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What tests/monitoring do you have for metastatic disease?

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Member

Re: What tests/monitoring do you have for metastatic disease?

Thanks Catherine...I’ll certainly ask about the porta-cath.

Member

Re: What tests/monitoring do you have for metastatic disease?

Hi Jaygarden, 

  • I am also her2 positive and I have been on herceptin and perjeta for the last two years, for secondary bone mets. (Stable at the moment) I had a porta cath fitted in my chest and find this works miles better for me. My porta cath also enables me to have the contrast dye put through it for scans.
  • Kind regards
  • Catherine x
Member

Re: What tests/monitoring do you have for metastatic disease?

Hi Jaygarden,

I'm so sorry to hear your news, it must have been a terrible shock.

I think it's usual to re-scan after 3 or 4 cycles to check the treatment is working, and i would expect you would be scanned every 3-4 months after the treatment finishes, depending on what ongoing treatment you are on.

I was diagnosed with liver mets at my primary diagnosis and that was 11 years ago, so take heart! I too am HER positive and have benefited from herceptin. I'm still on a herceptin-based chemo (Kadcyla) now that I have some spread elsewhere.

Another thought occurred to me - I was offered a port-a-cath as soon as they found the liver met and it was clear I would be on herceptin or other treatments for some time. It would save all that messing about with cannulation and PICC lines, mine has been brilliant . Maybe you could ask whether you are eligible?

All the best with your current treatment and lets hope it's bashing those little 'uggers on the head

Take care

Jx

Member

Re: What tests/monitoring do you have for metastatic disease?

Hi Mermaid 007, many thanks for your reply. 

 

Ordinarily I would have another Ct at treatment 4, but because of the battle to get a canulla in (I have a PICC line currently for the chemo), as my previous FEC treatment really stuffed the veins up.....I think my Oncologist is hoping to save me the pain, and wait until after the Docetaxel is complete. 

 

Pleased to hear that you are stable and sending hugs that this continues/improves.

It’s a scary roller coaster ride to be on isn’t it.

Member

Re: What tests/monitoring do you have for metastatic disease?

Hello there,

Sorry you have had to join us but happy you found us.

with mets in your lungs and liver I would expect a ct scan every 3 to 4 months. When it was just in my bones it was an MRI every 6 months then when a spot appeared on my liver it was 3 months. Now I’m stable next one is 4 months.

so you are HER positive that means you should stay on herceptin for a long time and it really seems to be a miracle drug. Ladies are living years and years now with secondary breast cancer. I know how hard it is when you first find out but it does get a bit easier and this forum is a font of knowledge and support.

take care

x

Member

What tests/monitoring do you have for metastatic disease?

I had a shocking diagnosis of metastatic spread to my lungs, liver and possibly bones back in October, after turning up every year for my annual check and mammogram to remaining breast for 6 years, being told yes everything’s fine. I happened to go see my GP because of an on-going rhinitis based cough, and she arranged a chest x-ray, given my history, just so as I wouldn’t worry! Thank goodness she was thoughtful and thorough, otherwise when would this monster have shown up? I had no symptoms. I’m only 60 and this  has come as a huge shock, and confused retirement plans completely.

 

I’ve currently just completed treatment no 3 of 6 of Docetaxel, Herceptin, Perjeta, and the H and P will carry on for a year. Progress is being monitored by CA153 tumour marker blood test results and I will have another CT scan after treatment no 6.

 

I’m asking what happens going forward with testing and monitoring, what sort of scans, how often? So would appreciate forum members sharing their experiences, and feelings. Also what sort of follow up and after care do others get? I’m still hoping to resurrect the retirement plan and downsize/move house, but obviously location is going to be influenced by health care access, and what services are available at a local hospital or how far I would need to travel to get them.