Mum is 7 weeks along from first app and still no treatment or op

[Holdingontohope]

Hi everyone, my mum has only had biopsy last week on two masses, we don't know results yet, consultant said he is 99% sure it's oc my mum looks 6 months pregnant, is this normal for anyone with co, I'm so scared for her, she is too, 7 weeks from first app, some people seem to be operated on within 3 weeks, any advice needed please x

[Whippit]

At least you've found us and we'll do our best to help you through a really difficult time.

I'm afraid ovarian cancer can present a lot of ascites so some women do look pregnant until they start having treatment.

When you say it's now 7 weeks since the first appointment is that 7 weeks from initial referral by a GP? That can be about the time it takes to start off the investigations or treatment.

At least now you've had a biopsy done you are taking positive steps to sort out what is going on and the best treatment for your mum. I wish we could take away the pain and worry you're suffering at the moment but I'm afraid it is just a matter of trying to keep a grip of things for your mum's sake and keep positive.

Please keep posting or ask questions. This is a great place to come for advice, friendship and support.

with love Annie xxx

[Holdingontohope in reply to Whippit]

Sorry I think I just posted underneath it rather than reply to your message Annie, x

[Holdingontohope]

Thank you so much for your reply, I feel so alone and I'm fed up with going through the Internet and comin across American sites, my mum has 4 children, 8 grandchildren, and is our rock, I'm the eldest but feel like a little kid at the moment, I'm trying to be positive and we have support but I'm so angry at the nhs, 7 weeks from first gp appointment with her symptoms, she had bloods ultra sound quite quick then nothing for 2 weeks, then consultant, ct and biopsy last Thursday, I just want them to start giving her something now, it doesn't help that she looks like she is pregnant, she's quite a small lady so I think it notices more, thank you again for your kind reply, xx

[Whippit in reply to Holdingontohope]

Oh dear, I wish I knew your name so this could be more personal. If it's any consolation at all your mum has been seen really quickly. Obviously most of us are not medically qualified in any way to have an opinion but I would say the doctors do have to go through a series of checks and examinations to ensure any treatment prescribed is going to be the right one for your mum.

Some women are given chemotherapy first and then surgery followed by more chemotherapy. For others it's done differently. The most important thing is to find out exactly what's going on and what is the best course of action.

Sending love to you, your mum and your family.

xxx Annie

[Holdingontohope in reply to Whippit]

Hi Annie, my names kerrie, I'm 34, I did try and sort a photo but cant seem to do it on stupid I pad lolxx

[Whippit in reply to Holdingontohope]

Hi Kerrie

It's good to know you better. Perhaps the problem of the photo is that it needs to be less than 2MB to upload into your profile.

You're more than welcome to join us - photo or no photo!

with love xx Annie

[ChrisH]

Sorry to hear about your Mum. It is quite common for people to have 3 or 4 chemos to try to shrink the tumours, an operation, then 3 or 4 more chemos. It depends on many things as to whether it is treated this way, or the operation done first. It's a good idea to ask the consultant why they recommend the order it which they do things, so you can really understand what's going on. I was done the 3 chemo, op, 3 chemo way as they said it would make the op easier in my case.

The swollen stomach is probably ascities, as Annie said. I get this, and every so often have to have it drained. Once the chemo starts to have an effect, the ascities usually stops building up, and then starts being absorbed naturally.

Love

Chris

[Holdingontohope in reply to ChrisH]

Thank you chris x

[Hidden]

Hi, I'm sorry you are so worried. Your mums team will probably decide to do a paracentisis (drain the fluid that has built up in the abdomen). I had this done before I started chemo. I too looked like I was about to give birth. I couldn't have a biopsy because there was too much fluid (13 litres). I had it done again 4wks later and once the chemo had kicked in it didn't need done again for about 8mths. I'm about to have the fluid drained again tomorrow.

Nothing ever moves quickly enough for us in the NHS. Most surgeons these days prefer to operate after 3/4 chemo cycles as it is hoped that the chemo will have reduced the size of the tumours and makes it easier to remove. Others do surgery 1st.

I do hope you won't have too much longer to wait to start whaterver treatment they decide on.

love Chris x

[Holdingontohope in reply to Hidden]

Thank you chris, all of these replies have made me feel much better, no one has mentioned draining and I know they do it as you said xx

[Hidden]

Hi

Have you been told when you can expect results from the biopsies and do you have a follow up appointment? It is very hard to be left "hanging" and I would think it is reasonable to know what sort of time frames you can expect.

Monique x

[Holdingontohope in reply to Hidden]

We may know more tomorrow after weekly oncology meeting, the nurse calls in the evening but I can't see how she is able to give all this info over the phone, I'm sure she will have to wait for another consultant appointment x

[Hidden]

Poor you, as well as your Mum, it is tough to feel so powerless on both sides I am so glad you found us. Tell us where you are geographically if you feel able - it may be that someone knows of local support you can call on too.

Lets take this a stage at a time: Push hard for the ascites to be sorted. One should not, I know, but I got it accelerated when I hammed up the shortage of breath. It was taking far too long, and it worked. Insist that it is done under sedation, it is a shock to the system and can be a very unpleasant first experience without that - although somehow you do get used to it; it sometimes has to be done a few times while a tumour or a big cyst is still there, because that is what stimulates the body to produce these high quantities of peritoneal fluid.

Your Mum will instantly feel heaps better, and that alone is hugely helpful in starting to feel one can cope - for a carer/supporter too, as your own panic can subside a bit.

Then you can focus on treatment -- as above, 7 weeks isn't abnormal, actually. You will find things accelerate a lot if there is a positive diagnosis. My doctor kept emphasising that a week here and there really doesn't make much difference (one may disagree, of course... But there's is not much one can do to speed the NHS)

Planning ahead: The next phase could be an op, if its a benign cyst, but if not then most likely to be carboplatin / paclitaxel ("taxol") given intravenously, on a 3 weekly cycle, for 3 cycles - this can vary a bit but that is the most common. There are several different types of tumour - if that us what it is - and it can influence the drug choice. There are some good info sheets here cancerresearchuk.org/cancer... but be aware these sound horrendous - we don't all get all the side effects! I got no nausea at all, for example...

That's all you can take in at this point. Please avoid surfing for statistics - they are no good for figuring any individual situation out, are very out of date always, and just panic one.

Keep posting and you can be sure we will all help and advise as much as we can. And we are pretty good for lifting the spirits too!

One tip: these posts are in the public domain by default. On the original write a blog form there is a button to just make it visible to members only - and you can edit this one too, to do that, if you want.

Love

Sue xxx

[Holdingontohope in reply to Hidden]

Thank you sue your reply was really helpful, I'm so glad I joined this site now, like you said if she looked a little more deflated then I think it would give her a boost xx ps in in hawkinge, kent, near dover xx

[doodoolatrice]

Hi Kerrie, So sorry to read your blog and we all understand how worried you must feel. My situation was that it took seven weeks from my initial Dr's appointment to having surgery. It seems like a lifetime I know and when you are dealing with the fear of Cancer then every minute seems like an hour. That is the way the system works and although it seemed like a long time I was kept informed every step of the way as to what would happen next so I never felt like I had been forgotten. One thing I did learn along the way was not to spend time looking at the interenet and statistics. Most of the statistics are out of date, the information can be misleading and your can misinterpret what you have read. This site is fantastic, the information is up to date and best of all you can share your worries with women who have been there and completely understand what your mum, you, and the rest of your family are going through. Take care and keep us posted. Love Kerry x

[Holdingontohope in reply to doodoolatrice]

Thank you Kerry, you have all been great, xx

[mummybear59]

Hi Kerrie,

So sorry for you and your mum to have this worry. The uncertainty and the waiting are one of the worst things i found. From my initial GP appointment to starting treatment chemotherapy was about 7 weeks but i had 3 drains in the 3 weeks before this!! I was huge however and very uncomfortable. They wont start treatment with chemotherapy (if that is what is needed) until they have the results of the biopsy as it will affect the choice of chemotherapy drug. I am surprised they haven't offered draining though as i felt much better after it and i'm sure your mum would too. When the nurse rings ask her if it is an option, it was my specialist nurse who arranged it for me. My biopsy was actually taken by the radiologist under ultrasound who put my drain in the 2nd time round.

My eldest daughter is 32 so i know how you must be feeling. She has however been a wonderful support to me and i am sure you will be for your mum too. I promise you once she starts treatment (and it wont be long if it is indeed OC) she will feel much better and therefore you will too. As others have said don't take too much attention of statistics on the internet, they are not only out of date but we are all individuals and nobody can tell how we will respond to the disease and the treatment. There are long term survivors on here and lots of support and advice as you have found!

Good luck with getting some answers very soon.

Take care.Sending a big hug.

MB.x

[Holdingontohope in reply to mummybear59]

Thank u, I honestly feel much more positive now, mum is one of these people that doesn't like to hassle anyone, I keep telling her about draining but I think she thinks I read too much on internet etc, I'm going to tell her about this site, thank you xx

[citrine]

Hi Kerrie

I do remember the 6 months pregnant look and that by itself is so demoralising. I couldn't fit into any of my clothes and had to borrow my husbands and do a raid on Tescos for cheap stuff in larger sizes. I had fluid drained off which helped to a certain extent and by the time I was ready for surgery - after 3 cycles of chemo - I was back to my normal size 6-8 where I've remained ever since. It was very uncomfortable and I felt so much better, physically and mentally once the bloating had gone.

I hope your mum will know what the tratment plan is soon and wish you both all the luck in the world.

Love & hugs

Mary xx

[Holdingontohope in reply to citrine]

Thank you Mary, you are right, if she looked a little less bloated I think she would feel much better in herself, she says people look down at her stomach all the time, she is quite petite normally, you have all been great xx