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 .

  • So pleased you've posted on here and hope you'll get lots of support. I could really relate to your post because I too react to lots of medication, which does limit options. I've now found a common ingredient – not the drug per se – in the pills is the likely cause of my issues. If something like that were the case for you too, you might be able to find versions of things without the ingredient to which you are either allergic or hypersensitive. I actually found, for example, I could take one version of a medication but not another. Checked the pack and the difference was my suspect ingredient. People on this forum have said some brands don't work for them but others do of same medication! People are very different in terms of what they react to, and hopefully you can find something that works for you. In the meantime, I'm sending you a big virtual hug. Sorry I'm not the best with words. Hopefully, someone else can give you better emotional support than me soon. [@Jassoscared][@Violetgirl][@Jolamine]‍ I just felt I had to tell you what happened to me with medication in case it could help at all. Really wish I was better with words. Sorry you don't have much support to deal with this. It must all have come as a big shock. xx

  • Here is the discussion I read a while back on the subject of different brands and Letrozole. Remember everyone is different. Someone's "bad" brand could be another person's "good" brand! My daughter also has to get a particular brand for her medication (a slightly different medication but one also used to treat cancer).

    www.cancerresearchuk.org/.../glenmark-letrazole-how-have-people-got-on-with-this-brand

    A lot of people on here do take medication despite significant side effects because alternative of not taking anything is a worse option. Good luck! X.

  • Thank you for your reply unfortunately no one else as but that's OK I'm used to no one replying haha.

     

    I'm glad I'm not the only one who is sensitive to medication and you may have a point re different brands etc , I did try different brands and names of statins and got the same reaction on them all, including the none statins haha .

     

    I'm trying the Letrozole,  see how I cope with it and if I cope fine then I'll consider the Palbociclib  , I am due to speak to someone weds so I will mention it to her then x

  • If you don't get a reply you can either keep replying to yourself (and it will bump the message up) or just post a new message in a few days. This time of year people can be on holiday. Also it's a weekend and there's been a lot going on with tennis etc. Plus it's very hot and some people won't bother being on -line then.  Really hope you are able to work out a good combination of meds for you with your oncology team. Best thing is to tell them your fears. Chemo can be tailored to find dose that fits your circumstances best plus there are often different choices depending on cancer type. If there are side effects you feel you can't tolerate meds can be changed. Team will be best placed to advice. I know a lot of people reacted to statins so you're not alone there. Hopefully you'll find something that can help! x

  • Hiya, and welcome to the forum that no-one ever wants to join.  First of all, may I say how sorry I am to hear you are going through this.  I had breast cancer for the first time back in 2019, and  like you I had a lumpectomy and some lymph nodes removed, but the cancer returned in the same breast 18 months later.  I went through the chemo, and at first it seemed that with another lumpectomy I would be fine, but I was recently told that the cancer has spread and is now stage 4.  I am sorry that I am unable to give you any advice about the medication that you have been offered because for several personal reasons (which I won't bore you with the details of), I have refused any further treatment.  However, it is great that you have joined this forum because there are so many nice folks on here, and the good thing about it is that everyone understands how you feel, because we have either got cancer ourselves, or have had cancer in the past or are caring for somone with this disease.  I am sure your friend doesn't mean to come across as flippant or uncaring, but very often, family members and friends simply don't know what to say or do when confronted with a loved one who has been diagnosed with the big C.   Hopefully you will get some replies from people who can advise you abour your meds, and any time you need to have a chat, or simply to have a rant or let off steam, you are very welcome here.  When I first joined this forum I was at an extremely low ebb, but I was made to feel welcome and it really is such a nice community spirit, anyway, sending you virtual hugs, much love, Violet, x

  • Hi and yanks for your reply . 

     

    My friend well I think she just doesn't know how to react , she thinks I've suddenly become useless because I've got cancer , she's always been a weird short haha.

     

    I did refuse treatment last year for personal reasons and I am questioning whether there would be as many tumours now if I'd undergone treatment although I do already no that answer .

     

    I have already decided not to take the tablet , I think its starts with Pablo and hoping the Letrozole will do the job , not looking forward to any side effects though . 

     

    Already suffer joint pain and aches,  sleeplessness,  tiredness,  hot flushes,  moody etc so guess as long as they don't get worse then I can handle it .

     

    I'm not even sure how I feel about being on this site , maybe shock, angre, stupidity   disbelief,  the list goes on x

  • Hi again – I think it's normal to feel a range of emotions. To be honest, the reason I don't try and give emotional support is because I sometimes say wrong thing and am terrified of upsetting anyone in a difficult place. My own perspective is that I live with a life-threatening non-cancer illness (could kill me any day) so that cancer issues that I have to deal with always feel secondary and I lost someone very very dear to cancer so many years ago (almost 50 years and I'm still in my fifties) that for me every single day I have is just a bonus. There is a lot of cancer in my family so I know people deal with it in many different ways. Some with advanced cancer just shrug things off and carry on as if no big deal – yeah hey radical mastectomy, radiotherapy, tamoxifen (different breast cancer to yours so different treatment) plus radical hysterectomy plus multiple other cancers or just have a lung removed or something quite big but which gets mimalised within my family (hey is this some competition one wonders like the standard been set and no one whose been through less can complain – how stupid is that!). And, unlike me, most family members take the medication no question! Coming on here there's a wider perspective. I feel much less alone, which really helps. x

  • Oh and your very first word "bamboozled". Really sums it up for me. Exactly how I feel a lot of the time!

    Please don't feel stupid. I meant to say that and forgot. You made what you felt was the right decision. It was your decision and there's no point in beating yourself up. Not ever. Who knows what would have happened down alternative route? Focus on the path you are on now because frankly it's the only one that counts. I have had life-long issues surrounding medication and understand very well the agonies one can have over whether to take something or not. 

    The symptoms you are describing sound very familiar. Don't worry about being a moody monster. We all get it! Sending hugs x

  • Hi RoseStarBlue.  What you said about families treating each others illnesses like a competition reminded me of my own family.  I am convinced that my eldest sister was actually jealous that I was getting a bit of attention when I got diagnosed with cancer twice...........I know it sounds crazy but it's true.  My other sister kept telling me, "there's people in this world a lot worse off than you".  Recently I was informed by my Oncologist that it has spread and I am now stage 4...........I have only told my husband.  I can't be bothered telling my sisters.  Knowing that I am not going to reach  old age has put a lot of things in to perspective for me.  My focus now is spending time with my husband and enjoying what's left of our life together.  Can't be doing with people like my sisters in my life.  Take care, Violet, x

  • Hi just seen this - new tothe forum 

    I had a recurrence of left sided breast cancer in  July 2020 - resulted in mastectomy- also found a very early cancer in right breast so - I had lump and sentinelnode removed - also a nodule was seen on my right lung which they decided they would check in 6 months with a scan - I had no radiotherapy due to bad reaction ( damage to nerve supply to left arm during previous treatment in 1999) and I had the onco test on breast tumour that said chemo would only reduce my risk of recurrence by 7 % - so no treatment except I was put on anastrazole ( similar to letrolozole in that it blocks oestrogen ) - lung nodule grew on scanand so I had a pet scan which showed it was reactive meaning it was active - I then under went lung surgery VATS procedure where they happily told me afterwards that they had removed two nodules ! 15months  on I have recovered from the lung surgery developed sciatica down my right leg post op - so physically one year of recovery - I am still on anastrazole which causes hot flushes and joint aches and I am on 6 monthly review scans - it is true that most family and friends move on after a while - they think that if your  not having chemo in the traditional sense ie what they see in the media - losing your hair etc then you must be ok ? But what they don't realise is that 'tablets'  and surgery can have side effects- you may not  be as physically able as you were and they certainly don't think about you might feel mentally living with the physical and mental challenges that have been forced on you- I also feel that very often oncologists are now looking at drugs that may keep cancers under control for longer but they look at general statistics based on studies of thousands of patients and play down side effects - when I asked my consultant what side effects I would have he said I might get a little bit of joint pain no mention of the hot flushes nausea memory problems and what happens to your body when you block oestrogen production - I think that breast care nurses should run dedicated support groups for people with secondary breast cancer treatments may be have a specialist nurse for secondary breast cancer- treatment teams must be more honest with patients and properly assess quality of life on these treatments when studies are undertaken. 

    I understand you have a few nodules - have your doctors considered surgery on the largest one ?

    I