My recent CT scan has shown a slight thickening in the lung and a tiny lesion on the top of my liver which has subsequently peoved invisible on an ultrasound. My tumour markers are up however and the oncologist is of the view that the cancer is “rumbling around” and is probably related to the thickening in the lung. I am worried about the liver and have asked for an MRI but need to consider treatment options. I had FEC last year and have had arimidex for about 8 months. I was really hoping that it would have held it in check for longer. My oncologist is anxious not to use up treatment options too quickly. I wonder if it is better to try more chemo or switch to something like Letrozole. I am not HER positve so Herceptin is not an option - I was told that was good as the cancer was likely to be less aggressive but that doesn’t seem to be the case.
Also I am currently being treated privately and whilst I have been happy with my treatment I wonder if I should press for a referral to the Marsden to double check my treatment.
Any advice would be welcome
Kathryn
I’d definitely ask for a referral to the Marsden, for a second opinion or to switch to NHS care. Also the Marsden has been doing a trial on the use of fulvestrant together with anastrazole for postmenopausal women with metastatic disease that has progressed during aromatase inhibitor treatment. (Dr. Dowsett, head of biochem. here published a paper about it. The contact of the trial is Dr. Stepehn Johnstone. Name of the trial is I think SoFEA)
Although they say that early detection doesn’t on average affect the outcome of secondaries, it affects the quality of our lives to keep any tumours small and to remain symptom free, which I guess you are. I still am despite detection of rising tumour markers in June 2006 no doubt because of prompt radiotherapy to hip, spine and chest while the tumours were small.
There are other technologies for detecting tumours. Maybe a PET scan would show up anything active. It detects hotspots of metabolic activity - where cells are growing faster than the surrounding tissue, often finding tumours too small to show on other scans. That’s how finally my onc. found my secondaries after 6 months of searching with other scans and tests.
Letrozole/Femara is according to one trial I read more active than arimidex. I was on arimidex when I had the recurrence and spread. Now, after radiotherapy, I’m on Femara. (It was too expensive to be prescribed when I started on Arimidex tho the onc. agreed it was potentially slightly more useful.) I’m happily, as yet, HER-2 negative - less aggressive and Herceptin itself is a very strong drug indeed which in controlling cancer also has heavy side effects in some people. So be glad not to have it in your list of options.
BTW I had private surgery twice to jump the queue, but all the rest at public expense.
Wishing you well, Kathryn
Jenny
I am being treated privately it is just convenient for where I work … and my onc in the same one I would have on the NHS so I am sure I am getting the same treatment… I have bone and liver mets I was also on Arimidex which didn’t work and exemestane… I am not her++ either and like you was told that would mean mine was less aggressive. However at the moment I am having vinoralbine chemo about half way through and I am waiting to be told whether it is working but I feel that my liver is huge and am quite sure it isn’t working and rather down at the mo… will se the onc on1st and ask about other treatments etc liver ablation I’ve posted elsewhere about that and have had some feed back.
As for private versus nhs my private co asked if I would consider changing to NHS for a monetary amount… I am obviously costing them a lot maybe I will … to fund a holiday…? Make me feel better???
My onc keeps telling me that there are plenty of other things to try and he I think has taken on board that I would like to keep working and the quality of MYLIFE is very important
I am too far from the Marsdon what do they offer that you cant get elsewhere I assumed that the info was international for all the oncologists… maybe they have more trials?
Hi Kathryn
Please feel free to contact our helpline for a chat about your treatment options with one of our specialist nurses, the helpline number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Katie
Moderator
Breast Cancer Care
My instinct would be to have the MRI and then assess the situation.
The Marsden is the top level UK centre for cancer treatment and research, and it’s always worth a second opinion from them if you really want one.
Hi, Wisdens -
If your doctor is the same one as would look after you on the NHS, I’d be tempted to take the health insurer’s money and run! I don’t see the advantage in staying on private care. You can also switch and keep some private care in reserve for another day. The Marsden certainly does other trials in all aspects of treatment. That’s one reason to ask their opinion. They also know all the other trials going on in the country and attract top professionals.
As to distance from the Marsden, I live overseas and arranged a second opinion from them thru my oncologist here by mail. He had to send my medical history and current treatment and a request for the opinon. I sent an email explaining also what I was seeking and my priorities - i,e, QOL! So maybe distance is not a problem?
I totally agree on quality of life - my onc. now supports me in this and isn’t pressing chemo on me.
Katie - Also ask doc. about a PET scan. MRI doesn’t show metabolic changes or their degree and extent. MRI is cheaper and doesn’t use ionising radiation though.
Wishing you well,
Jenny
Thank you all so much for your replies. Have been away for the weekend improving my quality of life! I have an appointment with my oncologist tomorrow and an MRI on saturday. My oncologist works in the NHS so I would still see him and as I continue to work full time private appointments are convenient for me. He has always said that there are plenty of treatment options open and he feels that the management of the cancer is important but I am anxious to be clear about what is or isn’t active to cause the rise in the tumour markers. I am just desperately worried that I have gone in the space of a little over a year from someone with a good prognosis to someone with secondaries, one chemo and 2 aromatase inhibitors down.
I only live in Hertfordshire so the Marsden would not be a problem.
The other downside about private treatment is that as I never meet anyone else it can be quite isolating. Thank you all for sharing your experiences and advice
Best Wishes Kathryn
I agree with the isolation problem but I work where I have treatment - my area has a very good cancer charity and they have a good way to meet others with relaxation classes and chat, and coffee area the building is purpose built and you can pop in any time all the volunteers have been touched by cancer but I am sure you will find a local cancer charity and they will have a special breast cancer part and should be able to help with someone to talk to.
As you will see from the postings here that there are many people with secondaries doing really well I take a lot of positive thought from these although like you I am feeling somewhat down at the moment as I have been through so many chemos and hormone tabs etc and none are working … my onc is also positive and says there’s more to try?
How did your appt go ? Hope you feel more positive. Big hug…
Hi
Thanks for that, wisdens. I am to start Vinorebline and have a portacath inserted as my veins are so rubbish. So waiting for dates etc. I did get a lot of support from Breast Cancer Haven last time round but it is on the other side of London. On a positive note I did book a skiing holiday for Easter last night so something to look forward to!!
Would like to go to the Secondary Taskforce event but it is half term and we are off to Center Parcs!
Feel better knowing what is mapped out for the moment.
Thanks for all the support and hope everyone else is doing well
Best Wishes Kathryn
I’m halfway through the vinoralbine not too bad got tingly hands and feet dont feel sick whoopee!!!Also my hair is ok (growing from last chemo) just tired. Hope you have a good half term at Centre Parcs.