From Borderline to Stage 4 within a year with n... - My Ovacome

My Ovacome

17,596 members19,875 posts

From Borderline to Stage 4 within a year with no outward signs.

Tess profile image
Tess
23 Replies

Hi, this my story so far. In January 2010 I found a lump which transpired to be an ovarian cyst that was successfully removed. The biopsy came back showing borderline ovarian tumor and I was told that I would not need any chemotherapy but would be closely monitored. After my first 3 month check I was told that I didn't need to be seen for another 6 months. At the six month check my blood results were raised and was given an appointment for a PET CT scan. The results came back with the bombshell of three tumors. In July this year I had major debulking surgery with tumors removed from my liver, bowel and peritoneum. After some post-op complications I had a pre-chemo scan which had highlighted two shadows one near my kidney and one on my liver. Have now had three out of six chemo sessions and am waiting the results of my mid term scan.

I have written this because I have only just plucked up courage enough to look at statistics and as its stage 4 its doesn't look good. Not feeling great and could do with some support. Thanks for reading.

Written by
Tess profile image
Tess
To view profiles and participate in discussions please or .
Read more about...
23 Replies
BusyLizzie profile image
BusyLizzie

Hi Tess,

Just wanted to let you know you are not alone with your hopes and fears. I am trying to live with pretty well the same prognosis but there are some ladies on this group which go from one chemo to another with a good quality of life. As they say, it isn't over until the fat lady sings. So I keep everything crossed for you that your mid term scan shows things are being controlled. Please let us know.

Love Lizzie

X

Tess profile image
Tess in reply to BusyLizzie

Thanks Lizzie,

It is good to hear from others in the same boat. I will post the results of my scan when we get them.

Love Tess x

SandyL profile image
SandyL

Hi Tess,

Yes, it's a bit scary when one reads the statistics for stage 4 survival. I'd just like to say one thing .... "you are not a statistic." Just keep telling yourself that you're going to beat the odds and believe it with your heart and soul.

I was diagnosed with Stage 4 Ovarian Cancer in April 1999 - yes, that's over 12 years ago, and I'm still here, kicking and in remission since completing first-line treatment.

Keep in touch and let us know how you do after your mid-term scan.

Take care ...

Sandy.

Tess profile image
Tess in reply to SandyL

Wow Sandy 12 years is amazing and just what I needed to hear right now. I will let you know results when I get them.

Love

Tess x

Hi Tess,

Sorry to read of your experiences. I sounds as if there was an inacurate diagnosis at the first operation, and you have been treated less exactly as a result. I think the diagnosis of o.c., in all it's various forms, is not an exact or simple thing, and some cancers will evolve peculiarly.

Ok, you can only start from where you are. Don't be beguiled by statistics; they are gross generalisations from inexact records and massively out of date. I also have a ghastly prognosis statistically BUT each case is unique; and you are the only person who can treat your own cancer. So; find the diet, and lifestyle that addresses the things that caused and aggravated YOUR cancer, and make the neccesary changes, and find someone to talk through your fears with, and turn them into motivations. Weigh up the treatments you are offered, and pick the ones that are best for you, in consultation with your doctors.

Become informed and feel powerful about your treatment, and (who knows) you might even find yourself in remission against all the odds!

I do hope so.

Very best wishes,

Isadora.

Tess profile image
Tess in reply to

Hi Isadora,

Thanks for replying and giving me support, it really helps.

Best wishes to you too

Tess x

Heffmeister profile image
Heffmeister

Gosh I could of almost written your post! My "borderline" cancer 1c diagnosised in April 2010 morphed into invasive cancer graded 3c 16 months later. I had a total hysterectomy but no chemo- the hysterectomy was a really hard decision because I wanted more children and I was only 32 at the time but I belived it would safe guard me against reoccurences.

I had debulking surgery done this August which removed 90% of the new tumors off my bowel, peritoneum, diagram etc but there was an inoperable sites on the liver and spots on the spleen. They now believe that my original tumor might not have been borderline after all. I have entered a drugs trail for mucinous cancer (what subtype is your disease?) and am have also done 3 treatments out of 6 and had my scan last wednesday but have no results yet.

Can I add you as a friend on her? I find it hard to talk to my family. My mum is more scared than me. I have two little girls aged 6 and 4 some days just looking at them makes me cry but they are a very good reason for me to fight this disease with everything that can be thrown at it! Once you've got over the statisitics it's important to come out fighting and keep positive.

Good luck x

Claire

Tess profile image
Tess in reply to Heffmeister

Hi Claire,

Thanks for your reply, I can't believe that your story is so similar to mine! It is really hard to get your head round how things can have developed so quickly. I was 49 when diagnosed in 2010 and have a 14 year old son, and know exactly what you mean when you say just looking at your children makes you cry, I feel the same. Please do add me as a friend will be good to talk again.

Take care

Tess x

ScardyCat40 profile image
ScardyCat40

Hi Tess,

When I had a laparoscopy they found some borderline cells on the surface of my right ovary but they also found some high grade cells in a tumour on my peritoneum so I had a laparotomy and they found a whole spectrum of cancers from borderline, low grade and high grade. I was diagnosed with Stage IV cancer because they found cancer cells in my chest and also on some scar tissue around my belly button.

I've had 5 rounds of carboplatin but my CA125 started to go up again after 2 cycles. I had a CT Scan last Thursday and I'm seeing the consultant this Thursday for the results and I'm scared so I completely understand how you feel.

Tess profile image
Tess in reply to ScardyCat40

Hi there,

Thanks for sharing your experience with me, please let me know how your scan goes. Will be thinking of you. Sending you good luck for Thursday x

Tess x

ScardyCat40 profile image
ScardyCat40 in reply to Tess

Thanks for starting this thread I've been feeling down since I last saw my consultant a month ago and struggling a bit. Now I don't feel so alone and I feel encouraged by some of the responses. There is a book that Isodora often refers to that is very positive and talks about ways to beast statistics and make sure you are in that 5%

bosue profile image
bosue

Hi Tess,We all get scared specially with statistics,which I dont bother to read anymore, if you read back on lots of posts on this site lots of the women have been in remission for a long time, I've just finished chemo and waiting for a scan. Hope this site helps you as much as it has helped me, it gave me a life line. Keep us informed Love Sue x

Hi Tess

I too was diagnosed with stage 4 April 2010 aged 59 years with tumours on bowel and liver. Had radical surgery and 6 months of chemo and now in remission. I also was scared (and still am some days) when reading the statitics, but as everyone has reiterated on here, it is only a statistic. There are several ladies on this site who have gone way past the 5 year survival rate and when I am down I read their posts and pray that I am one of them. Life is too good to give up. Keep positive.

Love Chris x x

charlie12 profile image
charlie12

Hi Tess

I am so terribly sorry about your news. But please, please please do not take too much notice of the statistics, as they must surely be way out of date. The last few years have seen so many changes in healthcare, in terms of diagnoses, imaging, drug treatment, surgical techniques that these figures cannot be taken in isolation. Many relate to much much older ladies, my aunt for example who was diagnosed with this disease at 86.

I am about the same age and also had a borderline tumour removed in January 2010.I was told that annual follow up was fine and have really struggled to get more frequent appointments despite having ongoing pain. So you sharing your experience is really helpful, thank you so much.

I hope very very much that you get a good report from your scan and that the three next chemo doses are not too bad. Try to hang on in there and take care.

Love

Charlie xxx

Tess profile image
Tess in reply to charlie12

Thanks for your support Charlie, it really helps, and the news yesterday that cancer survival rates are improving was also a boost.

Take care

Tess x

wendydee profile image
wendydee

Hi Tess, nothing to add really, except my good wishes for all of you wonderful women who are fighting the good fight. Keep positive (type staying positive into the search box for more hints) and rest assured that so many of us who have had this diagnosis are still here and still keeping everything crossed for you all

Love, Wendy xx

Hello there,

I was diagnosed Grade 4 with lung mets in February 2007. I was horrified and terrified when I saw the stats, but as eveyone has said we are all individuals and there are more of us than still alive and kicking than first appears. I have had no further treatment since 2004. My thoughts are with you and hope my experience helps you.

Sorry, stupid me, no treatment since 2007. My husband always said my brain dropped out with my hair. Hair grew back but no brain.

in reply to

YEH !!

Well done northerngirl, thats great news and gives us all hope out there.

Know how you feel with the "Brain" bit, mine's never come back either !!

You hang on in there Tess, we are all different and NO ONE can predict our future, ok there might be a few "Bumps" along the way but we can get over them.

Take care. x x

Tess profile image
Tess

Hi girls, Good news on mid term scan. Consultant said that I have responded excellently to the chemo and the tumor on my liver has shrunk to the point that it is too small to measure! Lungs, chest and abdo all clear too. CA125 levels have halved too. Am so relieved to know that the chemo is working.

sarah1963 profile image
sarah1963

Oooh let me be the first to say 'fantastic' news!!! Well done. Have a lovely weekend. The remaining chemos will be a breeze now you know its working.

SArah

charlie12 profile image
charlie12

Hi Tess

What fantastic news , that must be so motivating for you and those around you.

As Sarah said , I hope you have a little celebration at the weekend.

Charlie xxx

Gilly46 profile image
Gilly46

May the peace of God be with you all,your strength ,courage and determination is inspirational!xx

You may also like...

borderline stage 3C tumour

condition as I had in 2015. So In January 2020 the remaining ovary has been wedged to remove the...

Ovarian Cancer Stage 4

was diagnosed with stage 4 ovarian cancer on December 26, 1017. Underwent a six hour surgery on...

Stage 4 advanced ovarian cancer

couldn’t remove all that they could see. But they remove major tumors. Doctor mentioned chemo...

Stage 4 Ovarian Cancer Survival Stories

underwent debulking surgery, that removed most of the cancer cells - there were few left on the...

stage 4 treatment From Holly

stage 3 and since have had usual major surgery. I have had 4 lines of chemo: carboplatin/paclitaxel