Bad news today

[badnews943]

Had a nightmare today. Received news that I have type 3 breast cancer which may be in my lungs. I'm having a lung biopsy next week but the Dr seemed pretty certain.

I'm not sure what to think. Any advice or support?

Very good luck to you , l hope all goes well . Hope your p.i.p goes through ok as it will help support you . All the very best William

I think it’s sensible to try to switch to a speciality hospital if you can OP, if it won’t delay treatment. My treatment is at a renowned cancer centre in the NW and my treatment is excellent - more holistic. It’s good news that the cancer hasn’t spread further and hopefully the various treatments on offer these days can control it for a long time to come. I’m also really really pleased that the outlook isn’t as bleak as you first feared - just shows how easily words, or even how they are said, can give the wrong impression.

l mentioned my experience with letrozole in my last post OP. Have they told you much about it ? It’s an aromatase inhibitor - it blocks the enzyme aromatase, which prevents the body from producing oestrogen. It’s oestrogen that fuels the cancer so stopping the body’s own production of it starves the cancer. The drug is often used as a long term treatment and it can significantly shrink tumours and improve quality of life by preventing them from spreading. There can be some side effects when you first start taking it, but these are usually mild and don’t last. I was advised that the drug is a game changer for BC so it’s great that your tumour is responsive to hormone therapy - it’s much kinder than chemo, which was a bit brutal.

My mum was diagnosed with stage 4 BC four years ago. They can’t operate because she’s older and a higher surgery risk, but the cancer is hormone responsive and she was prescribed letrozole. At the last appointment they said the tests had shown a marked reduction in the size of the tumours. The same was true for me, except that l needed shrinkage before surgery and it was really successful. I do hope it works for you OP. You sound much more positive and it’s great that you’ve had a needs assessment. Don’t forget you can also apply for PIP, so as soon as you feel up to it, you can get the ball rolling with that. All in all, really encouraging updates.

@Rosscameasdoody I'm sorry about your mum.

Yes, moving to a specialist facility is the way to go I think. My current treatment is complex because they need to induce menopause and then I can start taking the medication. I won't be too far into my treatment if I can transfer and it won't be difficult to amend it if the other hospital want to make changes.

Thanks. The BC Dr's bedside manner was horrendous and the fact it hasn't spread further and there is treatment is positive. The info on the medication is useful, thanks for posting.

So glad you now have your diagnosis and treatment plan alongside help with income and home upkeep. To help keep your thoughts positive along the way dress your best, if you can go a bit over the top with your make up and style. I found that when I felt my worst to see myself with lots of colour helped my mood during the day as well as when going for Drs appointments.
Wishing you all the best: my cancer 2nd time was lobular, but curable. You could have a better outcome than expected: So enjoy your life as much as possible.❤

Thinking of you OP, it's good to know you are on a treatment plan you can take in the comfort of your own home and I hope you get your pip and the help to make everything easier for you.

Good luck x

Thanks all.

I had my implant today to induce the menopause. I also saw the consultant at the respiratory clinic and they don't know what's causing the breathlessness. They want me to do further tests. I asked for something to help and they didn't offer anything. It hinders my treatment as oncology want me to take a certain medication but one of the side effects is lung inflammation.🙄

I've ordered frozen meals to be delivered as I'm too fatigued to cook. The cleaner came yesterday and the place looks good so that's a huge help. I had a mani/pedi today which was lovely.

Brillant progress OP. How long do you have the implant for?

I'm not entirely sure. I don't know what to do regarding the breathlessness as I believe it's an infection but they aren't dealing with it. I think a bronchoscopy would be useful in order to see what's going on better and look for infection.

How frustrating @badnews943 . My situation is probably irrelevant so forgive me, but just in case... my large Fostair inhaler has been a bit of a gamechanger as mentioned upthread. It has a much larger tube than the traditional ones.

I am having a full lung test on 19th whatever that means as they have told me I have a condition called ground glass opacity .

Anyway it is great that there are others on this thread who can support from personal experience, especially of the treatment plan going forward.

A mani / pedi is a lovely treat, glad you enjoyed it OP x

I also wanted to let you know that there is a drink called Ensure which is like a milkshake but with protein and lots of vitamins - when a relative of mine was poorly and couldn't eat well he had a lot of these and it helped him feel more energised.

Of course check with your doctor first, but you can get it online on Amazon or superdrug and I think they have different flavours - I have put the link here for you : )

https://www.superdrug.com/health/diet-fitness/protein-supplements/protein-shakes-powders/ensure-ready-to-drink-vanilla-flavour-220ml-x12-bundle/p/z00730?gclsrc=aw.ds&gad_source=1&gad_campaignid=21040091881&gclid=CjwKCAjw49vEBhAVEiwADnMbbB71j93CnPiEsNQuIYJrI7h8IWnyPzZLv0h_WdhjqlkJdzqvxSSJsBoCIX8QAvD_BwE

You’ve answered a question I was going to ask. Letrozole is usually only prescribed for post menopausal patients, and I had the impression you were pre menopausal, so obviously that’s why the inducement. That’s rough, but stick with it OP because Letrozole is a really effective drug, so it’ll be worth it in the long run. The thing to remember is to be kind to yourself and don’t let anyone talk you into doing anything you don’t want to do. The treatment is going to tire you so you need to be in a position to rest whenever you want. And having read your previous update, I do think that when you move to the specialist facility, maybe push for a bronchoscopy to see what’s going on with the breathlessness. They should be dealing with it, as if it’s an infection you’re at increased risk of complications because your immune system is compromised.

And I’m another one in favour of Ensure drinks op. They contain everything you need to keep your calories and nutrients up if you don’t feel like eating. Mum has three a day and they keep her going. Ask your GP and make sure you get them delivered because they order a good supply at a time - you can also choose your flavours.

I'm sorry to hear of your diagnosis and I'm glad the inhaler is working. 💐

Thanks for the link. I wonder if I should keep some by the bed. Yes, the mani/pedi is lovely. Someone comes over to do it and she's lovely.

I'm not looking forward to the onset of menopause! I'm looking for a decent calcium supplement at the moment.

They usually include another drug with the Letrozole but one of the side effects is inflammation of the lungs so they're waiting for respiratory to come back to them.

I'm going to speak to the Dr on Monday about a bronchospocy because I'm so fed up with it. Thanks.

BC treatment can cause osteoporosis, and inducing menopause to facilitate hormone treatment won’t help. I was diagnosed with it a year or so before the BC diagnosis. I’m on Alendronic Acid which is taken as a pill once a week. It’s supplemented with Calcichew tablets - they look like extra strong mints and you suck them until they dissolve. Also on vitamin D supplements. At some point your BC team will talk to you about the risk to bone health but if they don’t it’s important to ask ASAP. You’d be better approaching the BC team about supplementary meds or vitamins - l found that my GP is very reluctant to prescribe without running it past oncology.

No worries, the oncology team prescribed calcium supplements and warned me about osteoporosis. They have side effects though so I'm looking for an alternative.

Thanks.

I don’t have a problem with the Alendronic acid as long as l take it standing up with a full glass of water. The calci chews cause indigestion and bloating though. I’ve even tried taking them with omeprazole and it still happens.

They prescribed the calcichew to me but I'm not getting on with them. Sorry to hear they're causing side effects.

I haven't been on any hormone blockers due to my cancer not being sensitive to hormones, but my oncology team do give me the caplet version of AdCal which you swallow rather than the chewy discs like the standard AdCal. Other patients get the chewy ones but they contain ingredients I am allergic to. Both types are called "AdCal"

AdCal seems to be the same medication just a different brand to the Calcichew you've been prescribed. I wonder if trying a different brand might be worth doing?

I've also been having 6-monthly infusions of Zometa aka zoledronic acid.

I've ordered some calcium citrate, hopefully that should resolve things. The GP finally put in the referral to the specialist hospital so I'm waiting to see if I get accepted.

I found out that some of my bloods were out of range and no one told me. I spoke to the nurse and she was pretty indifferent which wasn't reassuring. I've booked a session with a specialist nutritionist to discuss my diet, however the other hospital provides all that so I'll see how it goes.

A cleaner turned up today, no one told me she was coming. I was delighted though.

Good about the referral, fingers crossed. I also hope the calcium citrate goes well.

Do you know which bloods? Maybe if you feel like you want to, you could post the results with the normal ranges we can all take a look and and see what we know about them? I have had so many blood tests it'll be in the thousands by now.

Brilliant about the cleaner!

Thanks. I'm really hoping I get accepted at the other hospital.

I'm pre diabetic and have a fatty liver but no one told me, I saw my blood results on the NHS app and contacted the nurse who said it happens when you get older. I asked about a nutritionist but she said they're not available for this. Obviously I'm concerned about getting another serious illness, so I booked a nutritionist who specialises in BC. I don't have much faith in this hospital at all.

I was surprised the cleaner was organised so quickly and she seems great, so that's something positive at least.

I haven't been taken on by the other hospital but the GP asked for a second opinion. I didn't speak to a consultant but they said they would be treating the same which was reassuring. I'm going to speak to my GP when she gets back about another referral and trying other specialist hospitals.

@badnews943 I'm sorry but I don't have pre-diabetes or a fatty liver so I can't give you any tips about those things. I have quite a lot of things, but not those. x

My MacMillian CNS was beyond useless. I've heard this is often the case, so people who get a good CNS are very, very lucky.

My hospital had no support available at all, so after a few months of very lonely treatment (chemo etc) I looked elsewhere. You can visit eg Maggies etc at other hospitals which is what I did (once I had discovered them). You are so much more aware of everything early on than I was, you are doing so well at that. Go you xxx

I contacted Diabetes UK and they were really helpful. Sent me lots of information and answered all my questions. I'm changing my diet and seeing a nutritionist, so hopefully I'll get a handle on things.

I have some energy! No idea why, could be the implant although I've only had it for 10 days. Could be placebo, no idea but it feels amazing.

My hospital is terrible. I found out that the holistic therapy offered is actually 2 sessions at another hospital miles away with a big waiting list. The nurse was pretty unhelpful so that's not looking good. Sorry to hear yours was also unhelpful.