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

[LemonDrizzle10]

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Hi all. Well I've finished 3 days of chemo dripping into a picc line with minimal side effects and feeling fine. One down 5 to go. (Or maybe 11 if the first 6 don't do the trick) I am warned that it's likely to get a little worse each cycle so not counting any chickens yet. No idea whether tonight's insomnia is chemo related, or just stress, or the irritation of the feel of the picc line bandage, or just perfectly normal perimenopausal insomnia entirely unrelated to cancer. Got 3 hrs sleep earlier in the night, have now been awake 3 hrs with not the remotest feeling of drowsiness. I did have half a glass of wine at supper celebrating being disconnected from the drip pump but I don't think that feels like a very likely cause.

@HohiyiKozbevi it was probably the steroids causing insomnia. They give you a mad rush of false energy which is disconcerting.
I could do with some of that. I’ve spent nearly 36 hours in bed resting with sore feet. It’s 9 days since I finished Cape but I’m still flattened. Today I shall rally and get up to take MIL for a Covid jab. Such excitement!
Love to all
Top,x

Hi @HohiyiKozbevi Yes, it does get more exhausting the further you go. I was chatting away when i started mine, by the last one, i was half asleep with a blanket over me. Just take it easy as you go. One day at a time.
I too am averaging 3 hours a sleep per night due to pain and waiting to find out what's going on next Tuesday

I've a bit of good news

GP has prescribed 2mg diazepam to get me thru the MRI on 13th
Now all I need is for it to say the cancer hasn't spread to my brain

I haven't posted for a while but keep an eye on this thread, wishing everyone the best.

Glad to hear the GP was helpful @Tilllly and hope it helps you through the scan. Keeping everything crossed for you that it hasn't spread.

@TopOfTheCliff congratulations on finishing the Cape! Hope your feet soon realise they're on the mend and needed for the Great Recovery.

@Bbq1 sending positive thoughts your way. I hate waiting. It's just the worst thing and nothing anyone says can help. I found immersion in my favourite book was the best thing but hope you can find some way of passing the time.

Just in case it offers anyone reassurance I've now been on tamoxifen for a few weeks and so far haven't noticed any awful side effects. I was really worried about taking it and put it off for ages. I've probably jinxed it now and will erupt into hot flushes warm enough to heat my entire neighbourhood.

@TopOfTheCliff congratulations on finishing your treatment.

@Tilly, glad your GP has been helpful in prescribing that. I'll be keeping my fingers crossed for you.

@KefaloniaKid its good to know that about Tamoxifen. I need to start taking anti oestrogens in a few weeks after my surgery. Hoping for the same.

Friday evening and the Patience Inn is open. I am swinging by for a virtual Gin and tonic before going to see a man about a boat. We are thinking of buying a small racing boat together to race on weekdays while we sail our big boats at weekends and holidays. It’s a statement of intent! I have a long way to go to get fit enough but what else is there?
Feet and fingers still peeling. Energy around 20 percent. Gah!

@TopOfTheCliff great to hear you are throwing yourself (in intent at least!) back into life and the things you enjoy. I love your approach.

On my front, this is a bloody rollercoaster. Turns out the thyroid nodule I thought was 'taller than wide' based on the report of the measurement is in fact wider than tall. So, only 'indeterminate' rather than highly suspicious. I'll take that. Referred to a thyroid specialist and biopsy anyway but am slightly calmer. I feel like every time I touch myself I find a new nodule somewhere. And, while I am distracted senseless with one nodule, another one appears somewhere else...So far have had three scares (hip and two arm nodules) which were not sinister and now a few indeterminate thyroid nodules to be investigated. We'll see. But first, a beer and a deep breath.

Sending positive thoughts to all who need it. As to 'jinxing it', I am amused to see I'm not the only one who feels like any moment of optimist is just asking for trouble..

That sounds a lot more hopeful Isa I seemed to have nodules everywhere, I had one on thyroid but they didn't seem to care. One on the lungs, some things in the kidney, a growth in the adrenals, boney island hip, it was like they were reading out a dead man walking and they read it out in a really grim way too. Thankfully they all turned out to be OK.

Great news about boat Top

Just been swimming, cleaner tomorrow and then a classical concert with afternoon tea though they have just announced photos will be taken, sigh.

@isaxx you have nailed it. Experience tells me that the worst just keeps happening so don’t let’s get too cheerful. Having said that my bone scan was clear and my MRI head was clear too. Must be lulling me into a false sense of security before something shitty happens. Let’s keep plodding along like Eeyore towards the light.
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Does anyone get rib pain? Both sides feel really bruised but it goes with pain relief. Ive had it for along time now. I had fibromyalgia and Im wonderinggif its part of that again.

work rang me today and said i an now officially on the long term sickness pathway. Nothing I can do about that. I do hope to go back though.

@EachandEveryone. I've had fibro for years and suffer with the pain you describe, it feels Very bruised and sore ribs.
Is that a formality putting you on the lts pathway?

What does that entail?
Are work decent with you?

Theres a policy i need to read Im with the NHS. The 1st stage is regular talks with my manager and if I am still off after a month I can take a union rep with me to a meeting. This is when they decide if I can still do my job. I have already told her that I dont think I’ll be standing on my feet for twelve hours for a very long time. Im hoping I can change my role somehow, my plan that they dont know is eventually to take my pension but carry on with my job. They will have to authorise that though. I cant pay into my pension anymore its closed now and is a waste where it is with them.

Each Aches and pains in bones are quite common though its best to mention to team incase they want to do bone scan and there may be things which can help, mine have been nothing apart from slightly weak bones osteopenia or something like that.

I hope you can get back to work if that's what you want. If its just for money could you look at taking your pension early, can take from 55. I am not working at the moment but looking at how the pensions work taking at 55, its possible to take and carry on working too though need tax advice.

Hope everyone has as good a weekend as they can.

That sounds awfully harsh. Hassling you after just a month off when I aee ill is wrong. I work in a school and I am very fortunate as we get 6 months full pay followed by 6 months half. You can then go onto unpaid sick leave but I think that's on an individual basis and they start asking you about your plans by then.
Could u take your pension and drop your hours?

Can I join in? Been lurking a while but don’t normally post, but could do with a little virtual support. I was diagnosed with grade 3 BC in 2001. Had mastectomy, 6 months chemo, further axillary clearance surgery due to positive lymph nodes and radiotherapy. Currently on zoladex, letrozole, venlofaxine and biophosphonates, been NED for the last year and managed to get fit and healthy again overall.

In the course of all that I was also diagnosed with a genetic mutation (I’m early 40s, as was my mother when she was diagnosed). So next week I’m having a risk reducing mastectomy on the other side and a bilateral Diep reconstruction. I’m absolutely terrified, far more than I was at any of the other treatment. Maybe because I’ve had so much more time to think about this one, whereas the original treatment all felt like being on a treadmill from one step to the next. And this is a bigger operation, 8 hours in surgery and 4-5 days in hospital, whereas I was out the next day with my mastectomy. Anyone else been through anything similar and can let me know what to expect?

I've been staying away from this thread as I have been burying my head in the sand really!

I had a biopsy 3-4 weeks ago of a lump on my breast, but the result was not enough tissue so I was called back for an aspiration of the lump. This was 2 weeks ago. A bizzare hybrid on the World's Smallest Hoover and the World's Biggest Needle sucked the entire lump (about a cubic inch) into a wee pot and off it went to the lab.

The lovely doctor who performed the procedure said they'd be in touch, probably a phone consult.

After a week the breast surgeon's secretary called and said they want a face to face appointment. That's this Thursday coming. I'm starting to panic! Why do they need to see me in person - surely if there was no reason they'd just call me or send an appointment out in the post?

So I'm back to not sleeping and getting agitated. Dh is a doctor and he's not sure what might be happening. He's coming to the appointment with me which is good, he asks the questions I'm simply too worried to ask.

Hello,

I'm also in my 40s, currently one cycle down with a further seven cycles of AC-T chemo to go. Like you, my breast cancer is grade 3, although thankfully, no lymph node spread. Had a mastectomy with no reconstruction, and once chemo is finished, will have 15 sessions of radiotherapy.

Although I have turned down genetic testing quite a few times over the past decade, curiosity finally got the better of me, in part due to family medical history, being of Ashkenazi descent and having a sky high risk Oncotype DX score for recurrence. As such, it has been revealed that that I have a v. rare double genetic mutation and despite one of my MDT pushing me to have a second mastectomy (along with removal of ovaries and fallopian tubes), I have declined all. This is because I feel that these surgeries although risk-reducing are only that, just risk reducing. It won't prevent me getting cancer in that breast, or developing ovarian cancer either. At the same time, I might not even develop either of these cancers anyway, so it would be a whole lot of surgery for nothing.

However, the good thing about having a genetic mutation is that I now get a yearly MRI and am on a special trial screening programme for pancreatic cancer - this cancer worries me far more than breast cancer which for the most part is hugely treatable.

Personally, if you're worrying about it all, why don't you just hold off for now. With a genetic mutation, you will be eligible for an annual MRI, not to mention surgery (and reconstruction) at any point in the future. There's no point putting yourself through all this now if you're not in the right frame of mind for it. Please talk to your MDT and the genetics team.

Welcome @AirborneElephant, if course you can join! There's lots of more "experienced" BC ladies on here who can probably offer you better advice but I think you've hit the nail on the head about having time to think and worry. As you say, when you are first diagnosed it's almost like being on a conveyor belt of appointments, scans, tests and treatments which you just get on with and don't think about too much. And also you feel like you are kind of moving forward.

In this situation it's probably dumped you right back into some negative by feelings that I suspect we all carry with us us after treatment. Plus it is a big old operation and it's rational to be a bit worried.

I didn't have this surgery but have a friend who did. She was a couple of years older than you, was really happy with the result of the reconstruction and recovered really well and more quickly than she'd expected.

@weegiemum Don't panic, whatever it isn't is likely not an emergency. There are all sorts of reasons they want to see you face to face. I have been dealing with breast lumps for 30 years, since I was 15. Whenever I have had to have a biopsy, (of which I have had dozens), they have always called me in face-to-face for the result. (This is both private and NHS)

For the most part, all was fine and the biopsied lump was benign. However, most recently, I have been called back twice. Once because the biopsy result was indeterminate and they wanted to do a lumpectomy. It was benign.

Regrettably, the second time I was called back after a biopsy was because they had found a focus of cancer. But, it was hugely treatable and caught early, before it had spread. Yes, I am having to go through a lot of treatment, but the cancer was cut out, and am technically cancer-free, and the additional treatment is to (hopefully) prevent a recurrence.

Whatever the outcome is for you, you will be ok. You have done the hard part and had the tests done. If it was truly urgent or life-threatening, they would have recalled you immediately.

Apologies if this isn't as reassuring as you would like but please watch this video which really does put breast cancer into perspective and for most, it's an emotional, not a medical emergency.

Hi @weegiemum sorry this is happening. I wish hospitals would understand the turmoil that this kind of communication causes. As doublec says, there can be many reasons for them wanting to see you face to face but if it is anything sinister, BC is such a treatable cancer and you will be well looked after.

Hey everyone, also been sticking my head in the sand recently but can't for much longer. Caught up on this thread, sorry to the new joiners and grateful for the words of wisdom and encouragement as always.

Background: haven't been able to wee for about 12 hours, once a month (ovulation day) for over a year now. Ultrasound found a tumour coming from an ovary in June. MRI found it to be 16cm in diameter in July and mixed solid/liquid make up. Blood test results have all been borderline for cancer.

The thing is finally being removed by a vertical abdomen incision tomorrow, along with one ovary but hopefully not two (really would rather not go through the menopause at 31). Been keeping it together for the most part, used lots of tips from here for my suitcase. Now I'm just terrified and trying to hold it together in front of my young DC and DH. Haven't had an op as an adult and really quite emotional and having to do it all on my own (but am a strong, independent woman the rest of the time, honest!)

Ah @weegiemum you have had such a lot of torturous waiting. I am not surprised you wanted to bury your head in the sand for a while. This thread can provoke a lot of unwanted feelings Soon you will know what is happening for better or worst. That will be easier to bear than the uncertainty.

@AirborneElephant welcome. Bouts of terror are par for the course here. Is it fear of the surgery itself that is crippling you, or the cancer risks? Could you ring Macmillan to discuss it all? I find when I am scared I have to sit with it and wait till it subsides. You can’t keep up an adrenaline rush for long I find.
Sending strength
Top X

@doublec

Ive been away and thinking about your post. I've had to advocate for my children because they have Sen. I'm not used to doing it for me.

I've copied this from the last thread-

"If I were you and I wanted a mastectomy, I would keep insisting on this. They cannot operate without your consent, and as it is a grade 3 cancer, they have to do so sooner. Also, what if pathology reports the margins are not clear? They will need to do a second operation a few weeks later. If these margins aren't clear, they will need to do a third. If this is still the case, a mastectomy is them the only option. Obviously, this is worse case scenario, but part of my reasoning for opting for a mastectomy was that it was the least amount of surgery because it removed any option of further surgeries should my margins not be clear. "

Can I ask for a double mastectomy? Will having a double mastectomy really reduce my chances of reoccurrence? Who should I talk to about this?