More waiting!

[cesharpe]

After being referred for an urgent scan on the 28th July after seeing my gp and having a ca125 count of 295 and an abdominal mass, the scan, finally on the 19th July revealed a multilocular cyst on left ovary measuring 12x18cm. This seems pretty big to me! My gp referred me to the gynaecologist on 3rd July, before my scan but just received a letter saying they only added me to the wait list on 20th July. I've spoken with appointmnets at the hospital and they are hoping to get me in to see the gynaecologist/oncologist on the 7th August. I guess I'm just looking for reassurance that this is as fast as things move and wondering about others ca125 counts and mass size? I feel fine in every other way- no pain, no different bowel habits. I still get my period (have always had a short cycle) but it was only 3 weeks last time and very bright red blood. Sorry if thats too much info- am just stressing at the moment. I'm guessing they won't be able to tell if its cancer until they take a look but don't know if that will have to be a full laparotomy given the size of the cyst or whether they'll just do a biopsy first/ laparoscopy. I'm rambling, sorry. Any thoughts? x x

[Lyndy]

Hi Lovely.... it can take time to progress things but I would suggest you have a chat with GP... they may be able to shed more light or chase it for you xx

[Christie22]

Unfortunetly the waiting is so hard not knowing wanting to know and find out , I have my appointment tomorrow with gynae oncologist to report on my surgery it's been awful waiting iam just grateful the wait is nearly over . I feel for you and can empathise I hope your wait isn't too long use your GP it may be possible to bring things forward but as long as they sit inside the pathway time scales they often feel they are doing ok ,

Much love x

[CJR99 in reply to Christie22]

Christie I do hope tomorrow is a very good day for you as you so deserve...prayers will be said!xx

[CJR99]

My heart goes out to you I know everyone will feel totally united in the fact that the waiting is certainly one of the biggest challenges! I am so sorry that you're having to go through this. I do empathise big time...I'm still waiting on pathology reports myself and waiting for the surgery date or for results is always stressful for all...

I'm sure the GP can explain that CA125 levels can be raised for many different reasons and don't always signal poor news. They can have a 50% inaccuracy in pre-menopausal women hence it can be very confusing.

I do hope you are given some good news very soon.

Best wishes Clare x

[rppizio]

At least here in the States most of us wait 4 to 6 weeks before seeing the surgeon and then another month for the surgery. My number was 251. Both my ovaries were cancerous.. measuring 12 cm & the 2nd one 20 cm. It felt like I was carrying bricks inside my tummy. There was a third one that ruptured a week before the surgery, they said that one measured around 15 that was pressing on my bladder. Wishing you well.

[Sherrym]

Scans & coloscopy were v quick but had to wait almost a month for full surgery. Then 3 weeks after that to start chemo, Avastin 2nd chemo.

I guess surgery can't be rushed, you MUST have a gyno/onco surgeon & they are very few & far between.

Good luck

[Howick01]

I did not see gynae/oncologist until evening before op as everything was done through video conference.I only waited 6 weeks here in Scotland from first seeing GP.I think that is pretty good.I did have to travel 110 miles !!!!

Take care x

[antheamary]

At least everythings in place. Lets hope ca125 is a blip. Love your dog. I had a dalmatian. Let us know how you get in.

[Hidden]

You should only have to wait two weeks in the U.K. for a suspected cancer referral from gp following scan.

Your referral should be urgent, I would ask the gp why you are waiting so long. Hopefully all will be well.

I waited 2 weeks for an appointment but then 1 months for surgery due to surgeons holidays etc.

I could have opted for another surgeon but I wanted a particular one as his reputation was excellent. He was worth the wait.

Hope you get sorted quickly. X

[Hidden in reply to Hidden]

Hi there

Can I ask how you found out the reputation of your consultant/ surgeon? Xx

[Hidden in reply to Hidden]

Hi, I looked at my area and found out where specialised in gynaecology oncology, looked at who worked there then did a bit of digging on google.

I also found that it's recommended to have a surgeon who specialises in gynaecological oncology rather than a general surgeon as statistically this produces a higher rate of success, I think basically they get more stuff out if it is cancer and has spread.

As it turned out I was stage 3c, twenty odd samples were taken during surgery all tested positive for cancer. I was extremely grateful to the surgeon who did my operation he took 9 hours to get every visible bit out. I'm sure many women on this site have had similar experiences.

I actually think any of the surgeons at the centre I went to would have been brilliant. I've heard very positive things from friends I made during chemo.

X

[Hidden in reply to Hidden]

Thank you.... love to you and best of luck cxx

[Hidden]

cancerresearchuk.org/cancer...

[Marieloiuse]

Hi,

The waiting and wondering was one of the worst times. I was almost relieved when I knew what I was dealing with. Like you I had a massive (think nearly 20 cm across) cyst on my left ovary and very few symptoms. Like you they coudn't know til they went in! It did turn out to be malignant ( but contained) and here I'm still here nearly thirty years later. If I can offer any comfort I would say take it as a good sign that it's got so big and not given you hardly any bother. Mine too was multicellular with an excellent prognosis. No chemo, no radiotherapy. Wishing you all the best at this bewildering time. Catherine x