funeral tomorrow. I think GA's are a lot better these days though, I had one as a kid which made me as sick as a dog and two other ones as an adult where I've felt fine afterwards. Its all so daunting though.

@lucysmam and @EachandEveryone hope your appointments/scan are ok.

Take care everyone. I'll check in again some time over the next few days.

@Octopus45 Its normal to feel scared. I found the GA fine to be honest and haven’t had surgery since I was 3! Hope it all goes well for you on Friday.

Afternoon all, just back from my pre chemo bloods and Oncologist appointment. I wasn't expecting it as thought I would need to see the head honcho Oncologist, but the clinic doctor gave me the results of the CT scan I had 10 days ago and said my tumours were showing an "excellent response" to the chemo.

Obviously I'm still stage 4 but it's the best news I could hope for right now. As I've been having relatively few side effects from the chemo I'd managed to convince myself it wasn't working.

Yay @TwigTheWonderKid 💪🏻

Yay @TwigTheWonderKid . Great news that you’re getting a good response from the chemo, long May it last

Fingers crossed the excellent response continues @TwigTheWonderKid !

I had an erm...interesting...afternoon!

Turned up for what I had been told was a f2f to follow up June's echocardiogram. Was very reluctantly prodded, poked, examined, hooked up to the ecg, and asked a million questions. Some sort of warning would have been amazing!.

Heart failure seems to be the diagnosis...except I do not have a single one of the symptoms the registrar asked about 🤷‍♀️ He seemed genuinely flummoxed tbh & has sent me on my merry way with several new meds to take, that I didn't want to come out with, whilst waiting for an MRI that I very much do not want, to confirm or get a better idea of what's going on, and a phone call from their specialist nurses (yay! Yet another reason to have my phone on ring & answer every random number that calls 🙄). If it's another call to have a merry chat about the weather like the BCN mostly is, they can fuck riiiiight off.

OH, AND the MRI machine at my local hospital is apparently different to the one they want me to go to. Is that even a thing? Is an mri machine not just an mri machine that does what the tech tells it? Does one do one job, and another do another? Could I end up in (maybe) Scotland 🤷‍♀️ if they want a head MRI!? Or London if my feet need checking out? Ffs 🙄

He was really struggling to get his head around "no, whoever has written that I have shortness of breath can't have been able to listen and write at the same time because I do not", "no, I don't sleep on more than one pillow", "this came about before the paclitaxel was introduced", "yes, I can walk up an incline with no problems", and on, and on, and "no I don't have palpitations - should I be doing?!".

I am soooooo eye rolley tonight!!

And to top it off - goes to pick up the meds from the chemist & gets "the pharmacist will ring you in two weeks to see how you're getting on with them". No.

No they will not. I am already expecting a call from either consultant, or reg, next week, after I have my bloods done at the chemo suite. I do NOT need yet another random call ffs. It's just something else to hang about waiting for! He wanted me to have a second set of bloods for them at the same time 🤔 Um no there too - if you can access them from the chemo suite then look at them from there.

I am pissed off beyond belief right now.

At EVERYTHING! & EVERYONE.

Including the dick on the bus who played their bloody tiktok loud enough for the whole bus to hear, for further than I was on it.

Did I happen to mention I'm PISSED OFF?

Thanks for reading my rant...normal calm will be resumed shortly!

They may want a stronger MRI with more teslas to get a better picture @lucysmam - I always get taken to a special research MRI, including one in a university once, for ones that I have of my brain to measure changes because they need more accuracy.

Thanks @SierraSapphire . I think I knew there was a reason for it, iyswim, it just pissed me off today. Along with everything else.

Never rains but it pours kind of day 🤷‍♀️

On the positive side @lucysmam you haven’t got any symptoms of heart failure despite their gloom which is a win!
I would be trying to establish which tablets are going to prevent future problems and which are for symptom relief and therefore not needed as you have no symptoms. For example ramipril and candesartan will act preventatively while diuretics like furosemide are for symptom relief of swollen legs or breathlessness.
Have they said what they think is wrong?

I had a lazy day with painful blisters. Have started high dose vitamin B in the hope it helps. I’ve got things to do here!

@lucysmam it's totally ok to rant. Often those "Tick Lists" of symptoms are based on how a condition presents in the male of the species. Women are "atypical presentation" because our bodies are different but the original research is done on men and that's how the text books get written. Glad they managed to find it anyway.

Meanwhile does anyone have any tips for how to deal with totally zero appetite? I can't be managing more than about 1000 cals a day. Doing my best but almost every mouthful I take is fighting against an instinct that I simply don't want to eat. I normally listen to what my body tells me and it's good at e.g. telling me I need iron and making me crave spinach but this is the opposite and everything is telling me I have had enough after 3 forkfuls. (Am on day 7 of chemo, for context). Have had the "little and often" advice but that's made it worse as it's multiplying the amount of energy needed to prepare food in the form of multiple small snacks, which is additionally making me feel too tired to eat.