My OH was DX with multi-bone mets and a small lesion in the liver in February 2010.Within 3-4 months of treatment with Femara (then the generic Letrazole) and monthly Pamidronate, she began to “improve” and felt a lot better.About 18 months ago, the ONC started monthly checks on Tumour Markers, as well as the usual blood tests and these results had consistently improved, so that my OH was in the normal range for many months. About 4 months ago, the tumour markers started to “go up” from <25 kiu/l to 41 kiu/l this month. The ONC said that these increases were not significant and that he would only be concerned if they had increased by 60-80 or more.
I am aware that Tumour Markers are only a small part of prognosis (and are not considered reliable on their own), along with how my OH is feeling, other blood test results (all within the normal ranges) and scan results. My OH’s scan results have shown “stability” for the past year.
The next scan will be taken in August and this will provide more accurate information, but I can’t help worrying that the Tumour Markers indicate that her cancer is beginning to become resistant to the letrazole/pamidronate treatment. I find that once a measure is used as part of my OH’s monitoring, that it becomes reassuring when the results are good, but really worrying when they are not.
Am I right to worry or should I be content that all of her other results are good?Any advice would be much appreciated. Thanks.
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Jack it is worying when there are changes but as you yourself said, TMs are only part of the picture and many oncs don’t even measure them. If your wife is feeling ok and all other signs and symptoms are ok/stable it is possibly just a blip, I believe TMs can be affected by several things not necessarily cancer related. Obviously you will be concerned at a rise and if the trend continues upward it might be worth asking if there are other tests ie MRI worth doing(I’m assuming the scans are CT?), but for the moment with everything else being ok and remaining so I think that the wait for August scan is reasonable though stressful. Just keep an eye on things and if anything changes or new symptoms develope cntact the onc team.
You sound like a lovely caring partner and I’m sure your OH is glad to have your support, I wish you both luck and hope the TMs fall again soon.
Thanks for your reply JulieD.Since I posted re: the tumour markers, I had come to the conclusion that you suggest. As my OH has shown “stability” for quite a while now, she has soft tissue scans every 6 months and a bone scan every 12 months, but remains a lot better than she was 2 years ago. Of course she still has the fatigue, hot flashes and some bone pain and stiffness in the joints, but these are “manageable”, if not exactly pleasant for her.
We will wait for the scan and keep a watching brief, though we will probably keep our fingers crossed as well - you can’t be too careful!!
Thanks again,
Jack
Jack
While I have tumour markers done regularly, I have asked my onc to stop telling me what they are as I figure there is nothing I can do about them and they scare the crap out of me!
I feel very well, despite progression in my liver and a new diagnosis of brain mets to add to the lung, breast, lymph and bones.
I think it’s so important that oncs don’t get too focussed on TM’s and my onc places much greater importance on scans and how I feel in myself. While for some, TM’s are a good indicator of disease status, for others they tend to bounce around all over the place.
Enjoy the day and hope you both have a good summer.
Laurie x
Thanks alesta29. I have chilled out re:tumour markers now and scans results are more of a definitive view of reality. I’m probably a typical man, in that I crave immediate solutions to everything in life, but I have begun to understand over the last 2 years, that, unfortunately, there are no easy answers where breast cancer is concerned.
Sorry to hear of your “progression”, but I wish you a good summer also, although if you look out of the window today , you certainly wouldn’t think this was summer!Hope your progression reverses soon and that you continue to feel very well.
Jack69
Hi Jack, I missed your previous posts. I have had tumour markers done over many years. I have had extensive bone mets since I was diagnosed with mets in 1999. My Consultant does not think my tumour markers are always relevant and usually considers how I am feeling generally. There are different kinds of tumour markers. The ones I have done are CEA and CA125 but some ladies have other TMs. One of mine was recenty very high over 3000! When TMs do come in useful is when you are on chemotherapy. I am on chemo right now which is given orally by tablets, 2 weeks on and one week off. I know they have halved already and this indicates to me that my chemotherapy is doing its job. I am not certain if this applies in your wife’s case. My Consultant doesn’t have my TMs done all the time ony every few months when she reviews me. I also wanted to add that I have had BC since 1989 and bone mets since 1999. There are ladies like me around who are still alive and kicking even although we had a poor prognosis many many years ago. Treatments have changed even since I was diagnosed. I still enjoy life although this did not happen overnight and I still remember the fear of finding out that my disease had been progressing without my knowledge. I wish you and your wife well and hope her treatment works well for her too. It can be scary at times but one day at a time is all I try to do. Another tip, if your wife feels tired encourage her to rest as usually that is your body telling you to take it easy. I often pop back to bed to lie flat and rest, usually with a book in my hand until I nod off! Love Val
Hi Val,
Thanks for your reply, some very useful thoughts there.I do encourage my OH to rest when she feels tired, but other times, it’s like trying to stop a train rolling down Ben Nevis!Still, I expect we will learn through experience how best to manage this aspect.
My wife’s main concern, I think, is that the BC will attack her soft tissue, as she had a small liver met on DX and that the damage would be greater and more rapid, if that were to occur.However, she is pretty closely monitored and hopefully, this will result in fast treatment change to try and resolve this, if the worst scenario arises.
She is relatively well at the present time and does enjoy life as much as she can. A scan is due later this month and we will see the results in August and I’ll post again when this has came to pass.
We both hope that you are still enjoying life and continue to do so. Thanks again for your personal insight.
regards,
Jack
Hi again Jack, I think your wife’s conerns are completely understandable and I have worried about that myself. But my hospital keeps me closely monitered and I have regular scans. If I have any worries there is a Breast Care Nurse who specialises in Secondary patients and I can phone her at any time if I am worried or want to talk something through. Not all hospital have Secondary BCN but there is usually a team of BCNurses. Is there a Maggie’s Cetre near you? They are quite helpful as are the McMillan Nurses. Our hospital has recentyl set up a Secondary Meeting every month in a room set aside for McMillan where ladies like me can meet up. When I was diagnosed I did not know any other person with bone mets and I had no help like this BCC site either so felt very scared and alone.
Another question. Has your wife applied for Disability Living Allowance (DLA) and also has she applied for a Blue Badge? I have found the badge to be invaluable as it allows me to go right to the shop/hospitall/library door thus conserving energy to do the things I want to do. I do get very puffed at times. The DLA application for is a huge one but the McMillan Nurses and BC Nurses may be able to help your wife complete it. The DLA is not means tested but there is an age limit (Think it is 65 but not certain about this) that you have to be to claim it. But you can stilll receive the DLA after that age and you can also work and receive DLA. I was worried about paying the mortgage and bills when I got my secondary diagnosis and did not expect to live long and this took the money worry away. If your wife is able to claim the higher component of DLA you can then apply for a Motobility car. But I am racing ahead here. Feel free to ask any questions as they come along. I knew nothing when I started but it has been a LONG learning curve. I don’t claim to know all the answers but I know some of them! Val
Val,
Thanks again for your input.
Yes, my OH is in receipt of full DLA and has a blue badge and very useful it is too. She also has a Mobility car and this is a great help to both of us. The Macmillan nurses in this area (Bristol) provide first class support and are brilliant. D also had a long period of counselling from St. Peter’s Hospice, which was very helpful indeed, especially as it was given by “one of our own” from Scotland. It was so good to talk with someone who understood the Scottish psyche!!
She hasn’t used the Maggi centre, it is quite new and is more than an hours drive from our home. However, she does attend a recently set up monthly meeting of others with secondary breast cancer, which is ran by the Breast Cancer Care Organisation and the Macmillan nurses from BRI Oncology. She is due to attend her second meeting on 11 July and is finding that this is a very useful and supportive forum.
There seems to be excellent support in this area and we are making good use of it all.This helps a whole lot, especially when you know nothing about the dreaded disease at first and probably kept us both sane and more able to carry on after the initial shock of the DX in February 2010.
So glad that you have discovered all the support in your area and that it helps you as much as it has helped us.Thanks again for the suggestions, although we do use the support available, we hope that your post can help others who read it.
Hoping that you continue to be as well as you can be,
Kind regards,
Jack