Its been quite a while since I posted on here so I will give you a brief history - my 84 year old MIL was diagnosed with BC in June 2009. She also has Alzheimer’s disease which makes things difficult in getting her proper history and her telling us or not telling us of changes in her health.
Anyway, she did not want an operation at the time of diagnosis and we supported this decision as did her BC specialist.She has been treated with tamoxifen from diagnosis until last month. At the last visit we were told her lump had increased in size from 1.5cm to 2.5cm and they changed her treatment to letrozole. Anyway, at this last visit (and before the change in treatment), she had been complaining for a couple of months, on and off, about headaches in the morning - she said she can feel pressure in her head at the sides. She also complained about her vision being “jumpy”. Now I did tell the specialist all about this but he said we should just change the meds to letrozole.
My MIL’s confusion is so much greater nowadays, and we think this is down to her Alzheimers, but then again could it be the cancer is spreading? And if it is spreading how will we know? The person who helps my MIl to shower thinks the lump is still increasing in size too. The next hospital appt is in 2 months time - should we ask for her to be seen again or just wait and see? Its very difficult as she would never cope with surgery, she is so frail, less than 7 stone and about 5’4". But we need to know that we are giving her the right treatment/pain relief etc.
Many thanks to you all and my prayers are with you.
This must be a very worrying time for you but you, I’m sure some of the users will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
The normal way to dx mets would be to investigate the area where symptoms occur with scans - generally CT scans for soft tissue (liver, lungs etc) and nuclear bone scans for bones. Sometimes an MRI is necessary if the position isn’t clear from other scans, and I suspect would be the first option for any suspicious activity in the brain. It maybe that she wouldn’t be able to tolerate an MRI or even CT scan - if her Alzheimer’s prevents her understanding the need to remain very still for a long period.
Of course it could be that her new symptoms are side effects from her drugs. It does sound as though you are in a very difficult situation. Does someone attend consultations with her? I don’t know what the legal position is with Alzheimer’s - whether decisions about her treatment are taken by her or by a next of kin. It does seem that someone in the family needs to know exactly what is happening. Good luck.
DX with BC April 2010, grade 3, TN, clear lymph nodes, had surgery, chemo and rads, finished treatment January this year.
Had first mammogram last week, getting results next Tuesday. How do doctors know it’s not spread to any other part of the body from a mammogram?
Do women have a CT scan or a MRI scan, blood tests as a matter of course?
I’m concerned that if the result is NED next week it may not be correct.
Hi Lesley I’m not 100 percent I’m right but I was dx 09 had chemo mx then rads fin feb 10 had mammogram 6 months later was all clear I never had any scans or blood test I don’t think they check unless a prob I was dx in march by accident with lung mets by having a chest x ray as I had pains not by onc I cld be wrong and someone with more exp will be along soon tc Laura
My wife and I are in a similar boat to Laura. She has one more FEC to go and then RADs and Tamox. We went to see the Onc yesterday to discuss the Rads procedure and I asked about follow up tests after rads etc. We were told that after 6 months my wife gets a mamogram, but having talked to some of the other ladies having chemo at the same time as my wife, some have mets but not necessarily a reoccurance in the breast, so how does a mamogram help? The Onc said that any bone scans/scans/x-rays/blood tests are only good for that one time they are done so if they are clear then it is not to say that it would be the following week etc. However, i would rather have the tests completed so if they are negative we have a base line of getting our lives back together without worrying about the not being totally sure.
My other concern is that every possible symptom from now on is going to set off alarm bells!!!
Is there a general medical concensus or is it that we just have to react to every possible symptom and hope for the best. I am worried that by the time the symptom has appeared the ball has starte rolling for a spread if the results come back positive.
Sorry to worry anyone else out there, but i am desperate to get to the bottom of it and my wife doesn’t like asking too many questions in case she hears something she doen’t want to know about.
Seems the only checks are mammograms or you find a symptom and get referred. Hence we all find ourselves becoming paranoid about every little symptom. Is it or isn’t it?
Incidentally I was told my yearly checks would be surgeon first year then alternately oncologist, surgeon for 5 years. This is what they think happens. The reality is surgeon one year after surgery - for me appt is Sept 2011.
Oncologist therefore has a two year wait - but from end of active treatment - last week for me. So next appt with him. May 2013, followed then Sept 13 by second visit to surgeon. So not yearly at all. In this case 20 months, then 4 months, then 20 months, then 4 months.
What happens in other areas?
Basically we have to try to forget it and live life, but be vigilant for symptoms.
Im afraid this is the uncertainty we have to learn to deal with. Yes the annual mammos do only look for cancer in the breast. I have been told that if i have any symptom for longer than 2 weeks to speak to my onc who may arrange scans. Other than that we are just left to get on with it and hope for the best. It is awful. Im always worrying if its spread and im over 3 years from dx. I only had the scans at dx but not since. Every ache and pain is so scary but then i usually find they go away within a few days and i calm down again.
Hi Richard
This is generally the norm for post-treatment. Some oncologists/surgeons favour scans with initial diagnosis but others, like mine, didn’t do any. My 5 year followup was 2 yearly mammograms rather than 1 yearly so even that differs. I was checked alternatively every 6 months by oncologist or surgeon but they do both understand all aspects of BC so this shouldn’t be a problem, by checked I mean breast and lymph nodes manually checked even if I’d not had a mammogram. All I can say to you and your wife is DO get on with your lives and try not to let BC overtake you. The first year after my diagnosis and treatment I did think about it all the time but after that I seemed to let it go and it didn’t dominate my life so much. As they say, get out there and smell the roses.
Nicky