Hi, everyone. I am Marisa. I am 61 yrs old and live in New York.
I was diagnosed with OC in 2015. Stage 3. Had surgery to remove everything. Immediately following, I received 6 rounds of Chemo over the course of 5 months. Continued with my 3 mos CA125 test Which remained in the single digits until it doubled to 24 from 12. Went for a CATSCAN which revealed a tiny cancer cell adjacent to my liver. They said too tiny to operate and too tiny for any clinical drug. They recommended the same chemo I had last time which is Taxol. Went for my first round on Friday. Of course today I am searching for answers.
Reading through these posts was pretty encouraging. This is my first time on a support site as I am impressed with the reapectful optimism you display.
Sorry for the length, but, my question is that when one calls themself a survivor is that because there are no recurrences or a survivor in spite of recurrences. Thank you for listening.
Marisa
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Mptelesca
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Hi Marisa. I too am stage 3, diagnosed in 2007 and despite 2 recurrences still here albeit on a trial drug. Im not sure Ive ever really thought about your question but doing so now I suppose I would call myself a survivor. I had a check up and CT Scan results yesterday which were good and my Dr said 'you could survive years' so I guess he thinks Ima survivor too. I looked up the definition of survivor and one definition is a person who survives an event where others died, so despite having had 3 'events' of cancer Im still here so yes, I think that makes me a survivor. I hope your treatment goes well and welcome to the forum. Kathy xx
Hi, Kathy! I am so happy for your results! Thank you for sharing your journey with me. Very very encouraging. I thought I was doomed the moment I thought about a recurrence. Little did I know you and these wonderful women were out there. I felt so silly bringing up the survivor word, but, I just couldn't wrap my head around what I was reading on the net. Glad I stopped in here.
Good luck and stay well.
Marisa
I agree with Kathy. I’ve had 4 courses of treatment. I don’t think of myself as a survivor, but as someone living - generally pretty well- with the beast, but I guess I am, so far and for as long as.
The programme some us help with is called Survivors Teaching Students.
There’s also a good US site with lots of friendly women, respect and good advice: Inspire. Main difference to this one is a lot more praying etc, but that’s just the difference between some US and UK discourse, I think .
First recurrence is the hardest thing, a real shock to the system, so sending my very best wishes to you.
Hi, Mac27-UK, I can tell already what a great sense of humor you have! Love your statement on the US/UK difference. lol. I was born in Italy and came here when I was little. So, I paid great attention to history. (no getting low grades in my parents' household)
You are completely right when you say the first recurrence is the hardest thing. My reaction was one of relief which I, myself, wasn't expecting. Although my CA125 number went from 12.7 to 21 and hadn't hit the danger number of 35, if the scan was clear, I would have been driving myself crazy with worry. I was happy and fortunate that they were able to spot a problem and giving me treatment. I feel like it will kill any other little crazy cell that decides to rear it's rotten little head.
I will look into Survivors Teaching Students. Thank you for sharing and for your inspiration.
Hi Mptelesca i was diagnosed with 3ain 2009, had 2 recurrences, both treated with surgery, last one 4 years ago, I guess my definition of a survivor is someone who carries on regardless of what faces them. I count myself as being extremely lucky, as I have a really good support system, who help me get through whatever I need to face, so I think, for me, being a survivor is a state of mind. It does take a while to get there, and stop beating yourself up for everything(am speaking personally here) but I got there, with help.
Love your words, your attitude and inspiration! First time around I felt like I was "floating" because time slowed down while under the influence of Chemo (and lorazapam). Felt I was enjoying life more because I was in "limbo". People thought I was making it look easy and had a great attitude, but, I was trying to keep the screaming inside my own head. When you love your family and friends, you tend to do anything not to let them down. Failing at this, I was about to let them down, so, I decided to just stay strong and keep the crying in the shower. Interesting you said to "stop beating my self up for everything". So, we have met! LOL. It's what I do. Age and OC kind of makes you stop doing that because it's just not worth the stress.
I cannot thank you enough for giving me what I needed to hear. So happy I couldn't sleep last night and met you and all these lovely, amazing women!
A survivor can only really be someone living to tell the tale. This forum is packed with amazing survivors. Medically you’re a survivor for five years as that’s the window of follow up study they use. I’m six years into OC and considered a survivor even though time isn’t on my side
As they diagnose disease sooner that must change the window. I think if data study was ten years the reading would be very different
Today I woke up the sun is shinning, the pain is not great, the Rice Krispies with my steroids are good the sore tongue from eating love hearts not so good. It’s a new day though and that brings hope
Thank you,LA, for those inspiring words. I made the mistake of looking up survival statistics. I never excelled in math, however, the numbers I was seeing scared me. The first time around I was " floating" from surgery straight into chemo. Entering my 3 red year of no recurrence, I was very happy but cautious. Always waiting for other shoe to drop.
Glad sun is shining on you. You sound like your positivity is your strongest weapon. I will pop a vitamin D today (we are buried in snow here today!
Hi Marisa - Like you, I'm stage 3C, had surgery and chemo and am now awaiting whatever comes next. (I too live in the States - Michigan) My first 3 mo scan came back clear (grateful) and now I wait for the next (and the next and the next...)
I do not know how to describe what we've been through to others or frankly, how to process it for myself. We had cancer in our bodies and after treatment it is "done" we are tested and most (but not all) are given a "clean" result. What we don't know is whether or not the cancer is dormant or gone, which leaves us living in the gap - until recurrence or until some time 5 years later when we can say we "survived" cancer. Until then, we simply go on.
I do not like the terms "cancer survivor" or "battling cancer" or "winning the war against cancer" but I don't have a better term. I only know that cancer grew in my body. That we've treated it with the best that modern medicine has to offer and it is, for now, not an issue. Being fearful of what comes next will not prevent us from what comes next. We can only live our lives as fully and as authentically as possible and be in the moment.
I am glad you are on the site as I am sure you will find much love and support. I am grateful for this site and all the women who share so openly. Telling "strangers" that you are unwell or weak (or simply afraid of what comes next) is hard for most of us. Sharing the intimate details of our pain, the loss of bodily functions, the results of tests, etc. requires a level of trust that can only be had when one feels totally supported.
I have posted but a handful of times - some questions, which were readily and openly answered by the women here (thank you) and other times, I've simply shared thoughts or feelings (again with tremendous support). You should know you are welcome here, you are safe here and you are loved here.
Tell the story of the mountain you climbed. Your words could become a page in someone else's survival guide. (M.H.Nichols)
Hi, Almalyffe and thank you. I feel like such a wimp about the weather when the midwest gets pounded as a norm. As I was trying to pose the survivor question, I felt like I was making less and less sense. Your words and explanation are extremely encouraging. It's what I needed to hear. WE make the definition of what a survivor is and not the 10 yr. old statistics on the internet (which is what prompted me to run screaming). I am happy to be on this site and have just met you and the rest of these amazing women. You sound very strong and positive and I am hanging on your words. Love what you said "Tell the story of the mountain you climbed. Your words could become a page in someone else's survival guide." Words to LIVE by. Sending you postive thoughts and good wishes as you continue your brave journey.
Hi Marisa! I’m in the US too (Philadelphia, not so much snow here in the city). I was diagnosed with late stage epithelial ovarian cancer and it was too widespread for surgery. I had 13 cycles of chemo (carbo/taxol) and am now on Avastin for maintenance. I never know what to say to people who congratulate me for getting over the cancer. You don’t get over it. It’s like a chronic condition. It recurs you fight back, it recurs again you keep fighting. Surviving means taking life one day at the time and savoring every moment.
Hi, Danielle and thank you. We are practically neighbors! You are amazing and I appreciate you telling me about your "survival". I am going to look at this as a chronic condition which we just have to stay ahead of. I never walked out of my last treatment thinking I had "beaten the cancer". I think, for me, it's dangerous to live carefree...yes, I am carefree in some respects, but, I know enough in my experience never to take anything for granted. I was actually relieved when I got the word from my doctor that they found a spot and have to go back for Chemo. She turned to me and said, "so, you are relieved because the other shoe just dropped?". Yes, I consider myself lucky that we get to stay ahead of this chronic condition. If any other condition, left untreated, can result in a bad situation. So I am taking your words and going to just keep going. It's the only thing I can guarantee my family is that I will fight the fight.
Good luck to you and I'll be following with positive thoughts.
I was diagnosed 10 years ago with a rare type of oc, granulosa cell tumours (gct). There is a facebook group for ladies with this called gct survivor sisters. Some, like me, have had recurrences, some have not. So I guess that suggests we are all survivors. Di
I call myself a survivor, Marisa. I was diagnosed aged 61 Stage 3c BRCA2. I'm 66 now and going strong. I haven't had a recurrence but I know there are others that have had and are still here to tell us about it. You have an excellent chance of being a survivor.
Hi Marisa,welcome.I consider myself a survivor as I'm living with cancer.Advanced stage 4 ,diagnosed 2014.I think your doing great ,and this treatment your on now should hit that little upstart near your liver.
I bumped into a Macmillan rep (UK cancer charity) who heard I was diagnosed with OC and immediately called me a survivor because they class people as that at the point of diagnosis irrespective of where you are in treatment or prognosis.
Unfortunately she misjudged the situation slightly as I don’t personally connect with the term (similarly ‘battle’, ‘fight’, etc). However I understand why some people do so didnt get too hung up on it with her. Although I think its down to the person diagnosed with cancer to choose their terminology themselves.
You can use whatever term you are comfortable with. As I am not cancer free I prefer to think of it as living with cancer as a chronic condition. I can feel fairly positive about that phrase. But I understand that not everyone would want to think of it that way.
Whatever you are most comfortable with is the right term for you.
If you connect with the term ‘survivor’ then that is indeed what you are
Thank you, Katfish. In just a few, short days from joining this site, I have come to terms with my feelings on how I see myself. I never want to say I am a survivor or won the battle in a way where I am being overly confident and dismissive. I'd like to think of this as you have so nicely put it..."living with cancer as a chronic condition". Everyone has something they are living with. People without a heart condition eventually become a heart patient by virtue of age....the heart needs to be cared for since many times heart attacks don't announce themselves. I know I'm overly generalizing and making unqualified statements, but, I know you know what I mean.
I truly appreciate your words and wish you all the best in health and happiness. Thank you!
You’ve had some fantastic responses, I don’t know if you’ve ever watched Pirates of the Caribbean Curse of the Black Pearl?
There’s a part in it that makes a lot of sense for your question a guy says “I’ve heard stories it leaves no survivors”
Johnny Depp’s character’s reply is “If there’s no survivors where do the stories come from?”
That’s a true sentence for anything ‘If there’s no survivors where do the stories come from?’
They come from all the ladies fighting this beast, everyday that you live you are surviving, everybody is on borrowed time from the second we’re created whether you die from the cancer or something else the main thing you have to do is make it count! So you ask am I a survivor my answer is YES everyday you live you survive xxx
CallMeMum, can you hear me screaming with joy?!!!! I have watched Pirates with Johnny about a million times!!! I imitate him when it fits and even when it doesn't. Brilliant!!! Love that line!
I asked one of the Drs. at the Hospital who I am personally friends with...."Will this be a dangerous surgery?" His response..."why, yes...it could be....you could get hit by a bus on the way into the hospital".
I just can't thank you enough for making me roar with laughter....I got a bit dizzy just because I'm on Clarintin D, but, worth it!!!!
You’re doctor is right yes surgery is dangerous but you could get hit by a bus too! At least it makes a change for a doctor to be right 😂. When I was pregnant with my oldest child we had something called parent craft classes the midwives taking these classes were all saying how wonderful it would be everything would be under control anyway me being the cynical type asked the ‘what if’ questions they said none of it would happen anyway fast forward to labour no kidding all the ‘what if’ questions happened (I even got electrocuted by a tens machine). My special person who was diagnosed nearly 3 years ago is also cynical like me although she’s negative with it whereas I’m the comedian cynic done the ‘what if’ questions when she had her surgery she was absolutely fine. I’m absolutely 100% you’ll be fine too 😊. When in doubt watch Pirates of the Caribbean xxx
In trying to be "clinical" and "scientific", the Dr. made a funny. Took him a few minutes to figure out why I was laughing so hard. He was really being serious. Silly man.
I don't mean to make light, but, what is a tens machine? On purpose or accident?
You and I would make great friends. I'm the one who asks no questions. I would rely on you to pose all the "what ifs". A great sense of humor is so priceless. Glad your daughter is fine. I'm sure you make her howl with laughter.
Well, after a loooooong week of work and getting pounded with snow....I believe I will opt to stay in for dinner and watch Pirates! Thank you so much for putting such a great, big smile on my face!
A tens machine is something that sends pulses of electricity through wires on your body like a heart monitor to ease pain 😊 obviously being in labour you’re in pain anyway so I turned over 1 of the wires came out and I got electrocuted all by accident 😆 ironically it didn’t put me off having kids I had another 10 months later elective c-section 1st was emergency c-section so I didn’t have the horror of labour a 2nd 3rd or 4th time 😊then I got sterilised had enough kids by then!!
We can be friends across the pond 😊 I’m watching Pirates of the Caribbean too ❤️❤️❤️
I know this is an old string but I just got diagnosed in August--stage 3b--and have just had surgery and first round of chemo and this string is so hopeful and uplifiting. I am in the US as well. I lived in northern NY til now but just retired and moved to Cape Cod. However am marooned in North Carolina for my first line of treatment because my daughter is a doctor here and she runs interference for me. She's an enormous support. I read about your tiny recurrence and then checked out your earlier posts. It's great they caught it SO EARLY!
Wow, Delia...nice to meet you! So sorry you are going through this. I was like a deer in headlights...no clue when I was first diagnosed. We are a very tight Italian family so emotions run very high. lol.
Sorry you are marooned, but, at least you have a wonderful Doctor in the family! You really need someone to interpret what is being said.
At the time of diagnose in 2015, our friend happened to be head of Radiology at Yale. I drove him NUTS. He was very good. Had it not been for him, I would have have jumped to more conclusions than I had energy for.
How are you feeling with the chemo? Everything is relative, but, my chemo after surgery was not as bad as I thought. It gave me a feeling of safety just knowing that it would kill any little cells left behind. I guess we hang on to all the horror stories we heard.
Right now, there are so many new drugs and treatments which have been approved.
Thank you for reaching out to me. I am here anytime for you.
You will find that this board is wonderful and very supportive. I learned TONS from these wonderful ladies.
Thanks, Marisa. So far the chemo effects aren't bad but it's only two days. I was terrified before and much happier now that I've experienced it. I have a lot of family support and feel very fortunate. I will stay in touch! xoxo
Glad to hear! You may not experience this, but, if you have pain in your legs or arms during the night (usually after day 3 then dissappears after day 10) you may want to ask about Claritin. My Dr. had mentioned taking the Claritin right after chemo and it relieved the pain. However, you may not even get the pain.
Your daughter will probably know. When your bone marrow works OT, it tends to get painful. An ingredient in Claritin reg or Claritin D works to calm it down. Go figure!
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