I’ve written on this site before, including to the discussion thread “Anyone with Liver Secondaries”. Thing is, my Mum, who is an older lady (78 and full of life) has secondary BC that is triple negative. She had all the nodes (most of which were infected) removed from under one arm and she has infected nodes in her chest and a strip of BC on her liver.
A month ago, Mum finished 6 cycles of chemo, 3xFEC, 3xEpirubicin. When she finished, the clinic said they would “be in touch”. Well, being older people, and trusting that the medical profession “knows best”, my parents have not badgered the clinic to find out whether she should now go through a series of tests now to find out whether the chemo was effective or not. So currently, Mum is recovering from chemo but is not on any other kind of medication and we feel like she has been abandoned and forgotten.
I’ve read quite a lot of (rather depressing and disheartening) info about triple negative BC and that the only thing available is chemo. Can anybody give any more info about whether there are other treatments and whether we should be battering at the clinic’s door right now, rather than waiting? Can she have several rounds of chemo or is she only allowed the one round of treatment and that is all? The time factor is all-important.
Also, does the fact that Mum is triple negative mean that none of the info shared on the “Anyone with Liver Secondaries” discussion thread is relevant to her at all?
I’ve noticed from some of the discussions, that there is a great deal of focus on younger BC sufferers. I don’t wish to take anything away from younger women but BC is a dreadful thing for anybody to go through, regardless of age and though my Mum is 78, she’s still my Mum and is not ready to leave us and we are not ready to let her go.
It feels very lonely and scary at the moment and it’s not even me who is suffering from the disease.
Most of the people on here are younger because it is mainly younger women who turn to the internet.At 63 I am definitely one of the oldest on here.I am also triple neg.This is usually a young womans bc.Bear in mind that all cancers grow more slowly in older people.The only treatments not available to your mum are the hormonals and Herceptin.The clinic should scan to see if the chemo has reduced the bc on her liver and will work out future treatment,if any,based on that.I’d give it another couple of weeks then ring the clinic and ask about a scan.Good luck,horacex
I’m really sorry to hear about your mother and I completely sympathise with you and your feelings. Although my mother thankfully doesn’t have BC (I do though but it’s not triple negative it’s HER2+) we had a scare with her quite a few years back when she found a large lump and when she saw her GP she was told that it was most likely BC. When she told me (I’ll never forget that time) I went into a state of shock. I couldn’t function properly - this couldn’t be happening to my mum. Anyway she was treated privately and had the lump aspirated and then removed and thankfully it was not BC but we spent a week worrying tremendously about her. My dad was diagnosed with a rare type of leukaemia a few years back and he’s been treated and thankfully is ok now. I remember how I felt through all of that too and it was horrendous. Your parents are your parents and age is irrelevant.
Sorry to hear about your mum. I agree thatt there isn’t as much attention on older women with breast cancer as there should be. Yes a greater % of younger women are triple negative than are older women but I guess than in total numbers there are far more older women than younger women with it.
I am 58 and have ragional recurrence of breast cancer in my chest wall and clavicle nodes. Yes chemotherapy is the only treatment for triple negatives (or rather hormonals and herceptin no good. Triple negatives can have biophosphantes for bone cancer, radiotherapy and surgery where appropriate.)
I have had a lot of different chemotherapies: AC (similar to FEC); taxotere; capecitbine, vinorilbine, gemcitibine and carboplatin.
Your mother should be treated on the basis of her disease not her age ( a friend of mine’s mother in her late 70s recently had to argue with her PCT for herceptin…they wanted not to prescribe on bais of age…but she won the argument).
Do bear in mind that chemo is very tiring at any age (I am currently feeling wrecked) and your mum may well need some time to recover before more treatment is considered.
While triple negative bc is sometimes spoken of as being ‘very aggressive’ it is in fact a very diverse kind of disease…all triple negatives are a bit different…my own disease has behaved pretty unpredictably.
Sorry to hear about your mum and about how lonely and scared you are feeling. I do know what you mean about older people trusting the medical profession and not “badgering” in the same way as we might. My dad (who is 81) has prostate cancer and I find it very difficult at times. Partly because they are a distance away (Cumbria rather than Guildford) and because of my own poor health, but also because they approach the whole thing in a very different way from me and do not question at all what is happening and what is being offered.
Having said that, in your mother’s case, I would have thought it reasonable to know at least when she is going to be seen again and whether they will do scans/blood tests as part of this review. Has she had any contact with a Breast Care Nurse? In which case could you ring her? Or could you speak to her GP and see what the onc has reported back to him? What I have found with my parents is that it isn’t so much that they don’t want to know, it is much more that they don’t want to be chasing things up - don’t know if your mother is the same and would therefore be happy for you to be proactive on her behalf.
As Jane has said there are many chemo possibilities. My understanding though is that there is no advantage in following one immediately with another (plus it would be absolutely exhausting) provided the first has been successful. Hence, in my view, the need for a scan/blood tests. Would have thought it more normal to have a period of time between chemos when the cancer is still “in retreat” and therefore no need for more active treatment - and also time for your mum to recover a bit.
Think (as Horace says) the emphasis is on younger women purely because it tends to be younger women on the internet, which leads to the false impression that the older ladies are being marginalised. Don’t think anyone intends to do that.
I am sorry to hear what you and your mum is going through, you are right of course being older does not make the situation any easier. The other ladies have given sound advice so I have little to add.
Being triple negative I understand from my experience means that chemo and radiotherapy seem to be the only treatment and when the medical profession send you off after treatment it feels like being abandoned until your next visit.
This is where you may need to be proactive, contact the consultants secretary ( Idoubt if you can speak to the consultant direct) and ask for the reasons behind not getting a date for the next appointment. You should find that they will give you the reasons and maybe a date. It seems sometimes its a postcode lottery as to the amount of follow up care you receive.
I am lucky I am on a six monthly or self referral system, that is good but I have still had to get tough and phone up lots of dept to get what I am entitled to.
Go on what have you to lose make a few phone calls!
Thank you so much for the advice and putting some of my concerns into perspective. You are right about chemo being exhausting; Mum came through it pretty well on the whole but a month later, she is still exhausted, though was taking nutrient drinks prescribed by the GP, which helped to build her up no end.
Distance is a problem - I am in the Midlands and my parents are in the Home Counties. It is far worse to be dealing with this at a distance, though I see them as often as possible.
Carol has given me something to think about re offering to be proactive on their behalf. There are some possibilities here I think.
JaneRA - I have read some of your comments about triple negative and you are a very well-informed person on the subject - one of the few I feel.
I wish you all the best for your treatment and recovery and will continue to log into this site and see how everybody is getting on.
I agree JaneRA is very well informed, she has given me some very supportive advice in the past. There are a number of knowledgeable folks on this site so never be afraid of asking technical questions or for that matter no question is too silly we all need to know there is support.
Hi ladies, I’m back again - this time with a new angle to worry about. Mum finished her chemo about 7 weeks ago and the hospital said they would “be in touch”. Well, they hadn’t been in touch so my parents turned up at the onc unit to find out what was going on. The McMillan nurse asked a few questions and said she would have a word. The next day, they received a letter, asking Mum to come in for a consultation with her onc.
She had her appointment yesterday and I, my sister and brother are a bit stunned to say the least. Bearing in mind that she has had no repeat scans or anything following chemo, the onc told that “there is no disease” and that she should come in for a routine mammogram later in the year, that she should have an appointment with the surgeon who removed her lymph nodes in July and that she doesn’t have to see him, the onc until October!
Now, I am no expert in bc and most of what I have learned is by reading all your posts - but what I do know is that hardly any of you have been left high and dry like Mum and told that there is no disease without even making any checks to find out.
I know that consultants are demi-gods in the hospital and you have more chance of a meeting with the Queen than getting at one of them. How on earth are we to find out what is going on? My parents (who are both elderly) have taken his words on board joyfully and our concerns have reset their mood back to being miserable.
This indeed sounds very odd to say the least. Usually someone with secondary cancer would have a scan at the end of a course of chemo treatment. You are absolutley right that people are not just told ‘there is no disaese’ and sent off for several months.
I hope that your mother is not being treated like this because of her age but its certianly sounds ageist to me. Are you absolutley sure that this is what has happened…could it be that your mum is just not telling you exacly what has happened??
I think you have to tread very carefully to ensure that your mum is getting the treatment and care that she wants, beacuse every move you make on her behalf must be done with her agreement. If she and you want to find out more about what is going on then the hopsital PALs service (think its called that…its the place where you can take infromal…and more formal complaints) shoudl be able to suggest a way forward.
There is certinaly no way that the way your mum has been treated is standard practice after a diagnois of sceondary breast cancer in the liver.
Thanks for your comments. I don’t think my Mum and Dad are keeping anything back from us because I don’t think they could have feigned the joyful mood they were in after that appointment, but I do think that they don’t ask enough questions or enough of the right questions. They just accept everything they are told because the onc is the “expert”, especially as he has lots of prestigious qualifications after his name and is known as a big cheese in the cancer treatment world.
Mum has not been given any blood tests, apart from the routine tests she had while receiving chemo (which finished nearly 2 months ago). She has not had any scans since the first lot they did initially (some 7 months ago), to see if the bc had spread.
Although my Dad is there as support and as an extra pair of ears because Mum is quite deaf, he is so panicky about the whole thing, that I don’t think he fully concentrates on what is being said. If we challenge him afterwards with questions like “did you ask about the liver problem?” he becomes all bolshy and actually refuses to speak to us on the subject any more. We have interpreted this as “no, in fact, they didn’t ask a single thing about the liver problem and having not asked, they haven’t been told either”.
My sister, although concerned at what has been said, seems more concerned with sparing our parents’ feelings, rather than by causing them more worry by investigating what is going on. My view is that if Mum is left unmonitored and untreated, then ultimately, all of us are going to feel ripped to shreds.
Thanks for your advice on who to contact. Some good ideas here and I will definitely do something because although my siblings and I agree that the situation is unsatisfactory, they are not prepared to stick their necks out on this.