Hi ladies,
I was wondering how often you can have ct scans on the NHS? I’m worried that if I don’t get them often enough then they may miss something in between. Feel paranoid about the future.
Hoping to complete this course of chemo very soon and have a bit of normality back with my family.
I was thinking about seeing an oncologist privately at the royal marsden, are any of you ladies out there going there at the moment, and would you recommend that I did this? Want to get the best possible treatment as being 38 with a loving husband and young daughter of 5, feel like I have to try any option. I’m triple negative too and scared of what the future holds. Even though I am a positive person, I’m beginning to doubt things at the moment. Xxxx
Morning Juls. How often do you have scans? I notice that you are nearly completeing your chemo, did your Onc offer you one after 3 cycles to see if it is working? or one at the end to see if it’s worked? Too many CT scans and bone scans aren’t that good for you, but how on earth his your onc going to know if the chemo has worked if they don’t have a peek at the area they were hoping to zap with the chemo???
You are going to have to be strong and assertive on your next visit and INSIST on some screening or…How will he’she know it’a worked??? which we all hope it has. But if you have not responded to that chemo he can then alter your treatment plan appropriately. Don’t be fobbed off with the old “blood results tell all” answer, I have mets in liver and bone and all the way through my tumour markers have been abou 11(!!) and all other bloods very normal-no indication of anything in me!!!
If he flatly refuses ask for a second opinion from his/her boss, that may get them moving…or ask for a HNS referral to The Marsdon, try not to shell out too much of your own cash - you need it for ice-cream money with your little girl!
Pm me if you wish, but there are some very knowledgable ladies out there with TN who may be able to give you a lot more info than me! Good luck,xxxxx
Hi Juls
I’m a 38 year old triple neg lady too, with secondaries in lungs and liver. I’m on my first load of treatment on the TNT study and I receive care under the NHS. My treatment is six cycles of Carboplatin with a scan at the half way point to see whether it’s working. I think it’s pretty standard to have scans every three months.
I asked for a second opinion at the Royal Marsden and I’m very glad that I did. It’s fairly standard practice and your current onc should have no problem with you requesting it, if they do, insist. I was actually told that I would have received exactly the same treatment under the Marsden which gave me peace of mind. I found the Marsden superb and I know of other triple neg ladies who are receiving treatment there and really rate it.
We have a lovely thread here called triple negative secondaries/recurrences, come and join us. We’re a friendly lot!
I was lurking on an American discussion board the other day and was reading posts from triple neg women who were still going strong after 4,5, 7 and 8 years, so there is hope for us.
Love Moondog xx
hi horsie 5050,
just like to share my good news with you today i have had the results of my ct scan, and my lung mets have gone all other organs ok, so now thet are thinking of just giving me the herceptin only and stopping chemo, but not sure when yet. i am so happppppppppyyyyyyyyyyyyyyyy, hope you are well and settled back in wales.
lollypop59 xxx
Hi lollypop,
That is brilliant news, I`m so pleased for you. Was it a 3 month scan?
How brilliant not to have chemo. Just hope my next scan in Sept is as good, my 3 month scan showed no change.
Once again so happy for you, go out and celebrate.
Pam.x
hi juls1974,
i have ct scans every three months for secondrey lung mets, just had one now, but i only think they doing scans every three months when you have secondreys, but all hospitals are different.
best wishes lorraine xx
hi pam170,
yes it was a three month scan got the results today, not sure when chemo is stopping but that the plan so all good and looking forward to next week moving house and cant wait.
take care lorraine xx
Lollypop BRILLIANT news xx
Thankyou lovely ladies for your emails back. I am on a tox free trial in mexcio and had my ct scan today and it shows the liver lesions have shrunk dramatically and the skin mets are regressing. I came out here as didnt want to be on traditional chemo again in the uk, as was ill before and my white count was always low. This tox free means that it protects the neutrophils within the white blood cells as well as bone marrow, enabling more chemo to be given more frequently and therefore giving a better result.
Ive been out here since being diagnosed with secondaries in march and am so homesick now! I know that i should keep on this trial, but not knowing how much longer i will be here is the hardest thing. I wish this trial was being done in the uk, but know it wont be there for a while.
I will insist on getting regular 3 monthly scans when i get back to the uk, and see if they can refer me to the marsden also for a 2nd opinion.
Hoping that everyone is doing ok with their treatment. Life is sucks sometimes. xxxxxxxxxxxx
would you pm me with more information regarding your trial in mexico thnks
hi there could you give more details regarding your trial in mexico thanks