Last blog was about feeling like I was living in twilight zone of recurrence but no date for 2nd line chemo. History Stage 4 2007, 4 carbo/taxol debaulking surgery then 2 more carbo/taxol. Stable for 4 years with Ca 125 constant about 16 from original of 6500. Ca 125 starting to rise in June 2011 slowly then last one in August 2012 175. Ct Scan in October 2011 showed a new peritoneal met, which only increases from under half an inch to just over in scan Feb 2012. Now appointment this week, ct scan done in August 2012 quotes fluid in pouch of douglas( is this ascitis I ask myself) No mention of peritoneal met only other nodules near spleen and gallbladder with no increase in sze. Also noted is a wide neck anterior abdominal wall hernia which has never been mentioned before. As I am well ( SHO never asked just assumed I think) they are going to see me in two months and delay chemo yet again. Trying Tamoxifen, which I thought was anti-oestrogen for breast cancer. I am so confused, the clinic was an hour and half late and I was so relieved the scan showed no spread, the SHO said my PSA was rising ( Have I had a sex change), then asked me if I was still having periods!!!!! I am nearly 60 and besides which I have had TAH/BSO I couldn't wait to get out as quick as possible. It wasn't until I got home and read the report that I realised I don't get this at all. Please can anyone explain any of this, I used to be a medical secretary and a note summariser but I do not understand. If you read this Ruth please can you help.
You could give Ruth Payne a ring on 0845 371 0554 But better be quick xx
in reply to
Hi...I wondered if you meant stage four and not grade four...as grades only go up to three and is an indication of how fast growing the cancer is for instance grade one is slow growing... and grade three is fast growing...so the four might mean stage...you could have stage four but grade one...which then could mean it was advanced but slow growing...also you say they didn't mention the peritoneal mets maybe...this is because it has already been noted..for instance I have nodules that were present on my very first scan...they haven't gone away but they haven't mentioned them on later scans either...as they are historic.....your hernia could be a new development ( I have an incisional hernia) I asked my oncologist why on one scan they recorded three measurements...and then on the next scan they only recorded one measurement ...he said it was because they didn't have to write it all down so depended on the person doing it...I am sorry I can't be much help.. but hope this helps a little...
Oh my word. I've never been given my notes and I'm not sure I'd want them anyway. It would make me quake in my shoes though it's probably all standard technical talk and nothing to worry about.
Did you get in touch with anyone from Ovacome? If you haven't you could book an appointment with your GP to discuss and explain the whole thing. He might be more empathetic.
Sorry Ruth has been at a research conference today, so will not be back in the office till Weds.
I will try to help a bit!
First the CT - Well there are some bits there, but I hope you take some comfort from the fact that they are so slow growing. As mentioned above, Stage and grade are two totally different things. Stage is how far it has spread and grade is the aggressiveness (no matter where it is) For more details see our factsheet here
So if the docs are certain you have a recurrence (and a CT finding that disappears is a bit of a head scratcher) the obvious question is what to do next.
There was a really valuable and interesting piece of research done a few years ago by Gordon Rustin. Knowing that you are all intelligent and well read ladies, and not wanting to withhold information,the full report can be seen here. BUT PLEASE be aware that it contains the full on nasty statistics and I would urge you to please think very carefully if you really want to know all the survival data before clicking on the link! I will sumarise the key points for you so you don't need to look at the whole report,but for those wish to:
Dr Rustin had for a long time worried about the whole 'CA125 pschosis' whereby women lived from one appointment to the next worrying themselves silly about the next result, not being able to enjoy normal life as a consequence, whilst in fact no one actually knew for sure that jumping on a recurrence the moment the CA125 rose and starting chemo again the minute the cancer came back was of any benefit at all.
He designed a trial (Called OVO5) whereby he (well a computer) divided (randomized) women into two groups. Everyone had their CA125 taken, but in one group the result was shared with the clinician and the patient; in the other group the results were withheld until such time as the woman or clinician suspected a recurrence due to symptoms, then they were declared.
What the study learned was:
On average the CA125 went up 5 months before the woman reported symptoms BUT
that starting treatment when the raised CA125 confirmed a recurrence or waiting for treatment till the woman was symptomatic made no difference to survival. In other words there is no survival benefit to monitoring CA125 for recurrence and starting treatment straight away.
It seems counter-intuitive doesn't it. We all assume that the earlier you start treatment, then the more successful it will be, but that hasn't been borne out in the study. In fact one of the really bothersome things that many women report is that you have to start chemo again, when in fact you feel perfectly well, and could be spending your time getting on and enjoying holidays,sports, friends and family etc.
I suppose its a long winded way of saying, please don't feel the need to rush into any further chemo, and don't put yourself under any pressure to make decisions. If you feel well, the get on enjoying life knowing that at some point in the next few months you will need to face treatment again, but until then..
ou are right- Tamoxifen is a treatment for breast cancer, but about 20% of ovarian cancers have the same hormone dependency as breast cancer, so whilst it doesn't kill the cancer exactly, for 1 in 5 women there is a chance that Tamoxifen (or indeed another similar treatment called Letrozole) can hold it in check.
It sounds like the SHO need a flippin' good talking to. Please call your nurse specialist and tell them what happened. I have a good mind to anonymously use your post to illustrate what a bad consultation looks like! Hopefully you will see the consultant next time and there will be a portion of humble pie consumed somewhere in the hospital!
I hope this helps a bit and you have a good weekend.
Hi Northerngirl
What a horrible experience. The SHO sounds as if he was on a different planet when he was talking to you - not very reassuring. I just googled fluid in the pouch of douglas and it looks as though it can be quite normal and the cause for concern is when it gets infected - if you haven't already, have a look on wikipedia. Apparently women can also have PSA but goodness knows what he was talking about in this context. I have heard of women on other OVCA support sites who take tamoxifen.
I hope the horrible muddle will be resolved for you - as Annie says maybe your GP could help.
Hi northern girl... I read your question with interest and the answers especially from Louise... I am in a very similar position.... Being treated in slough berks.
I was grade 3 c in December 2011, had 3 rounds of chemo then surgery: total hysterectomy/ oophrectomy/ omentum/ partial rectum removed due to spread in pouch of Douglas and appendicectomy! Then 3 more rounds of chemo. Had a optimal de bulking ( so the experts say) as was put into PETROV trial which would not have been if not optimal. Not on trial any longer as randomised to IV access only and has severe reaction. ( my choice to withdraw)
I had a bad rib pain left side whilst on chemo, oncologist felt nerve pain from surgery... Well I needed reassurance and had full body scan... Whilst awaiting results my ca125 shot up from 128 post chemo to 800! Now.... I knew things active and on the move I could feel it... Burning, stabbing, niggling etc .. Oncologist trying to delay chemo as only off for 10 weeks has put me on tamoxifen.
MRI confirms my feelings and the smouldering fire is ignited again and I start chemo again this week. The oncologist did suggest trying tamoxifen for a few more weeks but this cancer is racing so I have opted for chemo to be followed immediately with ? Tamoxifen once the fire is dampened down again.
I hear what the research says and thank you Louise for the deeper explanation, but believe you me when you are feeling this going on inside and know you markers are very high ..... You know you are fighting for your life and to reduce spread and just need to get on with it
Not sure if this helps but you are SO not alone ms northern girl x remain positive as you can and face the fear xx. Gill
Thank you for your replies and to Louise for her help and explanation. Dear Midwife Gill thank you especially for your kind words and support. I do understand the theory and the reasoning behind the delay but I am starting to think are we saving money instead of life. The previous appointment the aforesaid SHO forgot to order my CT scan and then instead of 6 weeks I had to wait 11 weeks to be followed up. That was only because I rang the scan department to ask when my scan was as it seemed a longtime to be waiting. I have cherised the NHS, having worked in it for 30 years until my illness but I don't feel as confident as I once did about my treatment options.As Gill says this is our illness, our treatment and our lives. I have read up a bit more now and Tamoxifen can be given in cases of resistant disease which is hormone dependant but I am sensitive and had a long response to chemo for an advanced stage 4 with lung mets so why this before I have even been tried 2nd line. Do they know I am hormone dependant, nobody ever said or is this more money saving tactics trying something cheaper out first. Throw enough darts and some will stick at the dartboard. City Hospital Nottingham, anyone else have treatment/experience with them.
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