Update on my mum's PPC diagnosis

[sjg81]

Hi

I messaged about a week ago as my mum has been told she has PPC. She was sent to hospital about a month ago by her GP as her stomach was swollen (which we now know is ascites). She was sent for a CT scan and the following week she had to return to hospital as she could hardly breath. We were then told she had cancer and she was admitted to hospital and her stomach was drained a couple of days later. They could not get a biopsy so they tested the fluid.

She has then been since then that they think it is PPC rather than OC. She was then referred to a different hospital. We went there on Monday but she has been told that she has to have her stomach drained again as the build up is getting quite bad again but that they need to try and get another biopsy as they can not say for definite that the PPC is the primary cancer.

We have been told it be around 4 weeks before any chemo treatment starts (they have said that they think she will have 3 rounds of chemo, surgery if possible and then another 3 rounds of chemo). This just seems like a long time to wait but I'm not sure. I know they need to be certain but there seems to no urgency. Sorry for the message Sarah x

[Seasun36-uk]

Hi Sarah, reading between the lines, I think the delay is because of wanting to do another biopsy to obtain an accurate diagnosis for your Mum. I am pretty sure in saying that biopsy results take about 3 weeks, as the cells have to be grown in the laboratory & then different staining techniques are used to identify different cell types (quite complex). Mine seemed to take ages to come back. The choice of chemotherapy drugs is tailored to the type/s of cells in the tumour. Hope this helps. You could always double-check with your GP or Clinical Nurse Specialist.

Best of wishes, Linda xx

[Hidden]

Well I also feel they are being very careful and getting a second biopsy is the way to go now, they then tailor the drug to suit your Mum most.

[CharlotteSo_UK]

Hi Sarah,

Thanks for an update on your Mum. I know it does seem like there is no urgency but I agree with the ladies. In order to get the right treatment for your Mum, they really do need to understand what the primary cancer is - this is so important to tailor the treatment plan accordingly. Its so hard as you just want the answer right now, and to have that treatment plan in place. I'm pretty sure my Mum's results came back a few weeks after her debulking surgery, and chemo started a few weeks after that. The waiting game is just awful and there is nothing you can do to speed it up.

You should have a Clinical Nurse Specialist who will always be around to answer any questions you have - as are the ladies on this site.

Keep strong xx

[sjg81]

Hi everyone

Thank you for getting back to me...I know I'm probably just being a bit paranoid and I think it's the getting switched hospitals hasn't really helped either. They have said my mum doesn't have any tumours as such that they can see but widespread cancerous cells floating around (their words). My mum does have a Clinical Nurse Specialist but she is in the original hospital. Thank you once again for reasurring me and giving me great advice and I'm sorry for being such a pain.

Thank you again

Sarah xx

[Eriksendi]

I was diagnosed with stage 3 PPC last year. I too, like many others had to have my ascities drained and biopsies taken. This was all done at my local hospital. My results were back in a week. Once they were back and the fluid and biopsies confirmed pPC my care was transferred to a specialist cancer centre. I was lucky as my appointment was made for the next day. It’s is confusing, I too had a specialist nurse at the original hospital. I felt much more reassured once I had seen the oncologist at the cancer centre and I did have a new CNS and a different support network. Fast forward a year ...... definitely a bumpy ride but here now, and most definitely enjoying life. Sending warm wishes to you and your mum x.

[sjg81 in reply to Eriksendi]

Hi

Thank you for replying. I think it was just a bit of a knock because last friday at the original hospital they practically said that it was PPC and they were transferring my mum to a different but then on Monday they said they think it's PPC but want to try and get another biopsy.

I no they just need to be through to get the right treatment but I'm impatient haha. I think my mum is going to ring the CNS on Monday to see if there is any news on the date for draining/biopsy as shes starting to get uncomfortable again.

Thank you again for your help and support.

Sarah x

[Katiebairdie]

Hello Sarah, I was diagnosed with PPC four years ago. Like you I was very anxious that it took a long time before things started to happen. When you are first diagnosed you know nothing about what is happening and don’t know who to turn to. This site is wonderful, so much experience and sympathy. We also make fun of the damned disease and have some good laughs.

Easier said than done but try to put this to the back of your mind.

Best wishes and hugs.

K

[sjg81 in reply to Katiebairdie]

Hi Katie

Thank you for replying. I'am really impatient and like I said I think my mum was hoping that things were going to start moving on Monday (that's where I get it from haha). I think that's part of the problem because we are not sure what to expect or what to do.

I'm so pleased I found this site as I did consult Dr Google to start with (big mistake) but you have all been great and I can't thank you all enough for your support, help and advice.

Sarah x

[Naimish]

Dear Sarah, apologies if this sounds naive, but, why don't they do a Pet CT to understand the origins of the C?

Naimish

[sjg81]

Hi Naimish

Thank you for your message. To be honest I'm not sure...we are new to this and have never experienced it in our family before so we don't really know what to expect. They struggled the first time to get a biopsy but we don't know why she couldn't have another scan without so much ascites. Everything just seems to be up in the air at the moment.

Sarah x

[Emalou71]

I totally understand the anxiety with the delay, I had to wait 5 weeks from my first diagnosis to chemo starting. This was due to biopsy results, but I was told that the team looking after me needed all the facts and detail so they could ensure the right treatment. Once treatment got underway the ascities got under control and things did improve. I too have PPC.

Xx

[sjg81]

Hi

Thank you for replying. My mum was told over 3 weeks ago that she had cancer and we thought on Monday the ball would have started rolling but I think it's the waiting for an appointment to get the biopsy then it's going to be the waiting for the results for that.

My mum is going to have to have the ascites drained again soon because I don't think she will be able to wait until she gets her biopsy appointment (they were hoping to drain her and then do the biopsy the next day).

But just got to positive and keep on going. Thank you for you help

Sarah x