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Worries of Recurrence

Worries of Recurrence

Hi, I am a Stage IIIc ovarian cancer survivor. Diagnosed April 28, 2015. Two surgeries, six rounds of Carboplatin. I have been in remission almost one year. I am wondering how any of you may have found out about recurrence. I am afraid my CA125 level will not warn me of recurrence. It was only 32 when I was diagnosed. Of course the Dr cannot see everything during exams, so I am nervous that it will return and I will not know it until it is very out of hand. I did not have a large mass, I had a lot of small spots & nodules, so I don't know if scans will show anything that small. (It was originally found because I had a laparoscopic procedure to check my Fallopian tube for blockage because I was trying to get pregnant. The Dr saw the spots & took biopsies.) If any of you have had a recurrence and would not mind sharing how you found out, please respond. I know I can't live my life dwelling on it but of course I do think about recurrence. Thank you!

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Hi, I'll share my recent experience however it's important to note that as we are all different that even if we had the same type, stage and grade that my recurrence etc may not be the same as anyone else's

Diagnosed with clear cell 1C grade 3 March 17th 2016 after surgery Pathology report. Previous rupture, ruptured again during surgery and cells in abdominal fluid. CA125 was only 30 before surgery.

Six carbo/Taxol and last chemo 29th July 2016, NED as at Aug 2016

CA125 trend:

13 after chemo 5

14 at Aug (NED and clear CT scan)

21 at 24th Nov and slight abdominal pangs so sent for CT

39 at 8th Dec but clear CT. Rising trend but no symptoms so on watch and wait. OK with that.

Jan 2017:

Started to lose appetite about 13th Jan

Started to get feelings of abdominal pressure and indegestion which became chronic over the next week

Thought I noticed my tummy bloating but ignored that!! Trousers became tight across my bottom as they pulled !!

Couldn't tell if I needed to pass a motion

Wretching sometimes violently

Started to feel unwell

Went to Dictors for additional CA125 on 25th Jan (9am) , she noticed I was unwell and more bloated. Told to go home and not go to work. Doctor contacted my CNS and my Dec CT Scan was reviewed, all ok so told to go back to doc if still feeling unwell in a few days.

Received a telephone call from both the doctor and my CNS in the afternoon saying my CA125 had come back at 2292 so I needed to go to hospital via A&E.

Hubby and I went to hospital, I was checked, given an X-ray and put on IV fluids and admitted to X Ward. Something seen on the X-ray re my bowel and they also thought I may be getting a bowel obstruction

Had CT scan on Thursday 26th:

Thickening of peritoneal wall

Stranding on my lesser Omentum

Blood clots on my aorta leading to both lungs

Moderate Ascites

Kept in hospital for 3 nights.

Told I have a metastatic recurrence, am now on daily steroids, had Ascites drain 6th Feb ( 5.3 litres removed what a relief!!), low residue and low fibre diet now plus supplements to replace lost protein through Ascites, daily laxatives, daily Omeprazole for tummy.

Currently waiting to start weekly Taxol. Waiting for either PICC or port as my veins are now poor.

My symptoms were very recognisable !!! I also worried before if I would recognise any symptoms but they became clear even if I chose to ignore them!

I remain positive

Take care

Clare xx

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Thank you for sharing! I know we are all very different but I have been so curious about how others found out about recurrence. It is all so scary. I hope all goes well for you!

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You have been through so much, I know it's tough to stay positive all the time but I'm cheering you on! :)

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Poor Clare, that's awful, I'm so sorry it sounds like you need a break. You and other women give us hope for the future. Sending love and hugs your way💕🙏🏻

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What relief you must of had when they drained you! I am so sorry about recurrence!!my biggest fear right now as I'm recovering from the surgery. I'm not going to do chemo...everyone on here has done the chemo and it still recurred! I'm going to try lifestyle method and thc oil and Marijuana!just started smoking it and I can eat and want to eat!I offer my prayers to you!!I wish for you to get better

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I do know lots of ladies who hsd chemo and did not have a recurrence, but I'm sure you have researched. X

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That's what I'm doing now..is researching. I just don't know

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My recurrence happened 8 years after being cleared. My CA125 has always been very low. It is not an indicator for me. Perhaps because I have clear cell ovarian cancer. The only way I have of knowing if there is a recurrence is CT scans unfortunately. I get them 3 times a year.

I have maintained a positive attitude and I am now 70 yrs old. I was 60 when first diagnosed during a surgery to remove a mass. I live in so California and have terrific doctors. I think that also makes a difference as well as your being vigilant for any changes.

Good luck and stay positive.

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Hi positive attitude here too 😁 Think that's very helpful both for me and my hubby and those around me. Great post.

Take care

Clare .

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Good Doctors do make a big difference. I did not click with my first oncologist. I really like the one I have now. This is all still so new to me. I am a positive person & have a great support system. Thank you for sharing!

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Did you do chemo on your first round or at all?

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Sunnylee, thanks for this info. Do you live in the Bay Area? I like my doctor but I think I should talk to other doctors too. Thanks!

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I live in Palm Springs area. My main oncologist is Mark Genesen at Riverside Hospital.

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I had a reoccurrence. It was found on the MRI it was very small . It reoccurred after 6 months . I had very small tumors and nodules like yourself. Stage III c also. I believe the MRI will catch it better than a CT scan. But don't dwell on that just go ahead and live day to day . I am still fighting these small tumors.

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Thanks for sharing. I do try not to dwell on it. As I get closer to my follow up appointments I think about it more. I am glad to know an MRI can see better than a CT.

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Just routine schedule until I get into remission.

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Were you having any symptoms that made them want to do the MRI? Or is that just a routine thing your Dr does?

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I was dx with Stage 3C high grade serous February 2005. When I recurred in 2007, my first indication was a new pain deep down in my pelvis. It was different from any other twinges or pangs that I had had. My CA125 started to rise and about 4 months later my recurrence was confirmed with a CT Scan. About 6 months after I first felt the pangs, I had a second debulking surgery (the recurrence was localized to one area) and I underwent 6 more rounds of chemo, this time of Carbo/Gemzar. I've been NED (no evidence of disease) since Nov 2008, though have had a couple of scares. In order to not dwell on the possibility of a recurrence I started keeping a journal of things I was feeling. That gave me permission to let my worries go and focus on the rest of my life. The night before I saw the doctor, I would review it to see if there was anything that was of concern. Most twinges and pangs went away after a couple of days to a week so weren't anything to worry about. In my case, my CA125 has been an exceptionally sensitive number. Having said that, I would not chose to treat to the number, ie I would not immediately jump into treatment with a rising CA125. I my case, I use the CA125 to give myself about a 6 months heads up that down the road I'm likely to be in treatment, so I better go ahead with things like vacations that I many not feel up to while in treatment. It's really hard when you get to your first remission to move on beyond cancer. One of the discussions I had with myself was, if I was fortunate enough to live to be 100, did I want to look back and realize I had spent too much time worrying about something that might or might not have happened, or did I want to say I lived my life to the fullest. It'snot easy to get beyond a cancer diagnosis, but that's our next lesson in life after we get to NED.

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I am a 3 time Ovarian cancer survivor. Your story is uplifting. Cheers to you.

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That's good news to know.

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I'm new to this website and is so glad to find your post. You remission time is amazing. My mom is facing a recurrence now after 2 years with her CA-125 rising and we're waiting for CT scan result. I wish can you share some advise about life style, eating habit, and do you take anything during remission. Any info from you will be appreciated!

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Why are they relying on CT scans instead of PET scans? It's my understanding that PET scans pick up cancer cells better and can better track metastasis. I plan on insisting on periodic PET scans! I will also be discussing immunotherapy and clinical trials for a tumor specific vaccine when I speak with my oncologist.

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I'm not sure about everyone else but my insurance company only approves PET scans with vervain types of cancer. I find that very strange considering I'm Stage IV. But that's what I was told.

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I asked my oncologist for a PET scan. He said he didn't do them for ovarian cancer. I wanted one though but he wouldn't consent go it.

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I'd get a second opinion if I were you!

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Hi Choski, thanks for sharing...so so sorry to hear that, just know that Our God is a God of second, third and forth (etc) chances...He will bring you through this with flying colors ok..you will be healed in Jesus's name 🙏🏽🙏🏽! ! It sounds very scary to all of us..but I tell myself everyday that GOD IS BIGGER than CANCER!!

Today is a very special and blessed day for me, because I had my last of four chemo...I was diagnosed with "borderline tumor, possibly cancer not clear "according to my doc records and test from pathologist...but I had to do four rounds of chemo because they misplaced one of my ovaries and never told me..I found out when I went for a second opinion..

The other doc said he wanted to do the chemo for future protection because of that..Can you imagine the agony, stress and of course the anger I was going through? This was October 26, 2016.. because of my faith and Gods mercy on me, I went thru it with flying colors, all of my tests/scans and numbers have been very good and negative from start to now. God is so wonderful! I just had a very bad and not caring doc...He blames the pathology lab, the lab blamed the operation room and said it was mislabeled when it got to them so that is what caused the discrepancy that I was never told about until second opinion.. WOW !! WOW!! Was all I could say. I m now with the second doctor who is more caring, HONEST and thorough.. My friend, it was only that divine power up above that showed me that revelation for which I'm forever grateful. That same divine power is going to healed you also🙏🏽🙏🏽😊!! Don't worry Choski you will be fine ok, just keep holding on to your faith Gods got you 👌🏽 🌞⭐️😊🌟👍🏽🙏🏽🙏🏽❤️

We are all in this fight together, stay strong ok!!

June7-1981

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Looking for some reasonable alternative methods to prevent recurrence of ovarian cancer, especially nutritional advice

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Why did you have 2 surgeries?

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I was told that I didn't need chemo right now. My oncologist is getting my tumors from the hospital pathologists and confirming with their own pathologists whether their conclusions were correct because there was one place where they said it was borderline and then concluded it was low grade serous. She said she'd have the results in a week or two because it will impact what treatment I receive and since the source of the cancer has been removed and my lymph nodes and omentum were clear she feels like I have plenty of time. Only 1 in 10 people respond to chemo with this type of cancer so I'm not going to put myself through that if I don't have to. Right now, we're monitoring my CA-125 and taking a wait and see attitude. She feels like the surgeon did a thorough job and I might be lucky enough not to have a recurrence. I am almost 6 weeks post-op and seeing the surgeon for the (hopefully) last time next week to make sure everything has healed up okay inside. It was a load off my mind to hear that I am considered to be in remission. Let's hope it stays that way!

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May I ask what specific type of cancer you have?

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Well, that post was a year ago and I decided to get a second opinion. I had stage IIIC low grade serous cell carcinoma. I opted to do chemotherapy with this new doctor, which I completed in September. It was a rough ride with not only the side effects of chemo but I also developed a blood clot in my jugular vein requiring me to inject myself daily will Lovonox. In between chemo sessions, I also had to inject myself with Neupogen in order to get my WBCs high enough to get the next treatment. I'm still a bit anemic. In any case, I'm finished with chemo and, as of my last oncologist visit in December, my CA-125 was 7 and I was declared to be clinically free of cancer! I now take Tamoxifen 20 mg. daily. I'm so glad I found Dr. Palchak (Pismo Beach, CA)! He is a true humanitarian and is 1 out of only 3 private practices allowed to be a member of the National Cancer Research Program (NCORP) in the state of California. Most oncologists are affiliated with hospitals and receive their medications at a discount while charging their patients full price. Dr. Palchak finds this to be unethical. He is a wonderful human being, he lives a simple life with his wife and dedicates himself to helping others. He is capable of getting people into clinical trials in as short a period of 2 days! In any case, I am currently cancer free and hope to remain so for many more years!

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Your story is inspiring! I’m so glad to know that you found a wonderful oncologist! To me that is one of the most important things while dealing with this disease.

Best wishes on staying cancer free!

Jules

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Both my surgeon and oncologist told me from the beginning since I had late stage ovarian cancer,high grade serous, it was very hard to treat and would return. That's what makes us all feel like a ticking time bomb. It's really hard to live one day at a time, but we haven't much choice. Just know that Jesus walks with us every step of the way. That's my comfort.

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I have read through all your stories. Each one of you are my hero. We aren't survivors we are warriors.

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I understand your fear of reoccurrence. I was diagnosed with Stage 3B Ovarian Cancer Oct. 31, 2014. At the time, both lungs had embolism which ruled out the standard debulking and staging g prior to chemo. I had ascites and 3 liters were drained from my abdomen. My CA 125 was 500 and I was started on Carbo/Taxol. I had an optimum surgery in Feb. 2015 and chemo until June 2015. My CA 125 was 4 and I enjoyed remission until this month.

I have an excellent surgeon and oncologist who have been very agressive with 3 month exams, CA125 and 6 month CT scans. My CA 125 doubled from a 4.5 to a 9 and while this number is well within the normal range, my surgeon immediately ordered a CT scan which showed a very small tumor on my aortic lymph node. The lesion is too small to biopsy, so a PET scan was ordered...My first such scan. The PET scan not only identified the lymph node but also a small tumor on my liver which did not show up on the CT. I am not symptomatic since the cancer is very small. Due to location and size, my surgeon referred me to their cyberknife doctor. I will begin this procedure this week for the removal of tumors and my Oncologist has suggested the same treatment with Carbo/Taxol and an addition of Avastin. He has warned me that chemo will be harder this time (I can't imagine that) since I am pretty beaten up by the previous Chemotherapy!

Initially, I was in constant fear of a reoccurrence, but after a few months out of treatment, I began to live my life which is why I went through the treatment in the first place!

I am certain that I have the very best care available and complete faith in my doctors! This is the number one thing!! Second, living with Ovarian Cancer is extremely difficult. It's okay to be scared! Faith works for me...I give it to God, my amazing family and doctors which helps to ease my fears.

Also, my doctors are incredibly kind and honest. I leave it to them to let me know when my fight is done...But for now I will fight on for another remission!!!

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For me, some of the symptoms or recurrence were pain similar to that of a UTI but without the burning sensation when peeing. Occasional sharp pain in my lower right back, associated with bloating and burping. Lots of burping. A Ct confirmed there was a mass where the ovary should have been. My CR125 doubled but dr and nurses said that wasn't reliable. Deep inside I suspected it was back even though at the time I did not know this cancer tends to recur. Listen to your body and do not be afraid to ask your doctor, but do not let fear take hold of your life.

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I was diagnosed with stage 111C cancer with a large mass that ruptured. I had surgery july 2015 and have had some of the same thoughts that you are having. Can't remember what my ca125 was at the time of surgery but it was like yours very low. I try not to dwell on what might be but to just enjoy every day that I have been given. I wish you the best.

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I hope this will be helpful so that we don't pass on misinformation. I'm sure that individuals are right about their situation, but there isn't a "best" radiology test in general for ovarian cancer at this point.

In the debate of MRI vs. CTs vs. PET scans it isn't that one test is best for all of us so we need to be careful about making it sound that way. There is research to help us understand this. A good study is in the American Journal of Roentgenology, (Iyer & Lee, Feb 2010).

"For lesions indeterminate on ultrasound, MRI increases the specificity of imaging evaluation, thus decreasing benign resections. CT is useful in diagnosis and treatment planning of advanced cancer. PET is not recommended for primary cancer detection because if high false positive rates."

At different points in our dx and treatment the different tests make sense. In my case I used to get MRIs when I was first diagnosed at 29 and had borderline tumors. They could tell more easily is they were just cysts or more solid tumors when it wasn't clear if I would recur. I got a PET after chemo when after 5 surgeries we knew I had lots of adhesions and some calcification and we wanted to see how much "active disease" we could see. Remember that inflammation can glow on a PET too so it can give false positives. Today with cancer for the 4th time I am in a trial and get CTs every 2 months now. It is the best to compare every month. We know basically what's going on in there and we can easily match sizes and locations of tumors.

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I was diagnosed Dec 2015 with Stage 4 Uterine cancer. I had surgery and carbo/taxol. I was in remission a year. Then my CA 125 went up from about 6 to 19. We had a CT scan and it confirmed. Lately I am just trying to figure out how life would be to mostly just stay on treatments. I really don't have a good grasp of the whole situation, but I think I will ramp up. I do have a nice social worker through Shanti in San Francisco. Now that I see that it could be likely for me to have recurrences, I want to learn so I can strategize more. This is the first time I have felt like there were specific choices I could make. I think my other options were just the standard. I hope it helps to hear... Thanks!

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Hi Kristy,

My Oncologist had me have scans and x-rays, mammograms and tests once a year. I know this wouldn’t work for every one, but we were able to stay ahead of it, to the point that after sixteen years I am writing to you. I do yoga, exercise twice a week, eat healthy and get plenty of rest. I try to keep stress at bay. This doesn’t mean that I don’t think about recurrence. My last recurrence was a very sore shoulder. It was bone Mets. I had a biopsy that revealed it was stage 4. I just have to thank God that I have as much time as I have had.

Be diligent, pay attention to your body and always check out symptoms asap. I wish you all the best on your journey. God bless.

Aire

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My dr said the word WHEN it comes back!!!

Wow your ca125 was under 35 and found that scares me!!! Wow

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"when"... A very scary word. My gyn/oncologist threw so much of that kind of thing at me at the beginning. I finally realized that it is what she sees and deals with every day so it's normal to her. She is not quite the people person, but great with a scalpel and cancer knowledge and I'll take that first.

Going for session 4 on Thursday, so trying to concentrate on that for now.

The "when".... I would try to not worry (too much) about that until actually occurs.

* Don't borrow trouble.

*One day at a time.

*Etc. (see Pinterest for more lol)

Hoping "when" doesn't occur; or it is at least a very, very long way off!

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