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Question regarding suspicious cysts and cancer
THawk
22 Posts
How many of you who are diagnosed with ovarian cancer started with a suspicious cyst?  
77 Replies
KathiR
45 Posts
In retrospect I wish I had placed more importance on prior cysts and understanding of ovarian cancer.  About 10 years before I was diagnosed at Stage 3 I had experienced two things.  One was a cyst in my right ovary that showed up during an ultrasound.  I was told, at the time, that this wasn't of concern and they often would disappear as quickly as they appeared.  Another ultrasound six months later showed my right ovary clear. So I thought nothing of it and being very naive about ovarian cancer, at that time, it never occurred to me to ensure my GP kept that under surveillance.  About a year or so later I experienced some spotting post menopause.  That uncovered some uterine cysts that were removed through D&C.  These occurred again about two years later.  In both cases the cysts were biopsied and I was advised of the all clear.  And once again, I didn't tie any major significance to them assuming my GP would keep an eye out for any ensuing issues.  I had no further problems until five or six years later when the first "symptoms" of ovarian cancer begin to manifest.  At the time bloating, some bowel issues, lower back pain...nothing severe and all put off to aging and dietary problems by my doctor.  No one, certainly not me, thought to connect the dots between previous cyst issues and these "symptoms". It took three more years of consistent discomfort for my GP to order a CT, where a malignant tumour (high grade serous epithelial cancer) the size of a grapefruit was detected.   Had I had greater awareness of ovarian cancer I think I would have advocated strenuously for proper investigation of my symptoms.  Were the ovarian and uterine cysts precursors to development of that primary tumour I'll never know.  But I can't help feel there was a link that slid by my medical support.  
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.  
THawk
22 Posts
Thank you for sharing.  I will be talking to my doctor today.  I am going to ask for the CA 125 test as well as the BRCA gene testing.  My mother had to have a full hysterectomy at 23 (right after she had me) due to cysts and some complications.  My biggest frustration is how everything is seemingly brushed off and made into a "normal occurrence"   and then all of a sudden its too late.  I just had surgery for a thyroid tumor.  I also have to have both breast implants removed as they are suspicious of BIA ALCL.  Now, ultrasound found a solid complex cyst on my ovary.  The craziest year ever!  
 
LaPhilly
3 Posts
Hi everyone.  Pre diagnosis, I was told could be diverticulitis (to account for digestive issues and pains).. was told to do keagals to help with light bladder leaks.   As pain increased, new symptoms presented, and I looked absolutely pregnant, I was sent to emerg.. now either acute diverticulitis or ovarian cyst.
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!  









 
KathiR
45 Posts
Hi LaPhilly‍ 

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.
http://noca.convio.net/site/TR?fr_id=1543&pg=entry&s_locale=en_CA 

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.
 
LaPhilly
3 Posts
Thank you Kathi.  I opened the link, and will register for the walk.  And, I registered in the Ovarian Cancer website as well (discovered that by accident earlier this morning) What is a virtual walk? Does that mean it’s on Sept 13th, but we don’t gather, for example, at 9a.m.?   If I am experiencing chemo side effects (the 13th is right after potential 4th of chemo) can someone else else walk in my stead? 
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
Laura

 
Laika57
730 Posts
Hubby's cyst on the pancreas turned into cancer over 6 years i think. Despite a CT every 6 months to monitor it. IDK if they were looking in the wrong place, or it just didn't show yet, but they pretty much kept telling him there was no change - right up until he started turning yellow from the cancer obstructing the biliary duct.
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. 
Elsie13
1535 Posts
THawk‍ , I haven't read through this discussion.  I hope to do that later tonight or tomorrow.  
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? 
THawk
22 Posts
Thank you for all the replies.  I am currently waiting to see my gynecologist.  The ultrasound report says one is a some cyst and the other is a complex cyst.  It measures 3.5cm.  Oddly enough the left one sends me more discomfort and pain then the right (complex). 
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.   
 
Samiam
37 Posts
THawk‍ you have been through so much, I feel tired for you. 
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. 
stay safe.
Sandy
 
THawk
22 Posts
Sandy,
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! 

Teresa
Elsie13
1535 Posts
 This is about new testing for ovarian cancer:
https://montrealgazette.com/news/local-news/grant-will-help-muhc-researchers-move-cancer-test-to-clinical-trial-stage

Dr. Gilbert is one of my doctors.
THawk‍ , SamiamLaPhilly‍ ,   KathiR‍ , Laika57‍ 

Sandy, Teresa, hope the surgeries go well!
Anga
26 Posts
Last fall complex cysts were found via ultrasound after 9 weeks of significant back pain, nausea, heavy bleeding. We started with an IUD but noted the cysts only grew. My CA125 came back elevated before Covid shut down the province. I requested a biopsy, ObGyn said it would be a Laparoscopy. Do you know why that and not an in clinic biopsy? The wait list for our hospital is long. She told me they have no idea when they can get back in. Last week's blood work, my CA125 has increased. My family doctor said this should up my priority, but with no staging, will it really? How high does that number go?
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.
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JustJan
743 Posts
Anga‍ 
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. 
KathiR
45 Posts
Anga, 
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.  
Elsie13
1535 Posts
Anga‍ , Glad you have found cancerconnection. I agree with JustJan‍ and KathiR‍ . I feel that you need to see a gynecological oncologist. (I don't have any medical training, this is what feels right). 
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 
 
Elsie13
1535 Posts
Anga‍ , this article gives a slightly different number:

"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."
https://www.medicinenet.com/ca_125/article.htm

KathiR
45 Posts
Anga, 
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. 
Anga
26 Posts
Thanks for sharing everyone. I'm just seeing all the additions now :) I guess finding out more about my Gyn (if she is a Oncology Gyn) is the first step. If not, I will call my Dr back next week and ask to be rereferred. Does anyone have names to request in the KW region by chance? Is that alright to ask?

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.
KathiR
45 Posts
Anga‍ ....what does KW stand for?  Not sure where your region is and not familiar with the KW reference.
ashcon
1926 Posts
Hi Anga
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!

 
Anga
26 Posts
Thanks, that totally makes sense (no specific doctor data). I saw Hamilton Health Science has Oncology Gynecology, but GRH is right here in town 👍 My Gyn appt is not until mid Oct. Would I ask her to refer me? 
Thanks again. Have a good night everyone.
ashcon
1926 Posts
Hi Anga
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? 
Anga
26 Posts
Thank you Ashcon,
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.
JustJan
743 Posts
Anga‍,
 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. 
Anga
26 Posts
JustJan‍ , I can't thabk you all enough. Today I learned about RMI score and can see why I have every reason to push for more. Hamilton Health Science is the centre I would go to. Left messages at both offices, made my ultrasound appointment earlier in Sept.. Progress is in the works!! Promise to update.
Anga
26 Posts
Hello Again 👋
I have phone appointments with my family doctor AND ObGyn on Monday. I want to know what to request and not screw this up! In my region, Hamilton Health Science would be the closest Oncology Gyn/centre.

With just a second further elevated CA125 & 3rd confirmation of cysts... Already on wait list for laparoscopy which will be into next year locally. This has been a year in the works already.

Do I sound reasonable, requesting transfer to that centre at this point? I am unsure of the usual process and hope for some input by those that know. I obviously hope to be taken seriously, in the midst of this Covid delay on our healthcare system already.

Input please, knowledgeable crew ;)


Anga

 
KathiR
45 Posts
Anga‍ 

Progress. You've got appointments with both.  Now, how to advocate for yourself, so few tips from my own experience.
1. Don't burn any bridges with your existing medical support.  Think of it that they are supporting you as best they can based on their own experience and knowledge and do have your best interests at heart.  So approach in a way that doesn't imply you don't appreciate their efforts.
2. What you really want, at this point, is a second opinion on the course of diagnosis of your situation. You may well not have cancer or even a precancerous condition that would warrant accelerating any activity but at least having that validate their recommendations would certainly put your mind at more ease.    
3. Be fact based and not emotional in your request.  I would say something like....given this has been going on for a year now, and my CA125 is beginning to trend up, along with (add in any symptoms form the list below that might be evident if you have any) and understanding that if this is cancer or even leading toit, early recognition is critical, I would appreciate you arranging a consultation with a gynecological oncologist at the Hamilton Cancer Center to confirm there is no need for urgency beyond waiting until the new year for the laparoscopy. 
4. Ensure you include a timeline....like this (meaning September) month for that to happen. 
I've never had my GP refuse a request for a second opinion or specialist referral so hoping its an easy process for you.
In the meantime, I've copied and pasted the list published by the World Ovarian Cancer Coalition. If you are experiencing any of these symptoms then add in to your request to increase sense of urgency and agreement. 

Common Symptoms of Ovarian Cancer Include:

BLOATING - Increased abdominal size / persistent bloating that doesn’t come and go
EATING COMPLICATIONS - Difficulty eating / feeling full quickly
PAIN - In pelvic and/or abdominal areas
URINARY SYMPTOMS - Urgent or frequent urination

 Occasionally, there can be other symptoms, such as:

  • Changes in bowel habits
  • Abnormal bleeding – Any post-menopausal bleeding should always be checked by your primary health care provider or doctor.
  • Extreme fatigue
  • Unexplained weight loss
i hope this is useful to you. If you want to explore OVC more, I highly recommend the World Ovarian Cancer Coalition site: https://worldovariancancercoalition.org/

Hoping though that in the end your cysts turn out to be benign.  If not, rest assured there is an army of us out there to help support you; on this site, on Ovarian Cancer Canada's OVdialogue, and possibly a live support group in your area.  Use them all as resources if you need help and keep us posted.
Anga
26 Posts
I cannot thank you enough!! 
KathiR
45 Posts
Anga‍ 
Good luck today.  We'll be looking for you to confirm your success in your request.  

Cheers for now, 
KathiR
Anga
26 Posts
Absolutely :)
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