Waiting and more waiting.

Not sure if it is me being inpatient but.... it has been nearly 8 weeks since I first spoke to my doctor regarding my symptoms. I have seen GP 4 times, 5 different consultants and most recently a surgeon. I have had a CT scan lost count of how many blood tests, a Mammogram and a ultrasound. They all say yes you have ovarian cancer but nothing is being done! The MDT agreed that surgery would be best followed by Chemo, but when I met with my surgeon who was part of the MDT he was unsure of when I would be able to have surgery and said that if I have to wait plus 3 weeks then he wants to start chemo first instead, problem is I have not had any biopsy's done so they still do not know what type of cancer it is. I have reached the end of my tether, the sitting around waiting is unbearable!!

[Rachael47]

Really feel for you, the waiting around is awful. Sadly, this is the reality of the news stories about the NHS. It has been starved of funds - deliberately - and it will be a surprise to me if we don't end up with the US system. In which case people like me will just die!

[Hidden in reply to Rachael47]

I have used my husbands private medical insurance - absolute joke! This evening my pre-assessment appointment for tomorrow morning has been cancelled and they are doing it over the phone instead? Plus got a call to say I have an appointment on the 29th for a Biopsy then i guess it is chemo. But i am just guessing!! Glad to hear others on here treatment happened quickly.

[Juleswhee]

Hi, can I ask whereabouts you are , this waiting seems excessive , I didn’t wait longer than a week for any appointment and once I saw the oncologist I had chemo the next day . Here’s hoping that the delay is because it’s very early stage xx Big hug to you xxxJules xx

[Hidden in reply to Juleswhee]

Hi Jules - I live on the Kent/Surrey border. The oncologist said that he thought it hadn't spread from outside the ovaries, but I also have peritoneal deposits which I have read are difficult to treat, felt like the surgeon couldn't be bothered. The woman who went in to see the surgeon ahead of me came out to reception and was sent straight to pre assessment and surgery the very next day! Admittedly she did look very ill and I wish her all the best but how could they tell me there was a 3 week waiting list.......Privately!

[Juleswhee in reply to Hidden]

I am sorry you are having to wait , admittedly I was quite obviously ill( in a wheelchair due to breathlessness) but I feel the NHS in London moved very quickly for me , some of that is due to the fact I luckily was sent to the fantastic Prof F who you will see mentioned a lot on this forum . Praying for swift resolution for you xx Jules xxx

[Coldethyl]

That does seem an excessive wait - I waited about ten days for CT then a few days to see specialist team at another hospital - I then had surgery two weeks later - it may be that your surgeon feels neoadjuvant chemo might improve surgical outcome but he ought to give you date for that to start. It may be worth seeing your GP to get more info and then contact PALS at your hospital to complain

[Maus123]

Hi Lyn. Sending you a big virtual hug as you must be quite anxious right now. 8 weeks does seem too long a time before either chemo or surgery, if the scans suggest ovarian cancer.

That said... maybe I can address two spots of worry:

As opposed to suspected breast cancer, a biopsy isn't often part of the pre-treatment activity for ovarian tumours, since the real spread and cell type(s) can best be determined in the big 'debulking' surgery. So don't worry too much if that bit doesn't happen (although I just see you now have an appointment for a biopsy).

Whether you receive a few lots of chemo, then surgery, or surgery first then chemo... those are both common approaches for first line treatment of OC, and similarly effective. The decision is often dependent on the surgeons' assessment. If they think (based on the CT images) that they can operate right away, your journey starts with surgery. If it seems the tumours are too small, too spread etc for achieving a successful surgery at this moment, the MDT might recommend to start with chemo first in order to try and shrink the scope of possible disease first.

Discussing next steps over the phone seems needlessly crude, but might be preferable to waiting even longer? You'd want access to a gyn. oncologist/surgeon and for the actual treatment to start as soon as possible.

Also: Ideally the operation happens in a big cancer center of excellence (for gyn. cancers), rather than in a small regional hospital which may not experience many cases of OC in a given year. It can be a complex bit of surgery.

Keep your fighting gloves on. Hope your treatment starts soon so you can get back to your life afterwards. All the best. Maus

[Hidden in reply to Maus123]

Thank you Maus123 for your reply - I have emailed the surgeon that I saw with some questions that I would like answers to (or should I say his secretary) I just seem to clam up when I am at these appointments or I don't think of questions until hours after I have left. I know It will all happen eventually but sitting around doing nothing while the big C surges through me seems so wrong, I can't seem to find anything that distracts me long enough to get some peace.

[Harrygirl in reply to Hidden]

Hi, I am so sorry for the delay in your treatment, 8 weeks does seem too long; can your GP help you get answers as to the plan? Utilizing PALS sounds a good idea.

As far as your questions go, do you have someone who can go with you to appointments for support? Write your questions down before you go, make sure your support person is aware of them, and if you forget to ask, let them know they can ask on your behalf. You’re trying to sort out so much information, it can all get overwhelming at times. It helps to have another person digest info and advocate for you if needed by keeping the conversation with your doctors on track. I hope you get answers to your questions soon, wishing you all the best! Christine

[juliamillen]

This seems a long wait. Good luck with the biopsy and I hope things speed up

[sweetsusie]

I'm so sorry, lyn1987! I think it's horrible that they are keeping you waiting on this! I just want to wish you well....