First stages what to expect

[LittleMissMerit]

First few steps. We have been told without a biopsy that my Mother most probably has ovarian cancer. Everything seems to be taking forever. Appointments have been slow to come through (though staff have been amazing) and she is so uncomfortable with fluid build up around her middle, which is due to be drained when she has the biopsy. The Doctors have said Chemotherapy is next but how long will the biopsy results take? She has now got swollen ankles and feet and her womb feels heavy. Is this normal at this stage? I feel frustrated and helpless.

[Rachael47]

The first few weeks of diagnosis are horrible. Like you, I had anxious times waiting for appointments etc. The good news is that once the diagnosis is made things speed up. Are you in the UK? if so you should have been given the name of a MacMillan nurse. They are very helpfula nd can explain what is going on. Try not to google too much.

[LittleMissMerit in reply to Rachael47]

Yes she is in the Uk. She has been in touch with someone but is waiting to get a response.

[Lindaura]

Dear Miss Merit,

So sorry your mother is suffering such discomforts and that you must be so very worried about her.

Please relax.

You are in good hands now.

Although it always seems like forever before she can have that biopsy, it will happen.

The biopsy results come back quickly.

The fluid buildup is called ascites and almost all of us have had this.

It is extremely uncomfortable.

If the biopsy is more than a week away and your mother keeps swelling, she should be able to have that drained now.

You should have been assigned a nurse (CNS) who will be her liaison for hastening appointments or giving you test results, or just to ask nagging questions.

Call her and se if something can be done now.

The good news is that with Chemo, despite its horrendous reputation and it’s real and sometimes awful side effects, does kill the cancer.

As the cancer is destroyed, the Ascites disappears and that will help a lot.

If your mom has painful swollen legs, you need to be on the lookout for blood clots, which this cancer can cause to form.

Is your mom bedridden? Does she get breathless with the smallest activity? Like walking up one flight of stairs?

Can she eat and drink?

Check up in all these things and if you are concerned about her, perhaps she needs to be checked out in hospital.

Sorry to worry you further, but Ovarian Cancer causes a lot of symptoms and some can be dangerous.

The good news, is they can all be treated.

Best wishes,

Laura

[LittleMissMerit in reply to Lindaura]

Hi Lindaura I think it’s just her ankles and feet that are swollen, she has called the nurse and left a message so hopefully they will get back to her today. Although she already had this dragging type feeling she say it’s got worse. She isn’t bed ridden and can move around the house but very slowly but a few weeks ago was breathless on the rare occasion we did manage to get her out. She doesn’t feel like eating much but is trying to eat little and often. Yoghurt drinks have been prescribed so she is trying to drink three of those per day. She also has type 2 diabetes so has to be careful what she eats.

[Lindaura in reply to LittleMissMerit]

Thank you for your answer. Hopefully, your CNS will get back to you quickly.

When the Ascites fills the belly , she can also get fluid in the chest cavity, called a pleural effusion.

This can crush the lungs and cause breathing problems and it makes eating and drinking very difficult.

The Chemo will make this go away, too, but sometimes you can get so poorly from the cancer, with dehydration and lack of nutrients, it is better to get stabilised in hospital and even be hospitalised for the first chemo infusion.

Great that she is able to drink those protein drinks.

Keep up your great support and all will work out.

Best,

Laura

[LittleMissMerit in reply to Lindaura]

Thanks for your reply. Do you know if it’s likely that she will lose her hair (least of her worries I know but curious) or does it depend on what type of Cancer. She now has her appointment for the biopsy on Sunday oddly at an A&E hospital but no mention of the fluid drainage. How soon do these results come back? And are these given at the appointment with the surgeon Doctor or in another form.

[Lindaura in reply to LittleMissMerit]

Dear Missy,

When you get the diagnosis of Ovarian Cancer (the biopsy is to make certain where it originated), they usually give you the big guns.

That’s Carboplatin and Pacitaxol, otherwise known as Carbo/Taxol.

You always lose your hair with this regimen unless you wear a cold cap, which makes everything take longer and is very inconvenient.

Honestly, you get used to losing your hair and you know that the Chemo is really working and going all the way to the top of your head.

It happens in about week three.

The Biopsy results come back quickly. Your Oncologist gets the report and usually your case is discussed in a multidisciplinary team and your treatment is decided.

I think you should ask your CNS about getting your mom’s Ascites drained. It can be done at that same hospital.

Good luck on Sunday!

Laura

[Lyndy]

Hello, I had horrible ascities before my biopsy and drain. They did say if it got too much I should go to A and E - so this could be an option for your Mum xx

[LittleMissMerit in reply to Lyndy]

Can I ask...Did you have it drained just once.

[juliamillen]

Good luck with the draining of the ascites you will feel much better as soon as it is done. Less breathless and more comfortable

Julia

[LittleMissMerit in reply to juliamillen]

Thank you I hope it helps too. It’s that that’s getting her down the most.

[Flamingobeef18]

Hi

Sorry to hear you are all going through this very worrying time. As others have already said things do get easier once you have a clear treatment plan.

For myself events moved quicker than the hospital appointments. My symptoms which were very similar to your mums worsened whilst I was awaiting various investigations. My family insisted on taking me to A&E which turned out to be an excellent decision. Before I knew it I was admitted to the Gynecology ward where they worked hard to stable my condition. I was given pain relief, oxygen to help with the breathlessness and drainage plus a biopsy. I soon felt much better and my family were much happier knowing I was in the best place.

All the very best

Juliax

[Trathi]

Hi littleMissMerit, sorry to hear about your mum. The only thing I can say is everything moves slowly after they give you awful news. Appointments for scans, chemo, consultants and oncologist slow slow slow. It doesn’t help because you are hyper anxious after being told you have cancer and want answers which are not forthcoming. Once everything is sorted, things then run smoothly.

I think the biopsy results can take two weeks or more but times do vary.

I hope your mum gets sorted out soon and you get the information you need.

Sending you all lots of love 💕 hugs 🤗 and positivity xxx

[LittleMissMerit in reply to Trathi]

Thank you we are certainly feeling like things are dragging now. I’ve got quite angry today with trying to find out if they are going to do a fluid drain with the biopsy (as they said they would at the initial appointment). We are dealing with two separate trusts and neither trust is good to respond. Who ever said Cancer is a seven day week thing was talking utter tosh. So I’ve told my Mum Dad and Sister to say they aren’t leaving the building till it’s done. They’ve given her a two hour appointment surely a biopsy and blood test doesn’t take that long. Does it?

[Trathi in reply to LittleMissMerit]

I do hope they can give you some answers xx

[LittleMissMerit in reply to Trathi]

Thankfully after 8 phone calls they said they will drain her fluid.

[Trathi in reply to LittleMissMerit]

I am very pleased to hear they are going to drain her fluid, hopefully it will market her more comfortable. I also hope you will get answers now as well.

Sending you lots of love 💕 hugs 🤗 and positive thoughts. Xxx

[LittleMissMerit]

Update Mum in hospital. Thank God Oncology nurse listened to me and got her to come in this morning. Had biopsy. So far 4 and a half litres of fluid drained out of her (and she’s still draining!) Jesus! No wonder she didn’t have room to eat much. All that liquid sloshing about.