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Bone mets - please join in

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Re: Bone mets - please join in

So saddened to hear of Carolyn's passing. She was such a lovely, bubbly lady full of warmth and great humour. Rest in peace Carolyn, you will be missed. My thoughts are with your family and friends.

Helen x 

Moderator

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I am so very sad to red this news.  Please pass on our condolences to Carolyn's family.

 

Best wishes
Anna
Digital Community Officer

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Thank you FF for passing on this most difficult  of messages. 

Like so many here, I found Carolyn's posts immensely  warm, funny and so reassuring, from the time I first got this secondary diagnosis nearly 2 years ago to recently. when she would talk about Capecitabine as her 'peachy pills'. Now always named that in tribute to her humour in the middle of tough times!

She will be so badly missed but we are fortunate to have benefited from her warmth and wisdom. 

With love and thoughts to her family at this so sad time

 

Maggie


@funnyface wrote:

I am at a loss  for words. I have received  a message from Carolyn's son that she passed on Thursday. That is all he said and asked that I let you ladies know. I left him know that she was loved and will be missed. FF


 

Agy
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This is so sad. RIP Carolyn.

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I am genuinely upset as Carolyn was so supportive and kept me going, along with some others  on this forum when I was first diagnosed . God bless Carolyn 

 

Wendy x

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Thank you ff for the news about dear Carolyn. So sad. She was such a supportive community champion, so welcoming to newbies. We got on so well online, often messaging each other in the middle of the night! A real friend. I hate this disease as it takes so many too soon. She so loved her little twins. I don’t know what to say now............I’ll miss you, Carolyn, but you earned your wings, so fly high. Always thinking of you, and thank you for being my friend,

 

mo

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So sad to hear we have lost Carolyn to this awful disease.  I did not met but exchanged lots of private messages. She was so such a supportive a very special lady. 

Thank you FF for letting us know. Pass on my condolences to her family. 

Linda 

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Thankyou ff for letting us know.i am so sad, This dreadful disease is so awful.

hugs to you and Carolyn's family.

Ramade xx

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I am so sad to read your message, FF but thank you for sharing. What a tragic loss, Carolyn was such a funny, positive lady taken far too soon. I will miss her hilarious chocolate addiction and her compassion as a community champion. Thinking of her family xxx

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Such sad news FF  All my love to her family, Carolyn will be greatly missed xx

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So sad to hear the news about Carolyn. She was a good friend to so many of us and I was lucky to meet up with her on several occasions. You can rest in peace and without pain now Carolyn. xx

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I am so sad to wake up to this, it genuinely brought a tear to my eye, Carolyn was a fantastic lady.

Nicky I also remember her saying about the chocolate teapot, always had a wicked sense of humour too.

FF, please send my love and condolences to her family, I know she was extremely proud of her 2 sons and grandchildren.

Another beautiful soul lost to this horrible disease, RIP Carolyn.

hugs Janette xxxx

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That is so sad. She was so so helpful to everyone. 

Community Champion

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What sad, sad news. Another lovely lady taken too soon by this horrible disease. Carolyn was such a positive member of our forum and will be so sadly missed, I’m sure, by us all. I will always remember her from her own definition of being as useful as a chocolate teapot - but she was so much more than that. Thinking of her family and friends at such a difficult time. Thank you FF for letting us know, hugs to you.

Nicky xx

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This is so sad, my thoughts are with her family. 

Love to all 

 

Community Champion

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I am at a loss  for words. I have received  a message from Carolyn's son that she passed on Thursday. That is all he said and asked that I let you ladies know. I left him know that she was loved and will be missed. FF

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Thank you ladies. 

Take care, hope you all have a nice weekend.

Janette xx

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Great news Janette! Long may the good scan results continue, Kxx

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Hi Janette 

Sorry I misunderstood yesterday regarding your scan results . I had been out for lunch with a few drinks I just wanted to send a reply to say how pleased I am for you. The oncologist you have is really on the ball which is very reassuring. 

Enjoy weekend . 

Linda 

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Hi Janette

I'm so pleased your results were good and after such a long wait. Blame the shortage of radiographers.

I get the impression tumour markers are less useful for bone mets than for other kinds.

Hugs to all 

Bon xx 

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Hi Linda, hahaha I wish I did get results that quick! I’ve waited 5 weeks for these results, it’s really not on is it.

That was my first MRI do this was a base scan for future MRIs, this has replaced the bone scan which they don’t tend to do anymore, having it repeated again in 3 months along with a CT.

Feel very relieved this evening as was convinced my time on letrozole was running out, she did say there are still a lot of options out there when this does happen though so that’s good to know.

Having a brain scan done too as I have been getting a lot of headaches lately, but I’ve been having problems with a clicking jaw and she thinks it could be down to that but wants to check it out just to be sure.

hugs Janette xx

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Evening Jannette 

So pleased your scans were OK and you are still stable. I can understand what you mean about tumour markers . Mine were always about 15 and they gradually started to rise and I was getting more bone pain so they did a bone scan that was way back in Jan 2014 unfortunately mine showed slight progression so treatment changed to EE. Mind that was the last bone scan I had. They say we should not get hung up on numbers I used to. Now I don't bother asking what they are. Really pleased for you now you can relax . Did you have the scans this morning and results this afternoon. Amazing I normally have to wait for a few weeks which is always a worry. Have a few drinks to celebrate. xxx

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Hi

I don't get my tumour markers done. I am in Scotland.  Is it something you have to ask for? Fantastic thunder and lightning storm going on just now. Just a pity my washing is out on the line getting soaked.x

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Hi ladies, it’s gone quiet on here again, hope everyone is doing okay.

just wanted to pop in to say I’ve had MRI and CT results this morning and thankfully still “Stable Mabel” I was convinced I was going to get bad news today as my tumour markers have been rising, they are now 40 , I questioned this and said I was under the impression that below 30 was within normal range but she said that isn’t necessarily the case, as long as scans are coming back stable and you feel well, what is the point in doing them then!!

take care hugs Janette xx

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Thanks Linda, hopefully all’s well, your mind just likes to play those scanxiety waiting games doesn’t it!!

hope you are all doing okay, have a lovely weekend.

hugs Janette xx

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Afternoon Jannette 

I agree with why do we have to wait so long for scan results . I have found that if everything is stable I have waited weeks but last year when I had progression whilst on cape it only took just over a week. I had gone to chemo unit to pick up cape and was told I could not have them I was given a letter to see oncologist instead. So what I am trying to say you are stable. 

 

Good luck. 

Linda 

Member

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Thankyou for posting this Kate, my daughter sent it to me aswell. i do hope they get a move on with this now,for all our sakes.

Ramade x

Member

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Very interesting Kate, thank you.

hugs Janette x

Member

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Interesting article about research which could lead to more targeted treatments.

 

https://www.bbc.co.uk/news/health-47886282?fbclid=IwAR34Ml_kIiab-CpUm7lHPX8uW568UmOzLP0P1g86R0ff_Qsc...

Community Champion

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WOW Mel, I think I would be changing oncs plus requesting copies of everything!! I could not deal with that onc for years. FF

Member

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Thank you Pea, I’m in Manchester and am lucky enough to under The Christie hospital, which also has a Maggies centre, I might make some enquires about visiting Maggies and may get some help/info from there.

Janette xx

pea
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Hi Janette,

I’m in Gloucestershire trust - Cheltenham is the main oncology unit. 

They are great overall and we are lucky to have a Maggie’s here too. 

I was reluctant to change onc at first but I was an emotional mess after each appt and was reassured by BCN and all NHS staff that sometimes the “fit isn’t right”. I haven’t looked back since. Try and talk to others about the other oncs in your area and get recommendations. Hope you get sorted xxx

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Hi Pea, you get great care from your team (after a rocky start) it makes living with this disease a lot easier. I’m seriously considering changing my onc, I’ve been threatening to do so for months but scared to it in case I regret it, I’ve been with the same onc since secondary dx 5 years ago and it has got quite strained sometimes. She can be very nonchalant and I’m made to feel like I’m mithering when I want answers, I do have a bcn but she is terrible at returning calls etc, basically I feel like everything is a battle sometimes.

Do you mind me asking what area/trust you are under? 

Hugs Janette x

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We have a right to see scans, scan reports, biopsy reports, blood tests results...you can ask for as little or as much as you want, and if you get them and don’t understand them, you can ask them to explain what they mean.  

 

tumour markers are something some oncs use more than others, but not necessarily conclusive. Mine were all normal even though I have cancer in at least 2 places in my bones.

 

i hope you get the information you want.

pea
Member

Re: Bone mets - please join in

Hi MeMel,

My lesion didn’t disappear- it got smaller after chemo. They measured it from PET ct scan. I had an onco who didn’t communicate clearly at all so I saw my breast care nurse about it. I was an emotional mess - I think I went through a whole box of tissues when I was in with her!! She printed off all my scan reports and letters to GP for me. We went through them together. She also arranged for me to change onco. New onc much better- more positive. I was lucky to have a BCN due to the fact it was all around the time of my initial dx that they found the bone met. However in our NHS trust we now have a secondary breast care nurse based in oncology. She’s really great and will help with any issues. I’ve also found the Breast Cancer Care arranged secondary BC meetings in my area really helpful. We meet at Maggie’s once a month and the secondary BCN is always there. It’s also great to talk to people in the same situation and inspirational for me,being dx last year, to meet ladies who were dx with secondary years ago and living life to the fullest. We recently had a presentation about scans as most ladies wanted to see what they were like so could visualise what onc was talking about. We are asked what topics we would like to see covered. Are there any meetings in your area? Check the BCC website. I would also find out if there is a secondary BCN and contact her. She can ask the questions on your behalf to the relevant medical staff. Hope you get some help - it’s hard emotionally and the more positive and helpful advice you can get the more you can cope emotionally. That’s what I found anyway!! Xxxx

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Hi Phoeba,

The lesion in your sternum had shrunk. Does it mean it disappeared from the scan? My previous onco used 'disappeared' to describe my 2 lesions status in abdominal lining but my current onco used 'shrunk'. Today see my onco, seems he has no intention to show me the radiologist's comment for my last CT scan. He immediately covered it after glancing the report. Anyway, the next CT scan is coming, this time must request for it. 

My CA15-3 tumor markers dropped from 23 before chemo to 12 after 8 cycles of taxol. I said the marker had been dropped to 0 when primary BC diagnosis but still recurrence. He said even 1 cancer can .....

I asked would I have regular CT scans onward like 3 monthly. He said No...only when necessary...when tumor marker raised or when there is a symptom....otherwise all the contrast in my body

I requested ultrasound for my liver lesion. He said NO...the lesion can be cyst...if it shrunk with chemo then it is cancer...but it has been there since 2011.

I requested for a bone scan. He said NO..it takes 6 months for the bone to heal...for the tissue to grow...finally he checked out my last bone scan was before chemo which was 7 months ago. 

I asked when will I start Letrozole. He said so sorry. He forgot.....

All NOs   8-(  8-(  8-(     

He told me my ECHO is 61%...and mumbling to say my heart is good...LOL  oh man, was 72% before chemo.

Take care,     xxxxx MeMel 

 

 

 

Member

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Nicky, hope you get an appointment through soon and the best of luck with it

Bon xx

Community Champion

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Hi

We’re all entitled to see the scan picture and the written report but I think a lot of ladies don’t want the gory details (as has been said by Janette) so most oncologists don’t give the info out unless expressly asked to. I must admit I didn’t want to see anything like that for several years, the shock of the diagnosis was bad enough! However I do look at the scan picture and understand it more now plus I will read the report on the screen but have seldom asked for a copy of it. My oncologists have changed over the years and I’ve found once they get to know me more they understood  what I want to know. If you request copies of all your letters to your GP you can also get those. I know I do from my cardiologist as I requested them at the time but I don’t for my oncologist, however I have had copies printed off for me by my GP if there’s any particular one I want.

As to waiting for the report I understand there is a general shortage of those radiologists/radiographers who can interpret the results, hence the longer wait. Bloomin’ frustrating for all of us though.

Good luck everyone whether you’re a newbie or an old hand, we’re all in this together.

Nicky x

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Re: Bone mets - please join in

I also saw my bone scan last year, she asked me if i would like to see it, I was a bit apprehensive but actually glad I looked at it, I’ve never really wanted to know all the gory details (don’t get copies of onc reports) but did actually find looking at the scan useful and less scary than I thought.

Janette x

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Are you in the U.K. If so, they don't tend to give you the info. you've just mentioned. However, my oncologist did show me my last bone scan.....x

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Thanks Linda, mine were 33 in January, just had them done again so we’ll see what they are now! See onc in a fortnight for mri and ct results after a long 5 week wait, why do we have to wait so long!!!

Nicky, good luck with results, excellent that they are on it.

hugs Janette x

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Hi Nicky 

Good luck with your MRI.  Least the oncologist now seems to be on the ball. 

 

Linda 

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Hi Janette 

In answer to your question about tumour markers. I was told upto 30 was within normal range. Yes Letrozole kept mine at 15 for over 3 years. They started to go up in twos over the next year. What they look for is a trend also if they jump up dramatically. 

 

Hope that helps. 

Linda 

 

 

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Yes silverlining it’s little old me from the old forum! 

Hugs Janette xx

Highlighted
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Hi Suzannah, 

Sorry you had to join this elite club.

They are obliged to give you a copy of your scan is you want one. They should be able to download it to a CD. You are also entitle to see it on the screen; some onc don't tend to show them as it scares some ladies but put your foot down and ask to see it. 

You also should be receiving a copy of the letter they send to your GP which inform them of your diagnosis/ treatment etc. I don't know which hospital you are in but if you can't get suggest that you contact PALS. 

 

Sophie 

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Re: Bone mets - please join in

Hi I now qualify to join this group. Have just finished 18 week course of herceptin and letrozole following breast surgery only to be told I now have secondary breast cancer in the bones. They were not specific but it appears to be widespread from what I could see on the scans. Why do they not let you see the scans? And why do they not send a copy of the diagnosis? How can I make decisions without knowing what I am up against? Any advice would be welcome.

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hi nicky,

 

wishing you the very best for your MRI......x

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Hi all and particularly Nicky,

 

I was so uplifted to hear, Nicky, you are 11 years on with your secondary diagnosis.  This has given me momentum. I'm 2 years in with sternum mets.  Been feeling bit sorry for myself recently, which is not like me, so am glad I picked up on this thread.  Onwards and upwards as they say. All the best everyone.  😃

Community Champion

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In response to the question from silverlining I'm just over 11 years since secondary diagnosis. That was bone mets and I went on to get liver mets about 5 years after.

I'm currently waiting for an MRI appointment to come through as my supposedly 'stable' CT scan has shown up a shadow on the liver that the oncologist hadn't seen (the report hadn't been written by the time of my follow up appointment so it just goes to show that the experts who analyse the reports do know exactly what they are looking for, unlike the less trained eye of the oncologist).

Nicky x

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hi rosie,

 

methinks i remember you from our 'olde' forum......x