Please excuse my venting....grrrr..

Hi Amanda,

Wow. You will make a good advocate for BC . I didnt know that about PET scans. I will look into it more. I have been having groin pain but the bone scan didnt show anything. I am currently having chemo anyway but it is good to know for next time.

You are so right that there is so little evidence based decision making as research for met BC is just not out there and they are not collecting basic data about their treatment choices, outcomes, drugs used etc

Next year they are doing the 1st ever metastatic BC conference. I think it is in Switzerland. They raised issues that I had been asking and reseaching to no avail.

Well done you are doing a good job. You are also giving us valuable information to help other people with BC advocate for their health.

Regards

Hi Debbie,

We are the ones who know our body the best. I made a decision to have my staging CT done 6 weeks early as I felt something wasnt right. They found 2 liver tumors regrown and 1 new one.  The oncologist said I would not be in good way if had waited 6 weeks. Even initial diagnosis I kept requesting MRI on my shoulder(3 different doctors) but was told it was just a frozen shoulder. Then 6 weeks later mets confirmed in shoulder and paralysed arm. Round table discussion with all oncol and surgeons etc 'unusual case' was their response.

Regards

Anne Maree

Hi Tonya, yes there is something seriously wrong with the cancer screening process for BC. Personally I think it comes down to cost and an over-stretched health system that cant keep up. I was given many reasons yesterday why regular screening doesnt happen but you know what?..........I dont care! I will get my own screening done from now on if I feel what I'm being offered is inadequate! Whether it is a "waste of money", "waste of time", "unreliable", "over-doing it", "more radiation means more cancer risk"....I dont care! The patient should be in the driver's seat, demanding for tests and scans to be done. For example, if I am getting general blood work tests done, how hard is it to add in a cancer mark and liver function test on the same form?...seriously, how hard is that? I dont think the medical profession fully appreciate the anxiety that comes with a cancer diagnosis and the paralysing fear of recurrence. They should do this extra screening even just to appease that! You are right Tonya, we need to be more demanding and assertive....even the more placid and quiet/reserved people like me need to speak up. It is hard when you feel vulnerable and there is an incredible power imbalance between medical 'experts' and us...but it has to be done...our lives are at stake as you said.

Take care, Celeste xx

Yes you are right Leonie...there is a pile of stuff that just isn't right here and you are certainly entitled to vent like I have done. Cancer is a real SHIT...there's no other word for it! It's cruel and I wouldn't wish it on my worst enemy. I must share with you that when I had chemo, it took me over a year at least to get over the side effects....the aches and pains, fatigue etc etc. I felt 100 years old every day and longed for the 'old' enegetic me! I know what you mean by feeling like a guinea pig! I have felt like a guinea pig on the clinical trial, which didnt bother me until I heard the arm of the trial I was on was failing! You mentioned needing to know WHY your body is reacting the way it is.....my advice is to ask, ask and ask again. If you are not happy with the response ask someone else....your GP perhaps...or just keep asking and pin the busy oncologist down...refuse to leave the office until you get an explanation.

I think you are right about getting on with life and forgetting about BC issues...sometimes that is the best thing to do if you are able to...other times it is impossible to do that, and that just sucks!

Feel free to vent any time Leonie...it is therapeutic and we are all here to listen!

Take care, Celeste xx

Hi Tonya, When you had your first Breast Cancer what was the follow-up  like then ?  Did you have regular mammograms, ultra sounds.bone scans etc.?  Since your second cancer you have been poked at every three months but have they ever offered other testing to check how things are going inside your body?   It all seems so wrong for them not to be concerned.

Cheers Jo xx

PS: hows the new house, getting things in order and the way you want. Fun Fun Fun

I agree-I don't think a yearly mammogram is enough.I see my surgeon every 3 mths at the moment and she just prods my stomach and taps my back/lungs.You are not going to pick up small mets doing that.I think we should at least have a yearly chest xray and blood tests(markers and liver function).So if something small shows up then we can treat it before it's wide spread.Celeste,I don't blame you for being angry.You have to wonder if Hercepton would have been better - all these "what ifs"must be going through your mind and doing your head in. Write your long list of questions tonight.I feel angry for you and it seems we have to be more assertive and demanding cos our lives are at stake.My thoughts are with you for tomorrow.

                                    Tonya xx

Hi Debbie, good thinking about getting the test results and taking them to your oncologist. You will be prepared and ready!

I am also on Tamoxifen, and have had joint aches and pains, but apparently this isn't common for people who take it, hence my bone scan.( I actually thought joint aches and pains could be a side effect of Tamoxifen?). I did have aggressive chemo though that also causes joint aches and pains...some days I feel like I'm 100!

I also juice everyday and am feeling I have more energy and feel a lot healthier too. I juice veggies, fruit...whatever I can find...yum!

Will look for you on FB,

Celeste xx

Thank you Jo, I'm certainly hearing ya! Yes, it is a disgrace....there's something seriously wrong with follow-up monitoring only focussing on a woman's breasts, when the risk for distant breast cancer recurrence can be high! I believe it's all about money and an over-stretched health system in this country that needs a good shake-up!! I will be asking more questions this time around, even though I was brought up to respect those in authority and be obliging to those who 'know best'. When I am told "no" in relation to extra screening (or whatever), I will go to my GP and ask for his help. If he wont help me, I will find a doctor who will! Congratulations on getting your radio brought forward too!...the hard work paid off!

Take care, Celeste xx

Hi ladies,  I have just been googling to see what all the big words on my recent CT scan of my neck, chest, abdo mean. (I only got a copy of the report from my GP last Friday - test done 26-8-11)  Both my specialist surgeon(primary service provider) and my medical oncologist have said all is good with the testing.  Bloody hell when I have read the report there are a couple of things that I would like more explanation on.  !!!!  I feel so "out of my depth" trying to "see" if I should be worried or not.  I feel that I am a guinea pig not a real person to these people. (even though my GP and my specialist surgeon are lovely and I have a good rapport with them - they are JUST TOO BUSY)   Personally I think that the medical profession has lost it due to the numbers of cases.  It really is a "bandaid" approach.  I have now finished chemo over 4 months ago and still feel like "crap" - no energy and so lethargic with heaps of aches and pains.  I just need to know WHY then I would be okay.  But no-one will give me answers - just more pills which turn me into a zombie.  I have chosen to "keep" the pains and ditch the pills.  How many practitioners can one go to - Podiatrist, Massage therapists, Acupunturist, Herbal Chinese Man??  I keep this to myself but it is getting harder to avoid others seeing me "look like I have the body of an 85 year old".  My poor husband only really "sees" my pain during my "sleep" when I toss and turn all night.  I really don't know where to turn to OR just get out there and live it as much as I can all the time trying to forget about all the bc issues.    Sorry for venting but it appears that there is a real issue here for us all. XLeonie

Hello Debbie, yes you are so right. We need to be assertive in our treatment and stand up and shout to be heard! I will be asking for extra scans and tests to monitor my status if I think what I'm being offered is inadequate. If that means paying big bucks privately then I will find the money somehow!

Thanks for your reply Debbie, its good to know that I am not alone in feeling peeved off!

Hugs, Celeste xx