Secondary breast cancer

Feeling kinda bamboozled  :sad: 

let me explain. 

In July 2021 I had a mammogram,  2 weeks later I was recalled for another mammogram where they told me they'd seen a lump and was doing a biopsy but was 100% certain it was breast cancer. 

2 weeks later I went in for the results and it was indeed breast cancer,  a lumpectomy was booked for a month later, I also had  an auxiliary clearance where they removed all the lymph nodes and out of the 18 they removed 13 was cancerous,  5 weeks later I had further surgery to get clear margins which they managed to get .

I was supposed to have undergone chemo and radiotherapy plus start Letrozole (hormone blockers)  and have a CT scan and bone scan,  I turned down treatment,  the bone scan was clear , the CT scan showed a shadow on my lung and kidney,  further investigations showed the kidney shadow was a fatty lump needing no treatment,  

I had to have another CT scan 3 months after the first to check on the lung nodule which I had in March 22 , I received the results over telephone and they told me the nodule had changed and I'd need another CT scan which I had at the end of May 22 , I received those results on the 6th July 22 .

The lung nodule turned out to be 4 tumours on the left lung and 3 tumours on the right lung,  apart from the one which is 13mm and is encroaching on the Airways and making me cough and a bit breathless the others are about 4mm and 5mm .

 

It's breast cancer that as spread to my lungs  :sad: there is no cure only treatment,  they've started me on Letrozole which I've taken 2 so far and will take the third today,  they also want me to take  (name unsure of) a tablet that acts similar to chemo , I'll be on them for life .

 

My problem is I can't tolerate medication very well and even the medication that usually causes no side effects I still get them, I can't tolerate statins , and react to most diabetic medications too , some pain killers also cause an reaction :cry: so with that in mind I'm going to turn down the chemo like drug , I'm trying the Letrozole to see how my body reacts to it .

 

The aim of the Letrozole is to hopefully shrink the tumours or at least stop them growing or spreading .

 

I have no family support apart from my partner and I have only one friend who turns everything into a joke (which isnt always helpful) and starts joking about her catching it or throwing comments at me like she will make her own cup of tea because I have cancer and can't do it .

 

I'm kinda stuck here and alone , I'm not the sort who looks for help from other people and tend to block things and bottle things so this is huge for me to write here .

  • Hi.

    Thanks for your reply. 

    It's such a *** world right now , I do think they downplay the side effects , well they get money to give out drugs hehe but I do think more awareness is needed .

    They've not mentioned surgery to remove the most troublesome , I'm guessing where it's situated means it's not quite possible to do , the BCN did tell me she wasn't sure he'd do biopsy and stuff because it was hard to get to. 

    I do believe I have to have 3 monthly CT scans tho .

    I e decided to try the Letrozole first and if I cope with it then I'll go on the the palbo sounding drug, sorry names confuse me .

    X

  • Hi Violetgirl.

    Yeah, it's not worth getting drawn in. You've definitely got it right focussing on what matters to you and enjoying every day best you can. But I'm sorry you've had to deal with all you have done. It's not pleasant and can be very upsetting to have what you are going through, which is huge, brushed aside like that. And I really know how that feels because it happens to me all the time. Everyone seems to have a bigger call and I ended up doing so much caring I got a telling off from the doctors who told me I needed to look after my own health too.

    I've also reached that point where I now confide nothing about my health to family members. Not even the person I live with as they have a brain condition and would worry and get distressed and can no longer deal with anyone's emotions save their own. The personality change has been horrendous. There's no name for this brain condition because the doctors have never seen a pattern of atrophy like it. Cancer is horrible, but at least it has a name. I do hope you are able to access support as and when you need it. We are not getting all the support we were told we should because resources are so stretched, which can place a great burden on the care-giver – too much in many instances. So I really hope you have got what you need practically. Take care, Violet. Love Rose xx

  • Hi sorry you've had to go through all this. I really liked your suggestion about running dedicated support groups and factoring quality of life more. One reason they don't like to do it, I think, is because co-morbidities can distort things. But also they do like their survival statistics because it's a measure by which they are judged. Maybe the system is at fault for what it takes to be the right measure of success. And patients vary a lot in terms of what they want from treatment. For some, it's be here at any cost, for others it's way more nuanced. It's such a shame resources are so stretched at present. xx

  • Well you finally got some replies! I apologise for going a bit off-track. Hope the Letrozole works out for you. At least there are a few things in the bag to try for now. I read your other post (headed Letrozole) and you do have a lot to deal with healthwise but you seem quite stoical about things, which I find admirable. Really hoping your luck starts to turn for the better after the 18 months you just had. xx

  • Thankyou for taking time to reply- I definitely  would have appreciated  my oncologist being more honest with me about the anastrazole - ok they give you lots of leaflets and they tell you where you can find info on the Internet but these forums give people the chance to chat to others who are on treatment - but I do think the NHS could look at proper aftercare for women who are on  first and second line treatment for secondary breast cancer - patients on traditional chemo get dedicated clinics during their treatment where they can talk together and with specialised nurses  but if you are on hormone therapy and or the other drugs like palbo then there is no dedicated support 

  • I totally agree with you! In an ideal world there would be more support than there currently is!

    I also feel it important people report side effects using the medicines reporting scheme (see patient information leaflet) so that drug companies understand fully what impact their medicines are having. I think side effects are massively underreported and that too needs to change. xx

  • Forgot to say I love your photo! What an adorable looking cat. Looks so completely chilled out makes me feel relaxed just looking x 

  • Haha that is Elf he was 1 in Feb he is a very chilled cat , also a bit skittish at times and mad , I should also mention he is totally lazy too hehe.

     

    I have a all black female called Nala who as just turned one, she is a very mardy cat and doesn't like humans,  she will only come near us when she's desperate for food and none is down x

  • Your cats sound very characterful! Nala might get a bit more human-friendly in time. Cats always know what they want... I thought Elf looked quite young. I miss having cats, but cats often come up to me when I'm out walking begging for attention. It's funny because they never go near the person I'm with even if I stand back to give my companion a chance and he's down on his knees coaxing. Then my companion gets mardy... Luckily dogs prefer him to me, which cheers him up x