Please excuse my venting....grrrr..

Thanks Amanda. Yes I agree with what you are saying. I was told that the drug company that funded the clinical trial of Lapatinib (otherwise known as Tykerb) will fund my Herceptin this time around. As for chemo, I am also hoping this will be government funded too if I need it. I'm not sure what the difference is between a PET scan and a CT scan. I had a CT scan where they inject radioactive material, you go away for 2 hours then come back and have the scan which examines the chest area, abdomen and pelvis (all organs). The I had a bone scan that tests all bones including skull.

As you can imagine, I am now very skeptical of clinical trials. I dont think I will be jumping into any clinical trials any time soon! (unless of course the treatment options are very limited).

I will certainly be asking questions on Tuesday and sourcing my own scans and tests etc if I feel I need extra monitoring...then at least I will feel more in control and that I am doing everything I can!

Bye for now,

Celeste xx

 When i first met my oncologist in March this year , she told me I would be closley watched. When I went back in June this year second visit I asked her would she be doing blood tests and scans to see how I was going, was told no. I was shocked could not beleive it , said how can you tell if it comes back without testing,. Answer if your sick for more than 6-8 weeks go to your GP and get checked out, you will know something is not right. I left so upset , no faith in the medical system . I was only grade 2, no lymph nodes invoved.

Well I saw my GP I asked  for a full body scan this was 6 and a half mths since I found out I had breast cancer, and asked for blood marker test, also mamagram and ultrasound of other breast.. My GPdid all the tests, results came back all clear. Not only releived me of my fears, but if  it was to come back wanted to pick it up early.

I am taking more control and every 12mths will have a full bodyscan and every 3mths blood tets. You have to speak up and say what you want, you only have one life. I am stronger than I  was , when I first started this journey. Watch out any Drs that piss me off. I am now in control.

If your not happy , change your Dr to someone that will listen to you.

Yes there is something wrong with the monitoring regime. We need to all speak up and demand these tests.

 Good luck with you appointment next Tuesday, make a list what you want and demand they follow through. Big hugs Debbie.

 

Hi Celeste

It is completely reasonable to be angry.  I too asked all of these questions and had resolved to have a PET following treatment and pay for it (the government won't fund it).  It didn't matter - I ended up with mets to my skin that were finally biopsed and found to be cancerous so then I was offered the works which showed the cancer in my lungs (I was still receiving chemo at this stage).  

I have just started doing markers - they are only used in Stage 4 disease - they are not very accurate at predicting recurrence so that is why they are not used.  They can be helpful in monitoring metastatic disease.  I believe mine have never been raised though we are now monitoring them to see if any patterns emerge.  

I guess once there is spread there is spread - I was told that statistically the outcomes are not that different if it is found earlier or later - I don't know if this is true.  If it were not for the met on my skin I would be blissfully unaware that I had mets in my lungs currently and I wonder how many other women are out there like that too?  

It is definitely also a cost issue - is there any financial benefit to finding cancer spread earlier?  Probably not - therefore the government won't fund it.  Just as it won't fund drugs like neulasta and neupogen for stage 4 women despite them frequently becoming neutropenic from treatment (they would rather the dose be reduced than prevent the neutropenia on a higher dose).  There are many other cost issues that affect women with Stage 4 disease - the PBS doesn't cover many drug combinations.  If you are Her2 positive you must have herceptin or tykerb with a chemo for it to have most effect yet the government will not fund the combination of herceptin with other chemos in many cases.  Our oncologists are also not able to decide to use the latest cutting edge research (or their brains often) to determine what may work best for you individually as there may be no evidence base for it therefore the drugs are not funded - the only way to access is clinical trial or compassionate use through the drug companies.  

This probably makes you more angry and rightly so.  It isn't right.  The focus is on early detection of course which in many cases has a good 5 year outcome - but not for everyone - there is still no cure for this disease and all of us - EBC or ABC should be up there shouting out loud that this isn't right - that we should not still be dying of this disease.  It is good to celebrate survivorship but all survivors need to remain vocal and support the sisters with Stage 4 so that we are treated with the respect and top medical treatment that we can be.

People say it is worse in the US but at least there if you have insurance there seem to be a load more options than we have here where our insurance doesn't in most cases, cover medications.  

Use that anger Celeste!  I do think yearly PET scans are worthwhile for all BC women but until there is clinical evidence that there is benefit to it then the government isn't going to fund it.  As for the markers - they are just too unreliable to use standardly yet - here's to research that comes up with better screening methods.

Much love and light,

Amanda x