Posted by KathiR on Jun 5, 2020 7:47 am
Definitely support advocating to have appropriate investigation of cysts and even if benign, then ongoing surveillance for recurrence and not wait for symptoms to develop.
Posted by THawk on Jun 10, 2020 7:27 am
Posted by LaPhilly on Jun 15, 2020 3:30 am
6 hrs later, the ER doctor told me that it was definitely not diverticulitis. Mass (we have named it Fran) is size of small watermelon. Was pressing on my bladder. Keagal schmeagal. This was April 21, 2020. More exams, doctors, and biopsies... Diagnosis is High Grade Serous Carcinoma, stage 4. Just had my first chemo last week. The cyst appears to be half fluid and half solid.
Most recently I have wondered why there isn’t a screening program, similar to mammograms. All my routine “time for your pap”, FOBT, and mammograms were fine. A routine x-ray (like a mammogram), might have caught this in an earlier stage. Until the mass could be seen via x-ray and also a CT scan, I have never had a CA125 blood test. Didn’t even know it existed. Otherwise I would have proactively been requesting that annually.
KathiR, kudos to your awareness raising. I have yet to find a support group in Guelph, or even an annual walk.
THawk... my mother also endured this similar diagnosis (20+ years ago). Unfortunately, the nature of her diagnosis was that she did not have a mass that could be removed, and debulking surgery was not an option. She gifted me with many strengths that I draw upon now.
I would like to see every poise or depends product have a teal ovarian cancer ribbon printed on their packaging. Turned out, my “every woman may experience “ laugh-cough-sneeze moments were trying to tell me something. No one questions going for a routine mammogram without having a lump. Can we get there for Ovarian/Uterine screening too?! Raise awareness.
...or is it just my 3am insomnia talking!
Posted by KathiR on Jun 15, 2020 2:00 pm
Oh my gosh I feel your frustration. And so do so many others of us. The primary reason this cancer is usually caught so late is the lack of an effective screening capability. Unlike many of the "popular" cancers, ours has been so underfunded that progress in development of screening and treatment has been very slow. Ovarian Cancer Canada raises significant funds for research and awareness through its annual Walk of Hope in September. And it's been an important lobby group and advocate, such that the current government committed $10,000,000 to our cause last year; the first ever government funding towards OVC research. But it starts with education and awareness and that's tough when studies have shown that the majority of family practitioners know little if anything about the disease and with symptoms so vague they can waste precious time following the wrong paths, such as occurred with you and, in fact, me too. Add to that a general ignorance on the part of the public. unless the disease has touched them in someway.
Ovarian Cancer Canada has probably done the most of anyone to raise awareness of the disease among the general public and provide support to ovarian specific cancer patients and survivors. I really suggest you register with them. They have an online community called OVdialogue you might find very helpful. And,by the way, Ovarian Cancer Canada does hold a Walk of Hope in Guelph. This year it is September 13, although being managed virtually. This might be an opportunity to meet other survivors in your local area. Hope this URL connects you.
Hope this helps and wish you the best. This is not an easy disease to live with but there are lots of us out there to help support you. Don't ever hesitate to reach out.
Posted by LaPhilly on Jun 15, 2020 4:13 pm
New post-chemo side effect present this morning.. rash. Day 10 since chemo. I called my assigned nurse. Could be delayed allergic reaction to the chemo. I guess I better continue to read about the other possible side effects...Eg 1% of patients experience locust swarms. If this occurs on a Monday, contact your support team.
I also just retired, 32 years in Police 911/dispatch where I was trainer/auditor. I think if I hadn’t retired, I might have shoved my symptoms aside (large abdomen+age=menopause). In hindsight, I think I also normalized my symptoms.
Thank you for encouragement
Posted by Laika57 on Jun 15, 2020 5:11 pm
His surgeon told him he should have had the whipple (removal of part of the pancreas, gallbladder and intestine) right when they found it, as those cysts usually contain a minute start of the cancer. (As per hubby's research way in the beginning, there were no statistics on that yet, and survival rate of the surgery was not all that great either. So no point arguing over spilled milk).
anyhow. Not sure if/how this relates to ovarian cancer, but it certainly can't hurt to talk to a(nother) specialist.
Posted by Elsie13 on Jun 15, 2020 5:29 pm
At age 60, I was diagnosed with large ovarian cysts. I cant remember what the first ultra sound showed; the larger one was 12cm? Anyway, they said it might be cancer, and once I'd had my hysterectomy they would know if it was cancer.
Yes, it was ovarian cancer, and I have a feeling they were fairly certain of that before my surgery. The pathology report showed that the larger cyst was 17cm. They found two types of cancer cells, adenocarcinoma and clear cell.
Can you tell me please, what size cysts you have?
Posted by THawk on Jun 15, 2020 7:28 pm
my mother had a full hysterectomy at 23 as she had cysts that burst and somehow caused more serious problems. I am a little unclear as to her details, but she has said that it was ovairan cancer. I'm slightly sceptical as she was 23.. and my mother tends to over embellish her health issues.
My plan is to meet with my gynecologist, as for the CA 125 and BRCA gene tests. Then I'll decide what to do based on that. I'm 43 and not sold on needing a full hysterectomy. I do have enough discomfort and pain to warrant it, but not excited about early menopause.
I have had a terrible year. Two other surgeries already (second on wednesday). I had a thyroid tumor, 4cm infiltrating a nerve. I was in so much pain. On wednesday I will be having both breasts removed as I had a recalled implant which has caused problems and might test to be BIA ALCL. I found these cysts when doing an ultrasound to investigate why all my lymph nodes were swollen.
I have had enough! Thank you all for sharing.
Posted by Samiam on Jun 15, 2020 9:17 pm
Looking at it all is likely very overwhelming. Is it possible to break it down into smaller chunks?
All the best with your surgery, is it this wed the 17th? If so we will be surgery buddies!
all the best I hope its relatively easy with a quick recovery.
Posted by THawk on Jun 16, 2020 6:58 am
Yes, I go tomorrow for my surgery. I will be free and clear from these cancer causing toxic implants. Flat, but I don't care. I just need to be healthy.
What is your surgery? I wish you a speedy recovery.
I have broken everything down along the way. It has certainly been a difficult 2020. It is interesting, in the beginning I kept waiting for a Hollywood Dr. House to swoop in and quickly diagnose me. But rather in reality I am dealing with 4 different specialists / surgeons. Recalled breast implant- breast surgeon, thyroid tumor- Head and Neck surgeon. Lung nodules - pulmonary specialist. Now ovarian complex cyst- gynecologist. It is crazy. I am thankful to have a job that I am able to be on short term leave, as all my time has been appointments, bloodwork and tests and already 2 surgeries. The hard part is that my GP family doctor is not very attentive or knowledgeable. She is great at giving referrals, but that is about it.
I wish you well tomorrow. Please let me know how you are healing! We will certainly be sitting on our computers!
Posted by Elsie13 on Jun 16, 2020 2:48 pm
Dr. Gilbert is one of my doctors.
THawk , Samiam LaPhilly , KathiR , Laika57
Sandy, Teresa, hope the surgeries go well!
Posted by Anga on Aug 21, 2020 8:47 pm
He mentioned some women go to the US to get done privately and that it is still an option, with a medical exemption. Going to the US abounds crazy to me right now. I'm a mom to young girls and can't imagine letting this go on while we await a second wave. Thank you for making it this far if you are still reading. Our families are not close, no one is in our bubble, it's going to be a long rest of 2020.
Posted by JustJan on Aug 22, 2020 9:24 am
Hopefully I can provide a little
perspective for you. I believe the only way to biopsy a cyst on an ovary is to do it laparoscopically. From my understanding It is not something that is done without having surgery. CA 125 can be an indicator of cancer and if the number is rising then your doctor is right, it should definitely move you up on the priority list. Staging can only be done following surgery and pathology and does not impact your priority for initial surgery. Perhaps your physician needs to contact the gyne surgeon with the new information? I would have my family doc put some pressure on the gyne doctor to get you seen and into surgery ASAP. Unfortunately, genetics testing will likely only be done following a diagnosis of cancer unless someone in your family has already tested positive for a cancer gene mutation.
I’m sure Covid is only adding another level of complexity but know where I am urgent cases are definitely being seen and operated on.
I hope you can get some answers soon as I know the waiting is terrible and riddled with anxiety.
Posted by KathiR on Aug 22, 2020 11:54 am
I can only imagine the anxiety you're feeling and you're absolutely right in expecting some action. JustJan has already replied with some excellent insights for you. All I can really add is to encourage you, if not already the case, to request referral to the nearest Cancer center and into the care of a gynecological oncologist. Your symptoms warrant it. With all due respect to GP's and OBGyns, gynecological oncology is its own specialty.
Stay strong and praying for you that your diagnosis is not ovarian cancer. But if that's the case, there are lots of us here to help support you through your journey. If you wish to learn more about the disease and connect with another community solely represented by OVC patients and survivors, please look into registering with Ovarian Cancer Canada. Their website offers a lot of information, including very helpful booklets and videos you can access on line. https://ovariancanada.org/ And their Ovdialogue site provides direct access to a national community of over 600 women with Ovarian cancer. https://ovdialogue.ovariancanada.org/
I am a survivor of almost four years now, and while my cancer will never be cured I am fortunate to be in the hands of some incredible oncologists who have been able to stabilize my cancer since a recurrence two years ago. But over the course of my own journey I have met many many long term survivors, some as much as 20 years and more. There is hope.
Please feel free to reach out again is there is anything more you need.
Posted by Elsie13 on Aug 22, 2020 5:37 pm
In my case, the family doctor found that I had large ovarian cycts in August 2016. She referred me to gyne-onc. As I remember, my CA125 was a bit elevated, but not super high? I had surgery the third week of November that year, and that's when they told me it was ovarian cancer.
"Results of the CA 125 test are measured in units per milliliter (U/mL). The normal value is less than 46 U/mL." https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295
Posted by Elsie13 on Aug 22, 2020 5:43 pm
"What is the normal range for CA 125?
The normal values for CA 125 may vary slightly among individual laboratories. In most laboratories, the normal value is 0 to 35 units/ml."
Posted by KathiR on Aug 22, 2020 5:59 pm
Elsie13's information does reflect the standard here in Ontario. 0 to 35 is considered normal range. Anything above might give rise to investigation. However, it's important to understand, while the CA125 is the only diagnostic test we have available, it is very unreliable. Hence doctors tend not to look at individual scores but a trending over time, and only for purposes of a trigger to consider further investigation. My CA125 has been rising over the past few months...19 to 51 to 69 to 135 to 169. All slow and steady and confirmed by a CT that my recurrence that had been stable was beginning to progress ever so slightly. (note, I am on a clinical trial so I have a CA125 every month and a scan every 2 as part of the trial) Then three weeks ago my score suddenly shot to 440, which you would expect would raise some eyebrows. But I had also just had a scan and lo and behold there was no evidence of any further progression. I'm actually stable again. I've had friends who's scores have been rising, but scans show no cancer. But they are on medications that cause inflammation and inflammation, among other things, can skew a CA result.
Posted by Anga on Aug 22, 2020 6:25 pm
I really appreciate the input. Thank you. Is a nutty few weeks, with school starting back up. Due to my situation, mine are staying home for remote learning. I hope to somehow keep my job through this. One day attack time.
Posted by KathiR on Aug 22, 2020 7:01 pm
Posted by ashcon on Aug 22, 2020 8:04 pm
I live in the KW area (Kitchener Waterloo) and had my treatments at Grand River Regional Cancer Centre.
Unfortunately we don't share Dr's names on this site as each person has their own experience, perspective and opinions about any given doctor. And any referrals provided here may be counter intuitive to what your family doctor thinks is best for you.
I believe it's still best to get referrals from your existing sources, like your family doctor.
Once you get a referral, you can check out what others say on the RateMDs website. https://www.ratemds.com.
But, like any online review, take it with a grain of salt!
Posted by Anga on Aug 22, 2020 8:17 pm
Thanks again. Have a good night everyone.
Posted by ashcon on Aug 22, 2020 8:59 pm
My brother-in-law had his cancer surgery n Hamilton, and he lives in Guelph, so it's not unusual to travel outside of one's Health Unit area. I am just worried that things are backed up EVERYWHERE, no matter where you go.
And I'm with you about not being too keen to go to the US.
Can you find out online, or through a call to your referring doctor's office, if that ObGyn you are being referred to is an oncology ObGyn? I have a fearful feeling they are not, as it's usually only oncology doctors who refer their patients to other oncology doctors, and family doctors just direct their patients to "specialists".
I am also worried that once you see that ObGyn in October, and if you are referred to an oncology ObGyn, that it will be another unknown number of weeks or months before you see them.
As the others have suggested, it would not be untoward to start rattling some cages. The squeaky wheel gets the attention as long as you are professional and respectful.
Can you get on a cancellation list with the ObGyn?
Posted by Anga on Aug 23, 2020 6:38 am
I will be in touch with my Dr this week to request an appt with an oncology gynecologist!! I didn't realize that would be the next step. Already learning here. He may wait for the Gyn to refer me, which worries me a little. I will push for it though. And more reading/learning for today.
Posted by JustJan on Aug 24, 2020 8:45 am
I agree with ashcon that you absolutely need to push for gyne oncologist as they have the expertise to deal with suspected cancer and should approach your situation with the right level of priority.
Please let us know how you make out.
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