Years without recurrence

LynneA

I am halfway through chemo and it would be great to hear some stories about women who did not have a recurrence.   I was high grade serous stage 2.  Although I know that recurrence is a definite possibility I also need to know that it could be gone for good.  Thanks 

kastoyles

@LynneA - I was diagnosed in January 2016, finished six rounds of chemo in July of 2016. To date I have had five years NED and according to my oncologist, will graduate when I see him for the last time in October. I was Stage 1C Clear Cell.

LynneA

Thanks that is helpful 

Fearless_Moderator

@LynneA
Unfortunately I'm not one of that team myself, but I can tell you that prior to Covid I belonged to a local support group of about 12 or so survivors.  Of those gals three were survivors of over 25 years; one actually had her 30th anniversary just before she shut down our meetings because of Covid.  Beyond them, one member celebrated her fifth year and is now seven years without recurrence and two, both stage 3C like me and diagnosed the same year I was, are still without recurrence five years later.  So that represents about half our group.  Statistically unique perhaps but it does give hope, even to those diagnosed in advanced stages, that cure is a distinct possibility given advances in treatment the past few years.
Good luck....and best wishes. 

LynneA

Thank you that does help as do the stories of people who are finding options for a recurrence.   Hoping that things go well for you.   

Bobby

Lynne, I was diagnosed with Stage A in spring of 2020, large 20 cm tumor right ovary, just starting to impact fallopian tube.  Had complete hysterectomy, no debulking, no BRCA markers.  6 rounds of carbo /taxol completed Nov /20.  I go quarterly for check ups and so far so good.  I have read - and they are older stats - that a Stage 2A candidate has only a 30% reoccurrence rate or less on average. I cannot function thinking the worst case/negative thoughts so I am living with the mindset that I thankfully caught it earlier than most and will live a long life.  Of course that if and when a reoccurrence happens, I will be crushed but in the meantime, I have a life to live.  Hope chemo treatments go well for you.

LynneA

Thank you for sharing.   I am trying to think along the lines that I had cancer and it's gone (going).  Can I ask what the check up involves because my oncologist says that he doesn't do any.   He just waits for symptoms.   Thanks again 

Bobby

My oncologist sees me quarterly for first two years, then twice a year for next two the annually last one I think.  Then i think you self monitor.  She does internal, checks my lymph nodes at neck and groin and inquires about any changes to bowels.  I get my CA bloodwork done the day before and she also provides the result when I see her.  CA each time was optional as not always complete indicator but for now, I want to see know.  I had really vague symptoms so for me, it would be hard to know what symptoms I should be reporting.  If it wasn't for COVID forcing me to slow down and work from home last March, I would have ignored for sure and would have been in far worse position .  I am grateful.  

LynneA

I was also very fortunate that I followed up on what I thought was ibs.  I have an appointment with my oncologist next week so this is helpful.   Thank you and sending positive thoughts. 

Bobby

Final comment as I don't really get on and say much on this site...while I was having treatment for hours, alone with my thoughts, I developed such an appreciation for what is really a sub culture of people of all ages with all types of cancers getting treatment.  Although I know cancer is a hugely prevalent disease, I was quite oblivious to what goes on in my case, CVH, each and every day.  When I walked out of my final treatment in Nov it was dark, I was one of few people remaining in the unit. With COVID in full swing then and limited night staff in the hospital, it was almost eerie.  The first few treatments I could not wait for it to be all over, then when it was, it was the strangest feeling.  

LynneA

It is an amazing community in many ways 

kastoyles

It took a long time for the 'cancer mindset' to ease for me. It occupied every minute of my day (and sleepless nights) when I was going through treatment. Then all of a sudden, I was on my own and separation anxiety creeps in. We are so used to appointments and treatments then BAM...nothing. I saw the oncologist quarterly for the first two years. Had bloodwork done, physical exam and symptom questionnaire. The next two years were every four months and the six month intervals until the end of year five, which is October 2021 for me. Bloodwork done every time, but not always a physical or symptom inquiry. I also had genetic testing done for breast, colon and ovarian cancers after I finished chemo. I was negative for each and that greatly reduced my cancer anxieties. My ovarian cancer was a fluke, apparently. BUT it just means I'm just not genetically predisposed, I could still get them.

I found a local support group which helped tremendously. The inception of OVDialogue connected me with ovarian cancer patients. It was, and continues to be, a game changer!