Going from bad to worse

[Manchesterlady]

Latest diagnosis is stage three peritoneal cancer . Had a chest x ray and I have a nodual on my lung and have to go for a c t scan on Sunday . I am feeling suicidal now . Does this mean my cancer has spread through my body

[TinaB1]

Hello there ...

The lung is a very common place for Ovarian to go to.

The theory is that cancer cells only seed in the most receptive soil. It’s not common for Ovarian to leave the abdomen though it does often affect the pleural layer around the lung causing inflammation.

I have cells in my lung and have from the start though they’ve not yet caused me the same problems I’ve had with my abdomen.

It’s easy to let an imagination run wild.

It’s been suggested that you call the Ovacome helpline. There’ll be a nurse there in an hour.

The number is ..

0800 008 7054

I’ve found a lot of support on the other end of that phone. You don’t have to feel this way on your own.

Hugs ..

S xxx

[Yoshbosh]

Echoing what TinaB1 has said, please do phone the helpline for some guidance. Anna will be able to help make sense of what you have been told. It’s a really scary time, but hopefully you will begin to feel calmer once a plan is in place. Thinking of you xxx

[Eriksendi]

I have stage 3 primary peritoneal cancer. I was diagnosed last June 2017. I’ve had debulking surgery and 7 chemos and am doing well. I was not in a good place at diagnosis either I was petrified. I had complications along the way too and have a Stoma but it does get easier especially when you have a treatment plan. It is doable. Sending hugs x x

[Cropcrop]

I too echo what TinaB has to say, I think it’s really important for you to speak with somebody who had medical knowledge who can put things into perspective for you. Give Anna a call, you need some guidance and support. You still have our support but we’re not medically trained. Make that call love ❤️Xx Jane

[lorraine71-Australia]

Hi, TinaB1 has explained it well for you , try not to worry I know it's easier said then done but as soon as you have a treatment plain you will feel better..take care xx💙💙

[doodoolatrice]

Hang on in there because as others have said this doesn't mean it has spread throughout your body. I know the last few weeks have been absolute hell for you, but keep going, as once they give you a treatment plan, you will less like you're treading water and more in control. We've all felt like you do now but you must not give up. That inner strength of yours is just waiting to burst through, and it will. Keep talking to us as we're all here for you, every step of the way, love Kerry xx

[JanePW1965]

Hi Manchesterlady. My mum was diagnosed at the end of 2013 stage 3C. She has tumours in various places including near the aorta and pancreas. She finished third line chemo six months ago and her CA125 is now 10 and she's stable so it looks as though the latest chemo has shrunk the little tumours again. Her quality of life is good. Sending positive vibes. As Kerry says, keep talking to the ladies on here. They've helped me enormously whilst I've been going through the journey with mum. Jane X

[Neona]

A good idea to phone the Ovacome helpline. Waiting is just awful and you will feel much better when your treatment plan is in place- and remember that there are a lot of different treatments and clinical trials out there.

[OvacomeSupport Partner My Ovacome Team]

Dear Manchesterlady

Please do talk to someone about the despair you are feeling. As you'll see from the replies you've had already, this is one of the worse times, when you know what is wrong but you are waiting to be told what will be done to treat it. Once you have a treatment plan it takes away some of the unknown around what is happening. It's still very frightening but you will have a plan and your team are there alongside you.

As the other members have said, I am here if you want to talk, I'm in the office Monday-Friday 10am-5pm on 0800 008 7054. You can also ring your Clinical Nurse Specialist (CNS) and the Samaritans are open all the time and are on 116 123.

I mentioned in another reply to you about the Maggie's Centre in Manchester. In case you didn't see it, here are the details again: it's at The Christie (you don't have to be a patient at The Christie to use it) and they are there for support. You can drop-in any time during their opening hours and they also run specific services and sessions. They offer psychological support and counselling. Their website is here: maggiescentres.org/our-cent...

Lung nodules are quite common and most are not cancer. So depending on the size of the nodule and other factors around your health and medical history, your consultant may decide to keep an eye on it by monitoring with scans. Most do not cause symptoms and are picked up during scans for other health conditions, as yours was.

Hopefully the CT scan will give your consultants more information and they will be able to reassure you.

If it is cancer, I remember from your other posts that your planned treatment is chemotherapy and this is systemic - it goes throughout the body. So your consultants can monitor the effect of the chemotherapy on the nodule and plan further treatment if needed.

I'm sorry to give you so much information in one go but I hope this is helpful. Please do contact me either by telephone, private message on this forum or email [e-mail] if there is anything at all that you want to discuss, or even for a rant and a cry. It's what we're here for.

Best wishes

Anna

Ovacome Support Service Manager

[Manchesterlady in reply to OvacomeSupport]

Thank you so much for your reply , I feel so inadequate when I read how brave other ladies are . Going for my laperoscopy tomorrow , but I know the consultant wanted to do the full job . Fluctuate between being hopeful , to utter despair . Thank you so much . I will be on here tomorrow if that’s ok x

[OvacomeSupport Partner My Ovacome Team in reply to Manchesterlady]

Dear Manchesterlady

Thank you for your reply - of course you can post on here any time you want to, the forum is here for whenever you want to use it.

I would never tell you how to feel, but I would say that next time you are feeling inadequate, please do try to give yourself a break - be kind to yourself. Feeling inadequate doesn't mean you are. You are facing a disease that needs significant treatment. You're collecting information about it (on here, from your team and so on), you're attending appointments, you're having procedures like your laparoscopy, you're taking decisions about what you want your treatment to be. These are not inadequate or insignificant actions. You're doing what needs to be done, all while feeling really scared. You are not inadequate.

I hope the laparoscopy goes well. Do get in touch with me, any of the organisations I mentioned, and the forum whenever you need some support.

Best wishes

Anna

[Mptelesca]

Hello, Manchesterlady. I had stage 3 in 2015. About a year ago, I felt pain right below both lungs. I panicked and went to Yale to seek some answers. They took a CATSCAN and said there was nothing wrong. They noticed a nodule in my lungs and said that could have been there for a while, but, nothing to worry about. They say we all have non-cancerous nodules in our lungs.

That was enough to settle my nerves. Trust me, I was panic stricken when I felt the pain. I guess everything we feel will always be met with panic. I am sure that the hotline will help ease your mind. Wishing you the very best.!

[Manchesterlady in reply to Mptelesca]

Thank you , I find everything about this scary. I hope you are doing well x

[Mptelesca]

Yes, it is very scary. Today I am going for blood work and then Thursday for chemo.

I get myself so worked up and let my imagination run wild. I build up a list of questions for the doctors and then when I get there, I feel I am being petty. The question I want to ask the most, I won't because I know they do not have the answer to. Will I ever get rid of this OV?

The answer in my heart is no. Until I got to this site and felt the positive energy in dealing with this pain in the A$$ disease, gets me through knowing that we are all living with it and will overcome.

Sending all positive energy and love your way!

Marisa

[Manchesterlady in reply to Mptelesca]

Sending love and positive thoughts right back to you. I think they just can’t give you the answers , because they just don’t know. And we are all unique, and this is the hardest part . I will be 75 in June , and just wonder what the time I have left is going to be like .spent the early hour of this morning planning my funeral !

Hope all goes well for you . Is this your first lot of chemo ? X

[Mptelesca]

Thank you for your positive thoughts and love! I had to look up the perionatal word. This is my second lot of chemo. First was in 2015. Ascites encompassed my abdoman to the point where they had to drain it from me as it was pressing up againgst my lungs and I couldn't breathe.

This is my second lot. 3 chemo of 6. I am having a catscan after the 3rd. I was told yesterday that the FDA here in the states approved a chemo pill a month ago. We shall see.

It's fine to plan your funeral, but, don't be surprised if you won't be attending it for a while! You got alot of fight, life and hope in you. As long as these new treatments are coming in and we are all here to talk about it...don't be making any plans for anytime soon.

Hang in there, love! Let me know how it's going.

Love,

Marisa

[Rlenesue]

Try not to worry or let your imagination run wild. I had ppc, stage 3 and remained in remission for a year and a half. As far as the nodule is concerned, try to stay calm and wait for ct scan...