Hi , I am new here and wanting some advice, I was dx with inflammatory breast cancer on 7th Aug this year , my treatment plan is 6 Tac chemo ( i have just had my fourth)then mx then rads but unfortunaly when I had ct scan they found mets on my liver, so yesterday I went for MRI scan to see exactly what is there and how big ect. Onc did say that they looked small from ct scan, I’ve seen my breat consultant and she is pleased that chemo is working well on my breast but now liver mets have been dx she is doughtfull that mx will be done as anyone else been in this situation and had mx. My feeling is that I would like to have mx as then I’m only fighting the liver mets. I’m ER+ and HER2-
Hi Toffeepie, welcome to the BCC forums and I am sure that you will find support and shared experiences here very soon. Our helpliners are also on hand for you so please feel free to call and talk your concerns over, lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000
Here’s a link to the secondary support and information on this site which I hope you will find helpful:
breastcancercare.org.uk/secondaries
You may find it helpful to post in this ‘Liver mets’ thread which has been recently started:
forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Liver-mets-new-thread/td-p/886357
Take care
Lucy BCC
Hello Toffee, I’m sorry to hear your news. You will find lots of support here. I was diagnosed with bone mets the same time as I had my BC diagnosis, was quite a while ago and at that time it was not unusual not to have an operation if you had mets. I still have my primary, nearly twelve years on and it’s like a small scar tissue now but nowadays more are having a mastectomy. In your shoes I would see the chemo finished, get the results and then talk it over. If it feels important to you go for it, if necessary you can press for a second opinion if you feel you’re not being listened to. Good Luck, hope the chemo is working well. X
Hi,toffee,so sorry to hear your news. We are a friendly ,supportive bunch on here and always glad to help.I had double whammy diagnosis last June primary and bone mets.strongly ER+ I asked for a year to have mastectomy as like you I wanted primary gone but they always refused until primary started to grow huge again.I did get one in June this year as new cancer had grown in breast and spread to liver and lungs and was now triple negative . I felt if they had listened to me I would still have ER + bone mets and not spread .
If you want a mastectomy ,fight your corner and hopefully you won’t have an awkward hospital like mine.
Huge hugs,Helen xxxx
Hi toffee,
Sorry to hear your news but as helen and belinda have already said you can get a lot of help and advice on these threads. It’s so difficult when you feel you need to have the mx and they say not! You do have to stand up for yourself and be informed and organised. Make sure you get copies of all correspondence and scan results. There were a couple of things missed or rather my onc didn’t tell me that was on letters sent to my Gp.
Helen- that situation sounds a nightmare! Especially if you asked and they said no. You must be really angry
Hugs jo x
Welcome toffee, this is a very upbeat and friendly group where I’m sure you will get good advice. I am interested in the questions you have about surgical removal of a primary because I am in a similar position. Without boring everyone I have had many local recurrences after being clear for 14 years. I had lots of treatment following my first recurrence but a CT scan in July 2013 showed spread to a lymph node on the chest wall as well as my initial 3rd axillary recurrence.
I have been on the oral chemo, Capecitabine for 14 months and my chest wall node has all but cleared. However my axillary lump is still there and hasn’t reduced. I would like to have surgery but, from the surgical team charging in initially with removal ideas (surgery is difficult because I have already had 6+ operations) once the additional lymph node was found, chemo was the only option offered.
I have read up quite a lot on surgical removal of a primary when mets are found, several trials have been done and the results confused. In some trials, surgical removal was found to have a beneficial effect ( and who wants more cancer in their body than necessary?) but there is also some evidence that keeping the primary has a controlling effect on mets and makes them less aggressive. I’m no expert but these are points for discussion. Also surgery wouldn’t be done until you are recovered from chemo.
I haven’t asked my Oncs about surgery but would be interested in your follow-up. Best of luck with your chemo xx
It’s just some research I read, Belinda. If you google it you can read the trials, think they were a few years ago now but food for thought.
My son is a medical researcher, at the moment involved with cancer immunotherapy. Why doesn’t the body recognise cancer cells and activate our immune system? Apparently they can disguise themselves as friendly at cellular level, the little wotsits. Just find I can read stuff as long as its not about me!! It’s such a complicated disease, I don’t understand most of what he is doing but I’m proud of him.