Stage 4 ppc

[Rlenesue]

Hi ladies,

My oncologist told me on Wednesday that I'm stage 4 due to 1st reoccurence of PPC. Started chemo in January, had my 3rd of 6th dose on Wednesday. Honestly, I'm having a tough time with stage 4 prognosis and I fear the end is near. She said that since I'm braca positive I have a great chance for being NED and then I'm supposed to start the parp inhibitor. What if that doesn't work? Are there no other options? I honestly don't feel the chemo is helping, I'm on carbo/caelyx 1 dose every 4 weeks. I feel no different except for fatigue. Also, my breast reconstruction fix is a total mess. The chemo has opened up the sutures and is constantly draining causing a lot of pain and discomfort. This is the first time since getting my 1st cancer diagnosis almost 11 years ago that I feel helpless. It's like damned if I do and damned if I dont.

[lorraine71-Australia]

Hi Rlene, I just wan't to give you some encouragement there are ladies on this site who were diagnose stage 4 still doing well and as your own oncologist said you have a great chance for being NED. you sound like you have had the strength in the past I'm sure you will find it again,,take care chine up Lorraine xx

[Rlenesue in reply to lorraine71-Australia]

Thank you Lorraine for your reply. Just need to get my head wrapped around it... I guess I was never NED, even though scans were clear for 1 1/2 years. I should be grateful for the care I'm getting and the parp inhibitor I will qualify for, just when do you throw in the towel...

[lorraine71-Australia in reply to Rlenesue]

At first I said NEVER but we all have our limit so I think we will know when we had enough ..💙💙🎈🎆

[Rlenesue]

Thank you for your honesty. I just feel like I'm letting my children down.

[Rlenesue]

Hi Caddie.... at least were not alone in this. I am so depressed and once I thought I couldn't cry anymore, I go again. I just finished 3rd chemo of 6. Then onto olaparib for maintenance and hopefully will keep our mutated braca gene in check and stop producing cancer cells. Let's follow one another's progress and I'm trying to keep a stiff upper lip.

It's so weird to be stage 4 when this recurrence isn't a third of what the first stage 3 diagnosis was.

Keep in touch, caddie

[avid]

It is amazing what a couple of words can do. I have just read in my last letter from oncologist "palliative intent" in connection with my chemotherapy. I thought I was facing a recurrence not being written off. I am now wondering what the future holds.

[Di16 in reply to avid]

I was asked to sign a form when I started my first line chemo saying I realised all treatment was now palliative not curative. That was about 4 & a half years ago. Despite more treatment &surgery, I'm still here & not planning to go yet! Di

[Bettyxxx]

Hi there i have strong feelings about the word palliative i have told my team not to call me that (to my face anyway) i will remain under treatment or resting (like an actor darling 🤣)

To be fair palliative just means incurable which In reality we are with an OC diagnosis, the term sometimes has a negative connotation which it shouldnt do it should just be a time when all the services medical social and spiritual come together to support someone when they need it as the marie curie site says xx it does give some people other options such as benefits ir the option to retire early and they can be good.

When we walk into a results room we are physically the same as when we walk out we dont have something implanted whilst in there, so stage 3 or 4 makes no difference the treatment is still the same, i know we need to ‘grieve’ for the next bit of the journey but dust yourself off and take the control back is my advice

So my choice is to not be palliative and i dont think they can make me 😀

Ps i am currently (nearly) half way through chemo for 1st recurrence

[Nblisa in reply to Bettyxxx]

Bettyxxx you are cracking me up! I was diagnosed stage 4 PPC just over 5 years ago, and I told my oncologist that the stage 4 didn't count because I was diagnosed stage 4 due to it spreading to a lymph node near my heart. Otherwise I would have been stage 3. 😀

[Rlenesue]

Hi Betty, I love your spin on stage 3-4. You are right, of course. I just have to wrap my head around the number. Of course, since the very first diagnosis of cancer we all knew it was incurable. Close watch, yadayadayada..... It is what it is, a horrible disease which we can or have to live with throughout our journey.

Thank you.

[Rlenesue]

We definitely will keep in touch. Being braca1 positive lends a twist to the equation, to say the least. My ca125 is at 1272 as of february 14th. Was 677. Was 181 before that with clear scans. Just numbers.

Feel good