recurrence

JaneWest

I know this is a difficult topic, and a scary one as well. Would anyone care to share their experience with recurrence: how did you find out, timeline, how you are dealing or have dealt with it, what treatment and/or surgery was prescribed for you, any advice you would share, etc. 

birdee

Hello,
I had my first recurrence in 2014, 18 months after chemo  treatment and debulking. I had to have 6 more chemo treatments. Eight months went by and my second recurrence occurred. Back for 6 more rounds of chemo. I started on olaparib in April 2016 and the cancer is currently stable. The chemo knocked me on my butt each time. 

JaneWest

I'm glad it's stable now @birdee   What is the olaparib for?

CurlyHair

I had a recurrence in January 2017.  I had ascites develop and went to my GP.  I had a CT and found it had recurred.  Went for chemo and it is clear again.  Now monitoring.  Doing OK.

Quiltmama

I had recurrence in May 2017 just 7 months after my front line treatment was done. It started in my lungs just like the first time. I was devastated that it came back. I have just finished 18 weeks of chemo with Carbo/taxol and my last CA125 was back down to 15 (was 2,000 in May). I'm booked for a CT scan in October and see my oncologist on Oct 30th to see if I'm NED again. How do you cope with the constant worry about recurrences? I feel that each recurrence is one step closer to my death. I am a very positive person and I really feel like I've beat this again but there are times when the worry gets the best of me.

meganG

I was diagnosed in April 2014 and had surgery,debulking and IP and IV chemo with carbo/taxol.A year later I was experiencing reflux and back pain.The Drs put me on Tamoxifen to see if it would stabilize.Six months later I started carbo/caelyx.Both chemos I did fairly well with mixed responses.and very little side effects.Seven months later I was on  chemo again! On Gemcitabine this time.This has been hard this time Everyone reacts differently.My mid treatment CT showed mixed response  again which gave me encouragement.Awaiting a followup appt.I am one of those people who needs to know exactly what is what.Something I find some Drs feel is not necessarily positive.A second reoccurance was hard to get my head around so soon after my first  but I will take any positive thing.After all this my symptoms of reoccurance have been the same ,usually indigestion,reflux and back ache.You have to be aware .

Flowergirl

Thank you all for sharing. This recurrence is so hard to wrap your mind around. This has been the difficult thing for me also. I keep wondering how will I know... yoga, activities and doing what you can that makes you happy has helped keep the mind at ease. It is those times when the worry seeps in that are difficult. 

Nanakaw

Hi Flowergirl. You will know when your CA 125 levels climb beyond normal. My Dr uses double the high normal (30) which is 60 as threshold for trouble and a CT scan confirms it. Symptoms follow- bowel changes are one marker.  Pain, gassy, constipation, narrower diameter stools. It depends on where tumours are growing and what organs they impact.  I have lung and liver tumours but no symptoms from them at all. Yoga changes over time is a good way to tell. You'll know if your twists etc make your tummy feel more bulkier, painful, etc. than usual. If you have a remission they  retreat it with chemo. 

CurlyHair

Hello Flowergirl.  I definitely agree with Nanakaw.  Constipation is a big thing.  Not able to pass gas for very long is another.  My oncologist said way back make sure you can pass gas.  Walk! Sudden weight gain maybe.  A couple of pounds in a week say if you do not expect that.  I had ascites(fluid) build up with initial diagnosis and my recurrence so far.  

Flowergirl

Thank you all for sharing - they don't track the CA125 and no diagnostics as routine monitoring so those are not markers for me; that in itself makes it hard to comprehend how will you know then. Awaiting followup so anxiety is through the roof. 
Familiar with ascites as I had that pre surgery and post chemo  - 2 times had paracentesis (fluid drain).
Need to put trust in your oncology team, write down all your questions in between appointments and monitor all the physical symptoms. 

irishsurvivor

 I was diagnosed in 2012.. Chemo and surgery. Monitored every 3 mths at first then 6 then yearly. I had no problems at all during this time... In Jan this year my CA125 was up.. Not a significant amount but I also had been experiencing some slight pain in my upper abdomen. Oncologist decided to send me for CT scan just to be safe. CT scan showed spot.. Surgery in July removed 5 nodules  same cancer as before. They got everything so no Chemo..  I have so much faith in my Oncologist and his team . Since my first diagnose I have really tried to stay healthy .. Eat the right food, exercise Listen to my body.. I believe it has helped and that maybe it may have been worse if I had not been doing this.Going back to work again in one week..... Yes it can make your life really miserable if you let it.. Can it return again.. Maybe  but maybe not... I almost got hit by a crazy driver doing over a 100k a couple of weeks ago.!!!!  So I will not let it control my life. I will live day to day and be thankful for every one I get. Of course I have my bad days and it is very easy to get paranoid but I will keep fighting  for me, my Family and for all of us... Sites like this are great because it lets us know we are not alone .. 

terrylee

@irishsurvivor I just passed the 1 year anniversary of my surgery and October 17 will be 1 year since I was told I had cancer. I have been cancer free since (no chemo) but have an ultrasound coming up in a few days and I am scared sh*tless to say the least. Part of me is saying chill out girl but yet I'm hyper aware that even though I have been given a good prognosis, recurrence is always a possibility. Trying to let cancer not rule your life is an uphill battle and at times it is worse than others. You seem to have a great attitude towards life in general which is great to see! I love this community you all are very honest, compassionate and supportive, and reading about everyone's ups and downs in their journeys gives me hope that if a recurrence is in my future I can get through it too!

irishsurvivor

 Hang in there terrylee.. Yes it is a battle but one we can and will win.... It is scary going for appointments and scans but try and stay positive. I had one person say to me.."Why do you bother eating healthy now "?, "your cancer came back so it doesn't work  ".. My answer was..".Obviously my body is  susceptible to cancer so I have to help my body fight it.Maybe if I didn't it would be a lot worse" !!  ..  My family are amazing and keep me strong.. I have amazing Grandkids who know all about my journey and love telling people that their grandma is Irish and she kicked cancers butt.  This alone keeps me positive and strong and I truly believe that being positive goes a long way . 

Quiltmama

So nice to read everyone's experience with recurrence. Knowing that I'm not alone with these feelings helps. I too have been staying positive. My husband and I plan little overnight getaways when I'm feelin good!! Stay strong teal sisters!!

Unknown

I was diagnosed in July 2013, had chemo then debulking then chemo again (carbo-taxol). Was in remission for 18 months, 6 more carbo-taco and recurred after 6 months. Tried trial immunotherapy for 6 treatments,  did not work. Since January have been on another trial drug called Niraparib and my CA-125 has gone down and regular scans every 8 weeks shows disease is stable.
In the meantime I walk daily,  have taken my retirement  (I'm 51), go for acupuncture,  massages, eat well, see a psychologist, etc and living today. I have a 14 year old son and I will do anything or try any trials out there in order to stay alive as long as I can.

Gail xo

JaneWest

hi @Fibi , welcome! You have incredible strength, I can see that from what you've described. I'm glad for you that you've taken retirement and are doing so many things to be well.  I have found since diagnosis that my perspective has changed dramatically. I feel so grateful that I am able to be off work while going through this. I'm a bit older than you, so am thinking what will be the next step in terms of working life. Got to enjoy every day!!!

Bishop21

I was diagnosed In June  2016, I had my attempted debulking surgery in July 2017 however they could only take a tumor out of my stomach so I still have my ovaries. I did Taxol/Carbo and Avastin from Aug to Dec 2016. I was also doing maintenance chemo Avastin from Jan to June 2017 when my occurrence happened in June 2017 so at 6 month I'm back on Taxol/Carbo again, I'm still in treatment as we speak.

I was diagnosed at stage 4. Has anyone had a occurrence that has been similar? I get treatment at Credit Valley hospital and see Dr. Butler at PMH as well. Dr. Butler has already told me that I have a 95% chance of relapsing again this time within 5 months. 

JaneWest

@Bishop21 I'm sorry you've had such a difficult time with this. It sure requires an incredible amount of strength. Sending warm vibes your way.

CurlyHair

Hello @Bishop21 I am sorry to hear about your recurrence.  Please ask your doctors about clinical trials.  There are drugs being tested that are new and may be able to assist you.  You can go onto the UHN website to look up clinical trials for ovarian cancer as well as Sunnybrook to see what is being done.  The doctors at PMH should be able to answer that.  Please call them.

Jeannie

It’s so nice to have this chat room to read about other’s experiences and know that you’re not alone!  

I was diagnosed in June 2014 had chemo, surgery and more chemo and was in remission as of April 2015.  I had a recurrence in November 2016, so I had chemo for 6 months which didn’t work so started Paclitaxil and Cisplatin for 3 treatments.  This has kept the tumours from growing but has not shrunk them.  This regime has been so hard on me I am taking a break for a little while.  I will be monitored every 6 weeks.  My CA-125 has gone down but is not less than 35.  The CA-125 is accurate only to a certain point because other conditions can cause it to be high.  So Dr’s cannot use this as the only indication of a recurrence which is why they also order CT’s, etc.  Good thing they’re so smart!

I try not to worry about recurrences although that is easier said than done! I have a strong Christian faith which really helps me.  That doesn’t mean I don’t get upset or stressed but it does help a lot.  I was very angry when I found out the last chemo didn’t get rid of the tumours and I’m still working through that!  

CurlyHair

Hello @Jeannie.  I already stated this somewhere but please ask your doctor about clinical trials.  These new drugs help with suppressing and treating.  Genetic information is useful as well.  If a person has the BRCA 1/2 gene mutation it can help doctors decide medications.  Ask about that as well if you have not yet.  CA 125 is not a great test as you state.  Inaccurate in many cases.  Not a perfect number.  

MarilynOCC

Hi @Fibi.  Welcome to OVdialogue.  It seems that in the midst of some really difficult things you are finding ways to really care for yourself.  You have been through a lot of ups and downs with treatment as many other women  have too so the fact that your disease is now stable for almost a year is something. I assume that you are continuing on the Niraparib?  What do you find most helpful about the various things you are doing to care for yourself?  Was it is a difficult decision to retire?

MarilynOCC

Hi @Bishop21.  Welcome to OVdialogue.  It sounds like you have been in treatment since you were diagnosed - that's hard!  As @CurlyHair has said, you may want to talk to your doctors about clinical trials if they haven't raised it with you yet.  I'd also like to introduce you to @Quiltmama and @PrincessFiona who were also diagnosed at stage 4 and @midcanada who also had partial debulking surgery.  Perhaps communicating with them may be helpful.  How did you/do you deal with the information that the doctor gave you about the chances of another recurrence?

Jeannie

Hi @CurlyHair . I have asked about clinical trials and there is nothing available to me right now. I also had genetic testing done in 2014 as my oncologist requested it. I was negative as I assumed I would be. There is very little Cancer in my family. We are very fortunate! 
I try to do a lot of reading and research about my Cancer & I try to keep up with all the newest research coming out. I was a Health Records tech prior to retirement so I’m fairly well informed and comfortable with my Dr’s and other health care professionals.

CurlyHair

Hi @Jeannie.  Pardon me.  You are on top of it.  Good day 

Jeannie

No harm @CurlyHair! I know you meant well. ☺️

Quiltmama

I just wanted to share an update on my current recurrence. I'm now NED!! No signs of metastasis, no tumors and lymph nodes are normal according to my last scan.  My CA125 is now at 11.  I was very happy to hear this news again and I'm feeling really well. It's just so hard to not think about it EVERY day!! How long will this last, how will it come back and can they treat it again!! Trying to just live each day to the fullest but the cancer just creeps back into my thoughts. It's so hard living with this. Glad we have this forum to connect with each other!! 

irishsurvivor

Congratulations Quiltmama  So happy to hear you are NED. I know it is hard not to think about it returning but you have done really well. I know we try so hard  not to think about it but yes it has the habit of creeping back into our heads  but  you know what, that's okay because we are going to beat this.. We are going to live every day to the fullest and we will keep fighting no matter what happens. Yes this forum is great.. Keep up the good work  . !!!!

CurlyHair

Congrats Quiltmama.  

MarilynOCC

Hi @Quiltmama - Congratulations!  That is great news!  You must feel so relieved!  Enjoy that feeling for as long as possible.  I think it is normal to be concerned when the cancer might come back and learning to live with that fear and anxiety can be hard. There are a couple of webinars that we did last year called Fear of Recurrence and Living with Recurrence that you might find helpful.  

The Living with Recurrence webinar has 2 women sharing their stories of how they have coped with multiple recurrences.  Ovarian cancer is sometime referred to as a chronic illness because women can have different periods of remission, recurrence, more treatment and then remission again.  These 2 women talk about how they have managed this process over several years.

Here is the link to the recordings our website:
http://ovariancanada.org/events-support/go-online-for-support/webinar-series

And as you say, and @irishsurvivor,  try to live each day to the fullest when you can and reach out to others if/when you need a boost or can give someone else some encouragement...
 

Quiltmama

Thank you Marilyn. I have watched the webinars and did find them helpful. I also registered for the webinar on Nov. 15th. Ovarian Cancer Canada is an excellent source of information and now we have this forum to connect with others!!