How long after original diagnosis and treatment did recurrence happen?
Hi lovelies, just wondered how much variation there is in the recurrences some have been unlucky enough to have.
Hi Zena. I stopped first line in January with a stable outcome but the bugger grew immediately. Avastin did nothing. So although not strictly a recurrence, as I wasn't NED, it still came back and in new sites. I'm wondering why you are asking. xxxx
There's no particular reason. I don't think mines back. I am interested to know how many had returns after five years but I would imagine that quite a few leave the site as time goes on.
How are things with you? xxx
I'm ok Zena. Having my third carbo/caelyx on Thursday so trying to make the most of the next couple of days feeling fine - despite a stonking hangover all day. It's worse with the caelyx I'm sure. Well, I was told not to drink so have no-one else to blame but myself.
Having read all the replies to your post it seems there's no pattern at all to this bugger disease. My next PET is on 10th July and then see oncologist next day with, I hope, some better news than last time. I'm sure the lymphs next to my breast have shrunk just a teeny bit but of course that means nothing in the whole scheme of things. I just keep wishing the nasties dead inside me and hope it works. I'll be having a BRCA test some time to see if I can go on tablets after this lot of chemo - assuming it works again. Don't know what yet as we haven't had that conversation yet. Perhaps next time.
In the meantime, you stay well and keep us all going. xxxx
I hope you get better news as well Kryssy. At least you're in a positive frame of mind. Let's also hope for you at least, that the BRCA is positive so you can get on the tablets. Unfortunately, although it will be good for you it gives the added worry for you of your family members. There's just no winning with this one.
Be thinking of you and wishing you all the very best, xxx
Thank you Zena. Will it only affect girl relatives? I have four sons and I wouldn't want anything passed to them. My birth parents died at ripe old ages 91 and 87 so I doubt cancer got them. Father had all sorts, according to his death certificate and I don't know about my mother as I haven't sent for her death certificate yet. I'll do that when I get around to applying for my Irish passport. Better get my skates on as only got until next March and then I'll be escorted to Calais by the gendarmerie and stuck on the slave ship back to UK
You stay well too. We've got about 35 degrees tomorrow and I bet most of them are in the chemo clinique. I'm sort of looking forward to the ice bands on wrists and ankles. That'll do the trick. Trouble is, they then stick a double folded duvet on top of me to keep me warm. Phew!! No glory without a fight. xxxx
Kryssy, don’t know whether anyone else answered your question re BRCA genes , I was told that one of them ( can’t remember if it’s 1 or 2) can affect males . I had to have counselling before I had the test and had to sign to say I had understood all the possible outcomes .
I have BRCA2 and was told my son had a 50% chance of carrying the gene. He will be given a blood test yearly to check on prostate cancer but no other checks.
Hi I think I've told you before I'm BRCA2, my daughter has also now been tested positive for BRCA2. My son as yet does not want the test. I was at a BRCA information evening last week and the difference between 1 and 2 for males is that BRCA2 carries a higher risk than 1 for prostrate and pancreatic cancer. Screening starts for all BRCA males from 40.They also carry the risk of male breast cancer. The good news is that if they want to have children they can choose the IVF route any effected eggs / sperm can be rejected and only implant the good ones, so the BRCA gene is not passed 😀 It was a very good evening lots of new stuff in the pipeline for female carriers too
Thanks for the info it's useful to know. Luckily, my son doesn't want any children. As yet he doesn't know I've got the BRCA2 and neither does my daughter. She's pregnant at the moment but I'm going to tell them both soon. I've already sorted out the rest of my family. I was adopted but managed to track down 3 sisters but not my brother. Only 1 has the same father as me and it looks like it comes from that side of the family. I've no way of tracing them unfortunately as my father came over from Poland to fight the war and didn't go back. My sister lived with them all her life but doesn't know anything useful. At least I know I've done what I can.
Hope all goes well for you. Zena x
Thank you girls. I've taken that all in and when I have my results, good or bad, there will be discussions with the boys as it could affect their children too. Let's hope there's nothing sinister to report. I know when I got my very high cholesterol report about 8 years ago it came as a complete shock as I don't eat foods that cause high cholesterol so I've never had a proper blood test, just a question and answer form. A new GP decided to give me an MOT so he could familiarize himself with my body. Sexy beast! Turns out it's hereditary but my birth parents lived to ripe old ages so the doctor said not to worry but I started eating almonds every day and now it's normal. My sons got tested too and only one has inherited the condition and keeps it under control. It's amazing what we pass onto our children - and what gets passed down to us too. I could have done with a few more £.s.d. passed down to me - nothing else.
Zena - it's really unfortunate about your dad and you having trouble trying to trace him. You may be able to track down either his military records or death certificate via this site - gov.uk/order-copy-birth-dea... - that's where I get all my certificates from and if they can't find one they are very helpful in trying to find something in case you have a date wrong or place. I know you said he didn’t return from the war but there may be something in his records that gives you a hint as to his health – although gene testing wasn’t really around then. It’s a suggestion.
Love and hugs xxx
Thanks Kryssy, Are/were you in a similar situation to me? I'll give you a bit of background but if it starts boring you to death I'll understand.
I was searching for my birth family for about 40 years with no luck. I used every official group I could find. By coincidence I sat next to someone at work who was telling me about their friend who was looking into her family tree and how good she was as she didn't even have some of the correct names. Well this friend helped me. I only had my mothers name and her date of birth. The name I had was wrong. Her two christian names were reversed and her surname was down as her married name but she said she was Miss not Mrs.
How she did it I'll never know but within days she'd found something and ordered me a death certificate. From this she found I had (up to now) 2 half sisters, a half brother and a full sister. I was number 4. I got birth certificates for all but my brother as I can't trace him.
The story I've been told is that my mother took her son and daughter to school and didn't bother to pick them up. Her middle daughter was adopted as she had a different father. I believe but don't know, that she was pregnant with me and didn't think her husband would accept another child that wasn't his. She may have hoped she stay with my father. I don't know why she got rid of me but my adoption record states she didn't want to be encumbered with a child. Well whatever happened she was with my father when she died and had another child with him.
I've met my full sister who is 5 years younger than me. She lived with both mum and dad until they died and didn't know they weren't married. My mother was never divorced but her surname on her death certificate is my fathers surname not her married name. My husband thinks my mother should have been buried in a y shaped coffin with all the different dads.
By the time I met my sister both parents were deceased but I've got both their death certificates and loads of birth, death and marriage certificates on my mothers side.
When I went to London one day I decided to visit the Polish Embassy and they kindly gave me a few bits of information that I could try and I did indeed get my fathers war records. It wasn't easy though. Red tape and all that. On the war records it gave his mothers name and fathers name but I have no idea how to get their birth/death certificate. I had a go but just kept going round in circles. I need a Polish person to help translate. I managed with the war records using a translation on the computer but I can't read the writing on some of it. I know a Polish lady who works in the Hard Rock Cafe in London and she said she'd translate it for me but I rarely go there now. I think it will only say where stationed that sort of thing. I did get his religion and that he spoke Polish, German and English which is more than I can do.
After all the years living with my father I'm surprised how little my sister knows but it is what it is. I had a very good childhood so I've no complaints there.
Well, that's about it. If you got to the end thanks for reading and if you've got any suggestions I'd be please to hear them. Thanks for your help up to now. I'd be interest to hear your story.
hugs and thanks, Zena xxxx (by the way my name was never changed when I was adopted and I found out years ago that I could have had a copy of my birth certificate all along but didn't know. When I did finally get it the 'father' part was blank)
Fascinating. Thanks for posting.
I was diagnosed almost exactly 2 years ago, finished chemo in December 2016, Avastin in September 2017, just told of new recurrence.
Oh, I am sorry to hear that Rachael. Thanks for your reply. xx
I was given ned and next day got a phone call saying was back
Now have it in peritoneal lining and been told I have 12 months
I also have it in peritoneal lining. Are they trying you on any new treatments? Have you got a 2nd opinion? Xx
Trying caelyx then a scan next month tonsee if its doing much. No 2nd opinion as of yet x
Ang, get a second opinion. I'm on carbo/caelyx for first reoccurance. Ask them why you are on single agent only. They work better in combination.
Oh Angie you must still be in shock. I'm so sorry to hear this. Miracles can happen. xxx
Three years stage 1C told curative. Recurred isolated told still curative. Two years told not curative now lol. Wish they’d make their minds up! Not clear since May 2017. Tumours about the same size. New additions bladder tumour thought to be a special gift from carboplatin and has crept along pelvic wall. Spots in small bowel come and go. Liver liesion unconfirmed as cancer as colour size and function normal. Lymph node in neck unchanged for 18 months.
Body striking intermittently but mind still thinks body is 18 😂😂
You need some good news Lily-Anne and I hope you get some pretty soon. It all sounds awful. xxx
It’s not all bad. Out of six years I had five clear. It is what it is but I’m quite cheery.
Bored of not being able to work or go out much but I’m luckier than so many
My special person got diagnosed in 2015 got told she’d live 6 months with chemo, so far she’s been on a 6 month reoccurrence pattern until she started Niraparib she’s nearly 11 months since 3rd line treatment but we’ve been told it’s on the move again and this month is on watch and wait! X
Shows that they don't really know. Guessing doesn't always help us. On the move doesn't mean the end. Fingers crossed for good news. xxx
To be honest we’re so used to bad news we just say it’ll be what it is and we go from that point and see what’s next x
Hi Zena I was given very positive prognosis after finishing first line in January and after scan and Ca125 was 18
Beast back may 2018 Ca125 went up to 1993 and CT showed tumour like cling film next to bowel so back on treatment (CEBOC trial) now for first recurrence after only 4 months xx I’m hoping I get a much longer remission this time please!!
I'm hoping so too. Thanks for your reply. xx
Hi Zena, I finished first line in July 2016 and had recurrence in April 2017, so 9 months. Finished second line in January 2018 now stable and keeping everything crossed. Jan x
Good news there. Thanks for answering. I'll keep my fingers crossed also. xx
Hi Zena. I am now 20 months clear. Check up in August, so beginning countdown to high anxiety time.
Good news. Try not to worry too much (I know we always do). 20 months is good. xxx
I got NED Oct 16, reoccurrence Feb 18, I had reoccurrence in vaginal vault above liver, and three pelvic lymph nodes.
Had 2nd surgery to remove vaginal vault, now having Carbo/ Taxol, due to ca125 only going up a couple of points we will now rely on scans.
I'm sure it will all go well for you this time. Be thinking of you Ellsey. Thanks for replying. xx
Having read all the replies I count myself as very lucky as I managed five years before a recurrence. I have just finished chemo and have a scan on Thursday. I see my onc next Tuesday and then start Ulaparib. Not sure what to expect but at least it’s not chemo xxx
Will keep my fingers and toes and wonky legs! crossed for you and hope you get at least another 5 years. Hugs from Australia
Thankyou. I have family in Perth and hope that I will get the chance to visit them. Good luck and hugs from me xxx
I agree with Tara only without the wonky legs. Thanks for replying. xx
I finished first line treatment December 2017, CA125 was down to 32 and scan was NED. At first 3 month check in April 2018, CA125 was elevated and a scan confirmed it had spread to lymph nodes in my chest. Had my first lot of second line chemo last week xxxx
Sorry to hear this. Hope the chemo goes well. xxx
Thank you xx
I had optimal debulking but it had grown back by the time I finished frontline.
So unlucky. I hope you're doing well now. xx
9 months for me.
There doesn't seems any reasons for the variations that everyone has. Hope all is going well. xxx
I was diagnosed 2008, 2c grade 3 serous. Had total hysterectomy and six carbo/taxol. All well for eight years then summer 2016 back, eight rounds taxol with carbo then cisplatin. Had eighteen months without treatment but began third line yesterday. Six rounds taxol and cisplatin. Am looking at possibility of more debulking surgery mid way. All the best Jo 🌸🌻🌺🌼🌹
That was a long time clear, Jo. What symptoms did you have to make you go for the check up for the recurrence? I didn't have any symptoms the first time round so wonder how I would know if it returned.
I wish you all the best with ongoing decisions and treatment. Keep us up with what you decide. Zena xx
Yes it was a long time. Thought I’d got away with it. Symptom initially totally different was suffering sporadic bouts of vomiting (something totally alien to me; apart from being seasick in the Bay of Biscay in 1992 I’d not thrown up through two pregnancies and food poisoning) . First two were months apart and alarm bells weren’t raised until the episodes started to come just a couple of weeks apart. By the time, I’d been seen and scanned, the usual bloating and feeling full quickly, symptoms from first time, were pretty obvious in retrospect. By all accounts, it’s a nasty piece of work this OC, creeping up on us in many different ways.
Thanks for your good wishes and will keep you all posted. Jo xx
First diagnosed 2000,first recurrence 2004, second recurrence 2006, third recurrence 2010.Clear since then!Left with loads of problems from surgery and chemo but no cancer for nearly eight years.My surgeon doesn’t understand why as he had me planning my funeral at my first stage4 diagnosis in 2000.
Some good news at least, Viv. When I was first diagnosed I was under the impression that if it returned there was no cure at all. I've been given hope reading these posts.
Here's to your many more cancer free years. xx
So much hope thanks x
9 months for me . Finished chemo August 17 , the beast was surprisingly confirmed as being back May 18 . Started 2nd line chemo Carbo/Caelyx 2nd June.xx
There's no logic to it. Everyone seems to be different. I'm sorry to hear it returned to you and hope all goes well this time. xxx
No your quite right, I thought that if you were stage 1 the chances of it recurring were very small but since I have been on this forum I have seen a few with stage 1 diagnosis that has recurred , of course that could be that we are here because we want help , I never looked for a forum when first diagnosed but when it recurred I was desperate to hook up with others to vent and to get tips for a new chemo regime .There must be many more who are not on here and are many years since diagnosis , at least I hope there are. My cancer was staged at 3c so I always knew I had a 80% chance of recurrence .xxJuliaxx
Mine was stage 3C also. I've learned a lot on this site. I would have asked a few more questions at the hospital if I'd known some of the things I needed to know. If you know what I mean. For instance, no one mentioned anything about bowel blockage so when I got that it was a surprise. I hadn't a clue. I wonder what else there is around the corner that I'll come across.
I didn't know there was an 80% chance of recurrence. That makes me feel even luckier. I did wonder why my trial nurse told me that quite a few on the trial weren't with us any more. It's just a waiting game.
Best wishes, Zena xx
Hi Zena. I was diagnosed 3c in 2011 (BRCA neg). Following ops & successful chemo, I asked my onc what the prognosis was. He said 50% chance it'll be back within 2 years. It was back in 18 months. Then went on carbo/caelyx/avastin. Went straight into remission again with avastin continuing indefinitely - marvellous stuff. It's been 3.5 years . I'm fit & well.
I did read somewhere that, altho you're more likely to get OC if you're BRCA pos, you're also more likely to survive it. I know someone BRCA pos who had Breast cancer followed by OC. She's been cancer free for around 30 years.
There are statistics but always exceptions to them. Best wishes. Pauline.
I agree Pauline, statistics can be very misleading. I say even if it's 100% that I won't survive I'll be the one that does and changes the statistics to 99.9%
I'm really pleased you're doing so well. Long may it be so.
All the best, Zena xx
I keep thinking this all the time. It’s driving me mad. And I just hate not being able to be happy for good news xx
Just got back from Disney with the grandchildren. I am 3c diagnosed in March 2013 recurred April 17 but took a long time to find after my ca125 started to rise. Finished chemotherapy in March. I just keep repeating my thoughts at the beginning saying to my beast "you are off" and you cannot change the past and you cannot predict the future so live for today hence the trip to Florida.
I'm glad you had a good time in Florida. I did the same last year. I've been of Oman, Europe and off to India next year. I've even booked tickets to see comedians for September 2019 so I must think I'm going to be here to see it all. I'm not going to miss out on anything if I can help it. Just forked out for a new guitar as well and bought an electric piano. Can't help myself can I?
Best wishes, Zena
I've been told it's a tumour and most likely cancer on my left ovary. I'm going frantic waiting for
Hi lovelies I was just curious those of you who have had your original tumour tested how long after
more tired. I feel a little short of breath and have some discomfort in my lungs. It seems to get worse...
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