Long term OC survivor

[danforth1]

Hi everyone, I was reading a post online, a lady asking about long-term OC survivors... I was diagnosed with stage 3C Ovarian Cancer, BRCA1 related, in March 2011... I am still in remission... I also spoke with a lady, early on in my own process, that had stage 4 OC, with a reoccurrence after 3 years and has been in remission for 10 years after that... not that we have to live in hope, because I do believe where there is hope there is fear... but just knowing that it is not in our hands.... and knowing the process will unfold as it will....

[Lmc52]

Thank you for such a positive posting ,it’s lovely to hear after all the sadness.Like you l am 3c high grade ovarian cancer but not BRCA related but with multiple tumours.Just finished 6 cycles of taxol/carbon and avastin I go into hospital on Tuesday for Laparoscopy then if all ok full operation the Tuesday after then possible further chemo after.So you can imagine your positive post really cheered me up and hopefully after all this l will join you in remission and get on with life. Sometimes l think we all need reminding there is life after this rubbish disease .So you keep it up and carry on posting and thank you .

[Nancy222 in reply to Lmc52]

Yes! There is life after this disease and there's also life while we're in treatment. Good luck on Tuesday.

[Lmc52 in reply to Nancy222]

Thanks never had operations before so a little apprehensive but staying positive as every day is precious isn’t it. Anyway we are strong women and it doesn’t know what it’s taking on Teal Women power✊ 💚

[jools53 in reply to Lmc52]

Hi good luck, same as you had Surgery etc and as scary but got through it well! Did ask for glue rather then staples, scar is almost invisible! Take pain relief at all times , one day then I managed to stand and move slowly slowly god bless😘😘

[charlie12]

I was diagnosed in March 2010 and at that point this board was relatively new. There were only one or two posts a week. So it is highly likely that ladies diagnosed before then never used a board such as this. One of my friends , with the same diagnosis , has chosen not to. So because there aren’t masses of posts from long term survivors does not mean that they are not alive and very much kicking....as I am , mostly xxxx

[Nancy222 in reply to charlie12]

And I think sometimes people move on for a variety of reasons, life shifting, computer issues, etc.

Charlie12, may you continue to kick

[Nancy222]

I was diagnosed with low grade serous cancer the end of February, 2016 and am new enough to cancer that each day is a gift.

It lifts my heart when I read posts like yours, Danforth1.

[marold52]

I was diagnosed in 2012, full hysterectomy and appendectomy. Since had 3 different chemo. Just started 4th line. I’m feeling really well, been soo busy housework all afternoon. I feel as long as chemo keeps me going , I’m grateful it’s there to keep me alive. The 3rd chemo gave me two years without any problems, it’s just started to grow again pressing onto my bowel so pooing is difficult let’s hope it works again. Marg x

[Nancy222]

Hi Marg,

Nice to read that you've been doing well for so long. Hopefully they can manage this new growth of yours.

My sympathies on the bowel and pooing. My cancer invaded my bowel. Had 8" removed and it's as good as new. I tell you this because it's remarkable how things can work out.

Good luck.

[marold52 in reply to Nancy222]

Hi Nancy, thanks for reply. After my operation in 2012 Oct. I started chemo which was said to clear any possible bits left, carboplatin was used, it gave me 17 months cleanish. Back on carboplatin but after 12 weeks it was back, apparently became platinum resistant. 3rd one was caeylx this one quite hard to tolerate, but doable, was stopped at 5th dose, owing to very sore Hands and feet. After 2yrs free it’s growing again and pressing onto my bowel like I mentioned, they can’t operate I was told but reduce the size to help me with caeylx yet again at a lower dose, 6 treatments in all.

At this moment I’m really very well, was expecting to feel bad like last time but noticed toileting already easier. Lots of love to you Margaret x

Ps just turned 74yrs

[Nancy222 in reply to marold52]

Congrats on turning 74. And let's be frank, when toileting is easier, life feels just a tad better. Best wishes on all the treatments.

[Caroles1]

You are doing so well😀👍

I was diagnosed with a1c mucinous tumour in August 2014,debaulking and 6 months carbo /taxol and am still here.Even though I had a low diagnosis, I was still told I had about 2 weeks left because of my ascites.

Whatever your position, live life to the full, it’s not a rehearsal as they say

Love to you all xxx

[julia8163]

It is great to read such positive stories. It gives hope to the rest of us on treatment. Enjoy today and stay positive. I am stage 3 and on avastain since last July 2017.

[jools53 in reply to julia8163]

like to know how your doing on avastin?think im up to no12 and ongoing,scan due next week.

stage 3

[Jo-Jo1-UK]

So pleased to hear you have been in remission for so long and also know of someone else who has to. It really is encouraging to read positive news and gives us hope that we will do the same. Hope you continue to stay well for many more years to come, best wishes, Jo xx

[Emsymits]

Your story has really cheered me up after a fairly rubbishy day. I'm so happy to hear your story and I had never thought that perhaps there are other wonderfully well ladies who have drifted away from the forum as they may not need it any more...

I actually feel a tiny bit hopeful now 😀

Truly, thank you,

Em

X

[Nancy222 in reply to Emsymits]

Hopeful is good Em!

[citrine]

Hello Danforth

I was diagnosed with what is usually described in correspondence as “at least stage 3c” ovarian cancer in 2011 though a biopsy in September that year confirmed it as stage 4. I was also diagnosed with breast cancer in 2015 but they are not BRCA related. I’ve been very lucky as to date I have not suffered a recurrence.

I was helped by my oncologist not to focus entirely on the possibility of recurrence , something we can’t control but to get on with my life. This helped me not to waste time constantly looking over my shoulder and I think it applies whether we are on treatment or not.

[jools53 in reply to citrine]

omg fab news! what treatment you had?where in the country do you live?are you well at the moment?well done girlie xx

[citrine in reply to jools53]

Hi Jools.

I had three cycles of carboplatin/paclitaxel before surgery then had the total hysterectomy, removal of ovaries, lymph nodes, omentum and spleen, then another three cycles. I live in London and had my treatment there.

All the best xx

[citrine in reply to citrine]

PS, yes, all well at the moment xx

[Zena41 in reply to citrine]

Who did your surgery in London. ?? Are u high or low grade ? Xx

[citrine in reply to Zena41]

It was Mr Oram at Barts Hospital. I think he’s retired now.

It was high grade xx

[sandylight]

When I was first diagnosed with Stage 1V OC almost 19 years ago, I always looked for positive accounts of survival and I found quite few. On the 28th of this month I hope to be celebrating 19 years since being diagnosed with this disease. I've been very fortunate to have been in remission since finishing first line treatment in October 1999. At diagnosis I had massive pulmonary embolisms so was on blood thinners throughout treatment (3 chemo's prior to debulking surgery and 6 after). My Ca 125 was 9800 at diagnosis and at 15.2 after finishing treatment.

I think it's important to post the good stories because when one is first diagnosed, it is very scary and many Doctors tend to under emphasize the 'hope' aspect, so it's good that we do that here for each other.

[Nancy222 in reply to sandylight]

What a heartwarming story, Sandy! Thanks.

[Luchie]

What a lovely uplifting post. Please continue to post as its so lovely to hear. You are such an inspiration and gives us hope to this dreadful disease! Thank you so much. Xxxx

[Di16]

I was diagnosed with oc 10 years ago, although I have had recurrences. And I know a lady who told me last year she had been treated 27 years earlier for oc, & had no recurrences. Di

[tutti]

I was diagnosed in2000 with stage4 and virtually told that the outlook was grim.Eighteen years on,five recurrences,five major surgeries,chemo,radiotherapy etc and I’m still here though with two stomas,half a diaphragm and all the usual bits removed.I still have the same consultant and apparently I am the most remarkable survivor he has had.I have now been clear for five years though having health issues with the stomas and arthritis.Also my neuropathy has been very bad during this cold weather.Snow nearly gone and bins just emptied a week late so everything getting back to normal.Viv.

[greenpink in reply to tutti]

Fantastic tutti. I'm a stage 4, BRACA 2 positive survivor, diagnosed May 2012. Had three lines of chemotherapy and two major surgeries. On Olaparib now

[ladygooner-uk]

Hi ladies, I was diagnosed in Jan 2009 with stage 3a clear cell, had 2 relapses, but been clear 4 years now. I don't post a lot at present, but when the site first started, during my initial treatment stage or just after I think, I found it invaluable. I still check it regularly and find it really helpful.

Sue

[bluepeterella]

You have no idea how good this post is making me feel! I have high grade stage 3c diagnosed January of last year by a very gloomy surgeon who has stressed the 'no cure' part throughout. Reading research articles is almost as bad as they invariably begin with a paragraph full of doom-laden 'only *% survival' and similar phrases.

One year on I'm pleased to say I am full of beans and feeling great: long may it continue then!

[yo207]

Thank you for that post. It is the first of its kind that I have read. We all need some hope. Stay well. God Bless you.

[keeponkeepingon]

Great post! Thanks. x

[Purple-iris]

Thankyou for your great post , so uplifting and gives so many of us hope for the future . I was diagnosed stage4 inoperable June 2016 and didn’t think I would make it to Christmas but after successful chemo and surgery am now NED and just finished a year of Avastin .

Onwards and upwards ladies

Love Kim x 💜

[ZenaJ]

It's so good to hear that even with what we think is the worst doesn't necessarily have to be. I'm a big believer in a positive mind making a difference and I'm positive I've got years left otherwise why would I buy things and book holidays.

I'm stage 3C diagnosed in June 2013 BRCA 2 and am also in remission.

Best wishes, Zena x

[Hilsuk in reply to ZenaJ]

Me too Zena , exactly the same story 😊xx

[ZenaJ in reply to Hilsuk]

Great news x

[Zena41 in reply to Hilsuk]

Good to hear your still well I often think of u x

[Hilsuk in reply to Zena41]

Thanks Zena , hope you are still well too . Think the brca helps survival for some . Ive had prevetstive mastectomies since my unexpected brca diagnosis( must have inhertited it from my Dad , no obvious family history and my mum tested negative )xx

[Zena41 in reply to Hilsuk]

I would of done the same. X

Are u climbing still ?

We climbed hellvelyn for OC research funding last month raised £2k

[Hilsuk in reply to Zena41]

Wow , that’s fantastic ! Yes still doing lots of hill walking . Walked the Tour de Mont blanc 12 m ago and regularly walk in snowdonia . Love the lakes too , and climbed Hellvekkyn earlier this year in a gale - scary on the ridges as trying to blow us over 😆. Good luck xxx

[Zena41 in reply to Hilsuk]

Wow yes very scary. My hubby was scared going up as they had gales and it was 1 deg at the top and they were all dressed as women for Oc. Soo proud of them x

[bamboo89]

This is wonderful to read, thank you so much for posting such a positive story. Certainly, I'm left with the impression, having seen the oncologist, that what they want to do is chuck chemo at me because there's nothing else they can do, and there's no sense of hope, more a sort of resignation on their part. Admittedly, I've now got mostly non small cell neuroendocrine differentiation, and its very aggressive, but it is good to hear a positive story or three of survival.

Best wishes to all...

[Emsymits]

I think in my down moments I'm going to re read this post and the associated replies. I've managed to be fairly positive so far but have moments of 'I'm BRCA 1 so I'm doomed'! These posts have really, really helped and will hopefully do so in the future too.

Thank you ladies. Massive hugs to you all!

Em

x

[Emsymits]

Just realised I'm actually smiling to myself!

x

[greenpink]

Hi, danforth1, lovely to read your post. I was diagnosed Stage 4 in May 2012 and diagnosed BRACA 2 positive after first line chemotherapy and surgery. In May 2012, I heard about a woman, also Stage 4 who was a 10 years plus survivor. I have had 3 lines one chemotherapy and two major surgeries. Started taking Olaparib in January this year. Hope to keep going...

X

[greenpink in reply to greenpink]

I meant to say I've had three lines of chemotherapy ( paclitaxol and carboplatin for lines one and two and carboplatin and gemcitabine for line three) plus two major abdominal surgeries. I'm now on Olaparib x

[jools53]

Well put !god bless😘

[ellseybellsey]

I really do need this post at the moment it’s given me such an uplift, my heads been down since getting told I have a recurrence. My head is back up and telling myself you can get through this and have a fruitful life.

Ellsey xx

[kat98116]

Awesome post! Thanks to all the ladies who posted such wonderful encouragement. I just finished first line carbo/platinum (10 rounds over 10 months) and am awaiting my first baseline scan in about 4 weeks....scared! But CA125 is good. BUT....the real reason for this post is that yesterday I met a woman at my church who is a 38 year survivor of OC! Granted, I don't know the particulars, but boy I'm going to glom on to her! She is also a life coach and counselor and I'm considering an appointment to help restart my life. Keep those positive posts coming!

[Madmarilyn]

Wonderful to read this whole thread! Reckon the consultants in this world should prescribe it as essential reading when theybgive a diagnosis. Better than any treatment!

I have GCT but it appears not the slowgrowing kind, as it recurred really fast in various places, though all in pelvic cavity, which seems a bonus! Consultant appeared defeated before surgery and has used the 'incurable' word, but he has now referred my whole case for review to some expert Professor in a London hospital, saying my tumours this time look different, and they are considering various drugs, so definitely hopeful.

(Would love to hear from other GCT ladies in here too?)

I am now hoping to book a holiday as I had to cancel one recently to have the surgery. Let's all stick together and continue to inspire each other!

[Hilsuk in reply to Madmarilyn]

Same happened to me Madmarilyn !! . I had a gct 18 months before my second cancer diagnosis. Initially they thought the 2 nd cancer ( a high grade serous primary peritineal cancer ) it was the gct behaving incredibly aggressively. The histology showed it wasnt GCT , so I was suitable for chemotherapy, which worked wonders . The gct was 6 1/2 years ago and the ppc was 5 years ago , and neitger has recurred yet . Do hope similar happens for you . Definatly worth a second opinion at the Marsden.Good luck xxx

[Madmarilyn in reply to Hilsuk]

Thank you, that's good to hear. I am now undergoing chemo, but I believe it's still GCT - apparently it can respond to a mix of radical surgery & chemo. Here's hoping anyway! I do hope you remain in remission too.

[Hilsuk in reply to Madmarilyn]

Oh good luck , sure youll be in good hands at the Marsden . Are you on the uk GCT group ? X

[Madmarilyn in reply to Hilsuk]

Yes, it's really good, that and the worldwide one. Still under London Prof at the moment, though having chemo in Devon. Hoping for best but may decide to ask for referral to Marsden if for any reason things don't work out.

[Grace123]

Thanks so much for posting - & for everyone's responses - so inspiring!!! xxx Sundra

[criccieth]

Oh I'm so very thankful to find this forum and to read your positive post! Thank you so much xxxxx

I've just been diagnosed with Ovarian Cancer which has spread and have been pretty scared!

Feeling so much more hopeful now!

Any suggestions for nausea? Just had ascetes drained yesterday and now the nausea is back. Any suggestions would be so helpful.

So very glad to hear you are in remission! Thank you again for your post!

[Nancy222 in reply to criccieth]

I can't help with the nausea because I didn't experience it often. When I had it though, at the first opportunity I took the pill the oncologist prescribed. Can you contact your oncologist and get something?

[Sunfleury-UK]

Dx 1c (mucinous) in 2012, big op (with complications) and then 6x carboplatin which I finished in May 2013. Very fortunate to have NED since operation.

I do remember when i first joined the forum how much I appreciated hearing from people who had been living well for some time.... love & light, Sx

[Cnmart]

Love this thread! 😊 Thank you all for posting. Finished first line chemo at the end of January (still on Avastin) and have my first CT scan check up tomorrow, bit nervous if I'm honest, but I suppose that's normal. Xx

[January-2016-UK]

Thanks for posting. Great to hear.

[Zena41]

Thank you it was probably me searching high and low for long termers thank u so much we need hope xxx