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?

Thanks. My sister has been taking my mind off things. Got a letter from the BC Dr and read some of it but it was too depressing, so I put it away. I just want to think about other things until Monday. I hope you're feeling less down.

Totally understandable OP. You’re waiting for all the results to come in and trying to hold yourself up until you get the full picture. That takes strength and sometimes all it takes is one unexpectedly kind gesture to bring it all tumbling down.

Was the letter a copy of the summary they send to your GP ? If so, you said your GP is supportive so could you maybe ask them to summarise what’s being said ? Would that take some of the fear out of it ? I was a little like this at the start OP but I tend to be the opposite now -I want all the information l can lay my hands on so that I have a clear picture of what’s going on and what the plan of attack is. But it took time for me to get to that point because it entails facing some scary stuff. As time goes on you’ll find what you need to face the full details, but for now you’re doing what’s right for you and taking it bit by bit. The only caveat is that things may not be quite as bad as you are anticipating, but only you can know that.

Hoping you get a reasonable rest tonight.

Just wanted you to know that you've spurred me on to tackle a few things I had been putting off, like tidying the kitchen.

Will be thinking about you tomorrow

Thinking of you today. 🌺

@badnews943 also thinking of you 💕

@badnews943 Thinking of you xxx

@Enigma53 I'm so sorry to hear you've got a new pain that isn't under control. I've heard that hospices are much better dealing with pain than hospitals are, is there any way you could access a hospice pain team? I know it feels depressing even using the word hospice, but having uncontrolled pain must be horrific, I am so sorry you're going through that.

I am also sorry to hear you're paralysed with fear and can't move from your bed. Cancer is just so evil. Do you have anyone who can bring you a cup of tea?

I will be thinking of you on 11th for your scan x

@MrsKyppthankyou for your kind words. Cancer is indeed evil. I’ve spoken to the pain team within the hospital and we will meet this week, to discuss pain management meds. It may be that my existing meds need to be tweaked. I have a meeting with the oncologist tomorrow and a blood test, ready for the next chemo on Wednesday xxx

All the best @Enigma53 🌺

Had very bad news, it's stage 4. I am starting treatment on hormone therapy. Am currently waiting to do blood tests.

Positives are it's not chemo and it's medication I can take at home with 3 months scans.

Thanks for the well wishes.

Dear @badnews943
Im sure this news has come as a shock, but I expect you are relieved to know the full diagnosis?

It sounds as though you are going to be on targeted therapy ( perhaps ribociclib or similar and an estrogen suppressant such as letrozole or anastrozole?) There are some excellent treatments for S4 BC and many women ( and men) do live very well on these drugs.

For now, sending you a gentle hug and do give yourself time to let your diagnosis sink in and gather your thoughts. Xx

Thanks ❤️

You must be reeling@badnews943 .

Without wishing to be toxically positive, it IS good news that you can do the treatment at home. Endless hospital visits so draining on mine and body.

I hope your sister can stay this evening.

Thanks. It's not a shock as the BC Dr told me she thought it had spread to the lungs as I had enlarged lymphs and a node. I was relieved my liver and bones were clear as I have grade 3.

They don't know what's causing the breathlessness as the lymphs are too small to be causing an obstruction and there's no mass that they know of.

The medication is Letrozole. I was relieved I'm not doing chemo and that hormone treatment is being used. I'm so pleased I can take medication and am not going to be traipsing to and from the hospital.

Thanks. I have to remain positive and have faith the medication will do its job. Yes, it's a relief that I'm not doing chemo but this medication has a lot of side effects. However, I was dreading endless chemo so feel a bit better about the situation.

Hope you got your cleaning done.

The cleaning will take weeks but I am lining up some people to call . You really did give me the impetus to get my arse into gear so thank you.

Pleased to hear it.

I'm so sorry to hear that you have indeed (as you had suspected) been diagnosed at stage IV @badnews943

That's definitely a positive that the treatment is oestrogen blocking medication rather than chemo. And also that it means you can take it at home.

Well done getting through the appointment today.

Maybe time to give yourself a nice treat? What things do you like eg bubble bath, ice cream, watching TV, visiting a garden centre, etc etc. (I've often been advised to be kind to myself during the cancer journey).

xxx

Thanks. It really helped having someone with me this time and the Dr and specialist nurse were sympathetic and kind which also helped.

Being kind to myself is really important, at the moment I'm trying to sort out the practicalities and can't do much due to breathlessness and lack of energy, but I'm going to look into alternative treatment if my symptoms improve. Thanks for thinking of me.

I’m on Letrozole OP. My tumour was lobular and these are typically very large at diagnosis because they don’t form lumps, they run along the tissues, so there’s nothing to feel in a lot of cases. Most lobular cancers don’t respond to chemo, but respond well to hormone therapy. My tumour was around 13cm when first diagnosed. I spent nine months on Letrozole to try to shrink the tumour before surgery. It was very successful in terms of shrinkage - it went to under 5cm, but after lumpectomy it was determined that because it had left tiny patches behind, the safest option was mastectomy. I had that in December as a day case and it was fine. Pain blockers inserted during surgery made so much difference.

I’m on Letrozole now and have had surveillance scans during the 15 months since diagnosis and everything seems to be under control. I’ve had very few side effects, although that varies from person to person, but there have been no menopause symptoms - just a few mild hot flushes and a bit of insomnia. Have they mentioned surgery at all ?

I'm really pleased to hear the treatment was so successful and with few side effects.

Unfortunately my cancer is not curable so surgery is not an option. They are treating it systemically with medication.

Just checking in and catching up with your updates. The news that it’s stage 4 must be very difficult.

Thanks for thinking of me. The BC Dr at my biopsy results told me it was stage 4, so I wasn't surprised at my oncology appointment to have that confirmed. I was relieved it hasn't spread further and that there's treatment as the BC Dr gave me the impression my time was up.

Today I've asked my GP to try and transfer my care and treatment to a specialist hospital. I spoke to the oncologist about it yesterday and they were happy to pass on my info. I hope I'm accepted as they're one of the best and are cutting edge treatment wise. Pain in the butt to get to but it will be worth it.

Just finished my needs assessment with social services. They're looking at a home help to do washing/put away shopping/clean once a week. Any help would be amazing so I hope it's approved.