Just diagnosed in the UK

catsteme
catsteme Member Posts: 48
edited June 2016 in Just Diagnosed With a Recurrence or Metastasis

This is my first post, although I've been a 'lurker' since my first diagnosis in April 2014. I didn't feel ready to post at that point, but I got a huge amount of information, comfort and positive vibes from everyone's posts. Since finishing my treatment I've just been getting on with my life and we were due to move from the UK to Spain on Monday. That all came to an end on Friday as I have been diagnosed with bone mets (sternum). I'm devastated. My husband is too. I am getting the impression that your brain does work out how to deal with this but I would love some reassurance that his is true and tips on how to get to that point.

I'm due to get more follow-up scans over the next week or two to see if it is anywhere else in the bones or brain, but organs are clear. I would especially love to connect with anyone in the UK who is in a similar position or has learnt to live with a Stage IV diagnosis

Thank you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Dear cath3rine, we are sorry for what has brought you here, and wanted so send you a warm welcome to Breastcancer.org. In this wonderful community you'll find that many members are living their lives with metastatic cancer and doing well, all things considered!

    Sorry you didn't get any real answer yet... sometimes the boards are slow during the weekend, but we're sure you'll soon get tones of support and encouragement! In the meantime if you want, you can read/post in the Bone Mets thread, where you'll be able to connect with a lot of women in very similar situations. If you have any questions, please don't hesitate to reach out to us. We're here for you, and sending nothing but good thoughts!

    The Mods

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    Shoot! I am so sorry you are dealing with mets. When will you get your scan results. I would also encourage you to hop into the stage IV forums. I believe there are some good threads on bone mets where you will be able to get lots of questions answered

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  • catsteme
    catsteme Member Posts: 48
    edited March 2016

    Thank you ladies - starting to find my way around these boards. Reading the stories and following the journeys on here is such a comfort.

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Hi cath3rine,

    I was diagnosed with mets to pelvis 2 weeks ago. I was 4 years out and thought I was doing really well until scan showed this. Very difficult to get my head around. I'm from UK too but think these boards are better. I've read more positive stuff here as there are a lot more people posting. I have a friend's sister in law who was diagnosed with sternum mets over a year ago. I have only met her once but last time I asked after her I was told she is doing really well, working away and told she could be around for many years as there are several treatment options available. I have seen her out and about and she is living her life. Although not the news anyone wants at least we have options for treatment. look through the stage iv boards as there will be several people with similar dx. I'm in the horrible bibble of waiting around to hear when my bone biopsy will be. I think once I have a treatment plan I will feel a bit better

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  • catsteme
    catsteme Member Posts: 48
    edited March 2016

    Hi Lillymillie

    Thanks for replying and I'm sorry you've found yourself on here too. It's rubbish! Do you have a treatment plan yet? I saw my Oncologist on Thursday and he is pretty stumped as to how I have such a big tumor (2cmx1cm) so quickly after finishing treatment (I'm only 5 months off Herceptin). So, he's sending me for a biopsy and PET scan before he gets me on a treatment plan. More waiting. I think you're right - the waiting is probably the worst part. Just so difficult to be 'normal' when you have it hanging over your head. These forums are fantastic though - I come back when I've feeling low and someone's story always picks me up. Best of luck with the biopsy - let me know how you go.

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  • mccathyg
    mccathyg Member Posts: 38
    edited April 2016

    Hi Catherine. Just wanted to check in with you. You must be devastated about Spain and I do understand that. After my third bout of BC we emigrated to Hungary and then last November I found that my BC had returned yet again. I had an operation in Hungary but unfortunately the margins weren't clear. At that point I knew I had to come back to the Uk to connect with my oncology team. I knew that I didn't have a choice so was able to get my head straight quickly unlike my hubby. :(

    I am now half way through chemo, which I swore I Would never do again LOL. i do not know what the future holds but I wanted to reassure you that you will find the strength to go forward. I like to feel in control so for me I research everything and talk to the doctors as equals.

    I try to see each recurrence as an episode and get the treatment that I need to stabilise it again.

    Anyway good luck with your tests and scans. Sending you a cyber hug (((())))

    Cathy


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  • Lillymillie
    Lillymillie Member Posts: 192
    edited April 2016

    Hey Cath3rine,

    I don't know how I didn't see this until now. Have added it to favourites so it will notify me. Did you have your pet scan or bone biopsy yet. My bone biopsy is on Wednesday...am hoping it's not a painful procedure.With the easter holidays it was a bit of a disaster trying to find a doctor to do it sooner, everyone seemed to be on holidays! The waiting has been driving me crazy. Hopefully you will get your results too and get stuck into treatment. Have read here someone on herceptin for something like 7 years and NED. It's a great drug. I have to see if biopsy is still er+. So all that to look forward to on Wednesday and breast care nurse the results could take a while to come back 😩

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  • catsteme
    catsteme Member Posts: 48
    edited April 2016

    Lillymillie - I had my biopsy last Wednesday and will be getting my PET scan tomorrow. The biopsy wasn't very nice. It's more uncomfortable than painful though and I think it's important that they do one to confirm the type of cancer and treat it appropriately. I won't get any results until my next appointment with my oncologist on 16th so we are going to head to Spain for a week's holiday straight after the PET scan. Apparently I might set off the airport scanners so that should be interesting! The waiting is just horrible isn't it. You switch between imagining it was all just a mistake to thinking about the worst outcome (and everything in between). I've been pretty bad over the last week but am realising that no amount of thinking about things is doing any good. The only constructive thing to do is to stick it at the back of my mind and continue with life as it was before. At least that's the plan! I'll be thinking of you tomorrow when you have your biopsy - all the best.

    Cathy - thank you for your note and hug - you're very kind. Wow - 4 rounds - you're definitely talking from experience! I'm dreading doing the chemo all over again too. My hair has only just got back to the length it was before I was last on chemo and I don't think I am mentally prepared to do that all over again. I've been feeling very sorry for myself over the last week or so and I hope you are right that I will find the strength. Good luck with the remainder of your chemo and well done for being so strong.

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited April 2016

    Hey cath3rine, yeah they said to day it would be at least 10days before results of the bone biopsy. The waiting is really awful. Mind you a week in Spain sounds like a perfect distraction! It will be great. Im supposed to be going to Spain for a long weekend at end of the month but no clue as to what treatment will be or when it starts so all a bit up in the air! I had a lovely dinner Saturday night with another couple for and had a proper laugh. They have no clue of my situation and it was just what we both needed to stop thinking for a bit! Got a call from one of the radiologists as a heads up to tell me to remove all hair downstairs or the nurse will come at me with a razor in the morning! Im horrified at the thought 😨 Half that hospital have seen me starkers at this point so I suppose a few more won't hurt...🙈

    Have fun in the sun and all the best for the 16th!

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited April 2016

    Hey cath3rine,

    Hope you had a nice break in Spain. Hope it all went okay with your onc. I'm still waiting on my bone biopsy results. Have to see mine tomorrow but results won't be in. Maybe we will discuss bloods etc. Have they come up with a treatment plan for you?

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  • catsteme
    catsteme Member Posts: 48
    edited April 2016

    Hi Lillymillie

    Yes, we had a lovely break in Spain - thank you. It was difficult to put everything to the back of my mind but probably a lot easier away from home than it would have been if we'd stayed put. Got my PET and biopsy results on Saturday and it was confirmed that the sternum tumor is a secondary. They haven't found any more sites which is great news so they are now looking to see whether an operation is feasible. I think it is touch and go because the sternum is what holds you all together! So now more waiting... I have a bone scan today (which will be my 7th diagnostic test in a month). My oncologist doesn't expect it to change the treatment plan, but the PET didn't do my long bones so they are just making sure they have a full picture.

    That's taken a long time to get your biopsy results. The waiting is just horrible, isn't it. How was the actual biopsy? Did you say that your PET was clear elsewhere? Are you finding that you're starting to get your head around all this now? I feel it's getting a bit easier but am still having some really dark days.

    Good luck today. Hopefully we'll both be on the road to recovery soon...

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited April 2016

    Hey Cath3rine,

    Met Onc earlier. Results arrived out of the blue late afternoon. Confirmed breast cancer in pelvis. He is now adding a small area in my femur. It didn't show on xray or ct but showed a little activity on pet. Just confirmed in bone. Everything else looks okay for now. The receptor results weren't in . I was er+ 8/8 and pr-, her2-. A bit of a cliffhanger to be told it could be chemo or an Ai. I hope I'm er+ like before as I have more options.

    Regarding my mental health, I have tried bbjust kept so busy. We have been out a couple of times with different friends, danced all night to a great band whilst sober! I have painted all the garden furniture and fences, done lots of gardening, steam cleaned my house from top to bottom so it is gleaming. All out of the norm activities for me but kept my head focused. It is getting slightly less shocking and am clinging to the positive stories. I know not everyone is so lucky but I'm trying to focus on things going well.

    Getting mapped for radiotherapy this week. He is going to zap those areas first before treatment. That should start next week. Would just lovely to no know if it's er+. I have another pet scan too next week. They need a more up to date one than last month. At least something is happening until we have a bigger picture.

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  • Absfabs2020
    Absfabs2020 Member Posts: 2
    edited May 2016

    Hello everyone

    I too have been a lurker since my initial diagnosis in 2011. I had another diagnosis in April of Stage 4 with liver mets. Absolutely floored me and my husband but we've regained our 'gallows' humour which is helping us cope somewhat!

    Today I had 5/24 weekly placlitaxel and Avastin. I hunk he worst part is he cold cap but I seems to be working so far. Has anyone else had this treatment?

    I live in London so it's nice to find other UK people on here

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited June 2016

    How are all the UK people getting on?

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  • catsteme
    catsteme Member Posts: 48
    edited June 2016

    Hi Lillymillie,

    Gosh, a lot has happened since I last posted in this thread. I had my sternum removed and what was meant to be a 2cmx1cm tumour ended up as something the size of a kitkat. Although the operation was a great success and my recovery has been pretty rapid, unfortunately they didn't get clear margins. My latest CT now shows up a tumour in a mammary node and another small one on my lung. I had hoped that having such a major operation would at least buy me a bit more time before anything else cropped up. So it's back to chemo again for me. I start on Kadcyla/TDM1 tomorrow and every three weeks thereafter as long as it's working. Apparently the side effects are a lot more tolerable than the other option I was offered. How is everything with you? Have you finished radio yet?

    Absfab - How is your treatment going? Is the cold cap doing it's job?


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  • Lillymillie
    Lillymillie Member Posts: 192
    edited June 2016

    Hey Cath3rine,

    Yes a lot has happened to you! That's good that the op was a great success. I'd imagine there is just threads left and chemo should mop it up. There's another lady on here called JeninMichigan, she NED and has been on herceptin for years and doing very well. It's inspiring to read! She had liver mets too.

    My rads were relatively easy. A bit tired after it all. I was given zoladex to shut down my ovaries and the first cycle didn't work. I had a scan a couple of weeks after rads and showed a spot on my spine and one on my sternum. My arimidex was useless while I was still having periods. Zodalex appears to working now but of course it was a shock to have more spread so early on. Have another scan on Thurs and meet onc on Monday. I think it will show worse areas as this drug can take 12-14 weeks to kick in. The arimidex makes everything ache but other than that generally feeling okay. I have 2 chest nodes that were enlarged so he'll knows what they have been up to. Chemo was mentioned if there was any more spread but he wanted to use AIs first. I was hoping to go on a sun holiday and really don't want onc to pull the plug on my plans. We'll see! It so strange as I feel generally healthy and well except stuff inside me is misbehaving.

    Absfabs2020 hope your treatment is going well and cold cap has been successfully!

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  • catsteme
    catsteme Member Posts: 48
    edited June 2016

    Lillymillie - Sorry to hear about your progression. I felt the same as you - to have spots pop up in other places before you've even got your head around the initial diagnosis is really hard to handle. I think this is probably quite normal though as I guess it takes some time to determine the right course of treatment and for it to start working.

    I had my first TDM1 infusion yesterday and I feel pretty good. Fingers crossed it stays that way (and it works!). We're planning to go to Spain on Sunday. My onc is quite happy with that, so please don't think that travel is ruled out even if you do have to go on chemo. It's just a little more difficult to schedule.

    I hope you scan went okay today and good luck for Monday.

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  • wintersocks
    wintersocks Member Posts: 922
    edited June 2016

    Hello UK ladies

    I am UK too. It's nice to see you here and not nice too, (if you know what I mean!). I am in the North, in The Pennines. Lilliemillie we have an almost identical dx, although as far as I know I have no mets to bone and i am sorry to hear that you have, i do hope they can get them under control for you. My consultant who I saw a week or so ago, told me that I should I recur, there are many treatments that can be tried to get back to NED.

    Cath3rine, I hope you are able to relax and have a lovely time in Spain, still not been there yet!

    Absfab20, Hi there, it's great to hear you and hubbie are able to draw on your gallows humour but it's horrid you have to. I used to live in South London many years ago and my son has just finished his degree there and he had the best time ever . I never had the cold cap, I have heard it can be uncomfortable. I wish you well with your tx going forward.

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited June 2016

    Was writing a reply to this last night and I feel asleep mid sentence!

    Cath3rine , that's great you a feeling good on your treatment. That's one of the newer drugs and I've heard it described as remarkable so let it do something remarkable to your mets and send them packing! And you don't lose your hair on that one right? That's the thing that worries me. I can deal with all the treatments thrown at me but I'd rather do it privately. Hair loss will make me look sick and I found that hard to deal with. Great you can go on holidays, am pleased to hear that. We all need a holiday or three!

    Hi wintersocks, I hope that doesn't cause you any anxiety knowing we had similar dx. Lots of women are doing brilliantly and i hope you stay well. It the strangest thing. I'm fit, eat well and felt great. Asked for a scan as I hadn't had one in a while and had pulled a muscle in my groin running and boom mets to pubic bone and femur none of which I felt. Yes there a lot of treatments I'm told. I'm still at the stage that I'm not sure anything is working but it would be great in a few months to get a stable scan and hope to find a drug that will works for me. As I said I'd rather not do chemo for as long as possible.

    This site is definitely more informative than some of the UK sites I find.

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