After 16 +weeks since surgery there have been many complications which meant the discussions regarding my biopsies: pathology report post surgery were the least of our worries.
However I now have my official diagnosis. ( Was originally PPC 3/4 )
Now I'm stage 4b high grade serous Fallopian tube.
Not sure it makes a lot of difference! But thought I'd share anyway!
Xxx
Sorry to hear that but at least you have the diagnosis at last.
Hey Jessica, I'm the same as you, high grade serous and Stage 4, don't know about the 'b' I've never been told, & to be fair I've not asked. I'm sort of of the opinion that ignorance is bliss at the moment. Rightly or wrongly I like being a bit in denial.
Hope everything else with you is okay, how much more chemo do you have, and hoping your wound is starting to finally heal.
Best wishes
Sarah xxx
Hi Sarah, how are you?
It's a tough place to be end of treatment time isn't it?
My son fortunately has his GCSE's to focus on. Otherwise I imagine he would be feeling quite lost.
My wound is now 2cm whoop! Finally getting there's. I've got a battery operated suction now so no longer carrying around the extra hand bag!
Chemo 6 hit me very hard. Still got fluid in both lungs. Xray next week.
Final chemo next Thursday! ( 7th )
I am dreading it after this one knocked me off my feet literally!
Felt emotional today, 1st time I've pottered in the garden in the sunshine since I was diagnosed early sept, feeling the sun on me evoked all sorts of memories of the 'old' me.
But I realised nothing physical has changed outside of my mind, the plants are still growing!!!
I'd love to find that 'denial' place. For me I want worst case scenario so that anything seems like a bonus !?!
Keep going, time heals the mind and your body will follow suit xxx
Lovely to hear your news, & glad your son has that distraction. Yes, sitting the sun gave me pause for thought... am trying to just take life step by step & moving forward cautiously. Hope your X-ray shows some kind of improvement the fluid. Has the chemo made it better or not. Always thinking of you x
How do you feel about your comfirmed diagnosis? I take it that everyone is sure this time ? Does your diagnosis offer different treatment opportunities?
You have been through so much , it's amazing how different our paths' are isn't it? That for me really confirms that it's our individual genetic make up that determines how our cancer develops etc.
I hope you are feeling better
Clare xx
I actually am not sure how I feel.
I'm becoming more angry now. That it wasn't picked up sooner. I guess this is a phase we all go through, particularly stage 3/4.
If only the dr had listened in February ......
still, very mindful this disease is so overwhelming we have little left for 'what ifs '
How are you doing Clare? Xx
Hi Jessica
Me also , stage 4 high grade serous . Hope you are beginning to feel better , are all healed and have finished treatment .
Love and best wishes Kim X
I'm almost there. Chemo was delayed 13 weeks due to complications of surgery.
One more to go ( hopefully )
Thank you Kim, hope you are in a good place mentally and physically xx
Hi Jessica, thank you for sharing. I am sure they have a plan of action that is important you try & forces on that.
We are all here for you so if you have any question don't hesitate to ask. Lots of heads are better than one. Take care Cindyxx
Thank you Cindy. The only change is that they have withdrawn Avastin and been referred to genetics?!
Hope you are in a good place Cindy xxx
Hi Jessica, sorry they have stopped your Avastin but the fact your seeing a genetics is a good thing. Did they explain why? If they test you for the BRAC gene & you are positive strangely there are more treatments they can offer you.
I am BRAC negatives but did join the 100,000 Genomes project it tests all your DNA to find a fault because there are quite a few different genes that are connected with oc & bc. I have oc & bc in my family. Maybe if you are interested in joining you could ask at your genetics.
I am not in a great place but thanks for asking. I am back on chemo my third line already had 29 treatments so far. The cancer has got silly again but no worse than the last 2 times I hope.
It's sounds as if you have been through a rough time with surgery & 13 weeks of delay of chemo.
I know how you feel about the GPs not picking your cancer up earlier. It happens to so many of us. I started complaining back in 2010 they found it March 2015. The GP didn't listen to me for 5 years. I was given 6 months to live have made 2 years. I feel very angry with my old GP but the fight is worth it stay in there. Take care Cindyxx
This is what annoys me, all the campaigns targeted at us knowing our symptoms.
What about the Drs listening to us! I'm so many cases they don't.
I'm sorry to hear you are back on treatment, if you are going to find some positive stories to help you they will be here.
So many supportive members, don't hesitate to reach out xxx
Hi Jessica, yes you are right there are lots of postive stories & the information from here helps me to ask questions to my onc's that I wouldn't of thought of. Often I find the onc's contradict each other which leaves me confused so I ask the lovely people on here for their opinion.
It's my third line in just 2 years being on here does keep me together more.
There are a lot of ladies on here that are grade 4 & doing well that's what you need to channel in to. Take care Cindyxx
Hi Jessica, I wanted to reply but felt lost for words , this disease is such a s..t. . I hope you are surrounded by love and support and you will be restarting treatment and getting yourself into remission. Hope the recovery from surgery is going ok AND YOU ARE GETTING THE CARE YOU DESERVE. Hope your sons revision and or exams are on track. Thinking of you. Chris.
Thank you Chris. I think the stressed out 16 year old doing his GCSE's is sort of helping ?!
Hope you are well currently xxx
Hi Jessica. I'm Fallopian Tube cereus 4b same as you, tho it has been OC and there has been faffing over 3c or 4... whatever it is still rubbish. I empathise over your son and know what you mean about having a focus of exams being a bit of a help. My younger son is doing A levels and having to revise and a clear direction has been a real help to him, especially as he has Asperger Syndrome so uncertainty is "cryptonite" to him.
I too had to stop taking Avastin but for me it was because my CA 125 kept going up, symptom free. I'm fine but wonder what is causing it to be over 1500 now. I'm waiting for the result of the BRCA gene testing.
I was told Fallopian tube cancer was rare but really treated the same as OC. We are a select group but I'm not sure what that really means in the end.
I too have been pottering in the garden trying to turn back the tide of 2 years' lack of attention. It's not looking too shabby after weeks of nipping in and doing what I can before I realise I'm not able to do anything like as much as I was before this diesease.... still it's good to get out when I can and I do love seeing everything growing.
Take care and keep strong.
Netti xx
Netti, interesting you were told Fallopian tube cancer is rarer I wonder if that's what makes it hard to diagnose hence it going to stage 4 before being diagnosed? It interests me as I puzzle all the time over mine. No sign of my ovaries being anything but normal during an ultrasound on 19 July at a top Harley street clinic, followed by diagnosis mid Oct? I still don't get it... xxx
I too had clear ultrasound. However I did have free fluid in pelvis. The endometrial lining was thickened. Also a so called polyp on gall bladder. Rectal bleeding. Anemia. I asked the dr outright in February if she thought it could be cancer. I also saw a gynaecologist in June!
When I'm better I will be looking into all of this, I need to know I've done everything and it's highlighted If something was missed for other woman.
I think this is all part of the process in accepting the illness. So don't be afraid to explore/ get answers if you need them to move forward xx
Hi Sarah, the cancer was found in my fallopian tube & I was told it would of been in there some time before coming out. I didn't know it was rarer than other oc ones.
I am 3c but on one of my forms they have graded me grade 4. I wounded if we wasn't told the grade would we feel & do any better?
As for not understanding why your ovaries were not effected but soon diagnosed which grade 4 oc would have me woundering too. It doesn't make sense at all !!!! Take care Cindyxx
That is strange, Sarah. No idea how that could have happened... have you gone back to Harley Street to ask about this anomalous result? Not sure what you'd get out of it, just wondering. I went to see a gynae consultant 15 months before my diagnosis and he "felt" it was not appropriate to go down the cancer route. I could spend the next months and or years fighting to get him to acknowledge his huge error of judgement and the consequences but I want to enjoy my life and be free of the stress so will just let it go.......................
Hope you're ok and. Or worrying too much, lovely.
Netti xxx
Hi Netti,
You sound just like me, that's what I do!! A little bit here and there -but isn't it a constant reminder of our disease that we have to overcome every day.
I look perfectly able to everyone else, friends just don't get it.
However, I understand why.
I hope your son gets the results he wants, huge praise to him for coping throughout your illness to.
Must be a fighter like his mum,
Take care, Jess xx
Good luck to your boy too. Xx
Just want to say what a brave lot you all are, uplifting, positive feel coming thru your posts. All the luck in the world Jessica. xx
Thank you, that means so much xxx
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