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Suspected Advanced Ovarian Cancer

Suspected Advanced Ovarian Cancer

Posted by cinmngrl on Oct 31, 2019 12:08 pm

I'm thankful to find this site and am looking for others to talk too about this.
I am waiting for my formal diagnosis which should happen in 5 days.  I've started to hate weekends because of the delays they seem to cause in this whole process.
What I know, my ovaries are huge, I have what appears to only be a small amount of ascites given the size of my belly (I definitely look pregnant).  My recent CT scan has identified two additional tumours, one small which is next to my spleen, and one a bit larger below my diaphragm but pushing against my liver.
I am terrified.  My surgery was called off given the risk of dealing with my diaphragm.  Providing no new information happens as a result of my biopsy chemo is scheduled and should begin next week to shrink my tumour before surgery can be rescheduled (probably 4 months 1 full day of chemo every 3 weeks).
I've made the mistake of researching too much and feel like I have a death sentence and bounce between I'm going to kick this in the a$$ to I won't even make it to my first treatment.

If this sounds similar to anything you are going through please let me know how you are doing.  There are so many strong people here and I know this will help me talking to you about it.
Thanks

Re: Suspected Advanced Ovarian Cancer

Posted by Kims1961 on Oct 31, 2019 8:23 pm

cinmngrl‍   So glad you posted....although my diagnosis was breast cancer - I share your frustrations of weekends...then there are the LONG weekend...UGH!  My first chemo was right before Christmas and you can only imagine getting in touch with anyone during the holidays!!  Not that i begrudge holidays to anyone, but I really wish there was a 24 hr line where we can ask questions and get test results.

I found venting/sharing here really helpful.  I tried not to use Dr Google but I know it's hard.  I had to remember that before I went down those "dark paths" of what if..., i should wait for all of the info.  That being said, I read a great article that going to the "dark side" can be helpful - it helps for us to prepare for the worse  - just don't stay there.   This was true for me - I started to prepare my end of life plans ( my husband doesn't know any of our passwords!  lol...) . This helped in a weird way - I started to problem solve and felt like i had regained some control.  

Please know that this part of the cancer journey is the hardest - the limbo - the waiting - the weekends!

Glad you reached out.  Please keep us posted on how you're doing.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Suspected Advanced Ovarian Cancer

Posted by Faye on Oct 31, 2019 9:13 pm

cinmngrl‍ 

I am glad you have reached out to this forum. I do not have ovarian cancer so hopefully someone who has a similar diagnosis will respond.

I had a stage 3 lung cancer diagnosis so kind of know the helpless feeling you are going through.
It is so hard to cope when you are in this limbo stage not knowing what is going to happen.
I don’t think there is anything I can say that will decrease your anxiety at this time except as you get answers you do learn to accept and cope with your diagnosis. 

This isn’t easy but I want you to know that there is so many new cancer treatments so please don’t give up hope before you have all the answers to your diagnosis.
We are all here because we are all affected by cancer and we will support you wherever we can.

I hope you soon have the answers needed for your cancer team to formulate a treatment plan.
When you need to vent or encouragement please come back and post.

Faye

Re: Suspected Advanced Ovarian Cancer

Posted by Dobergurl on Nov 1, 2019 11:09 am

Hello cinmngrl‍ 

I feel your panic and frustration.  I was diagnosed with Ovarian cancer in May 2019. I could not understand how I could develop ovarian cancer when I am fit, healthy, two perfect pregnancies and never had a bad period in my life.  I am stage 3B low grade serous OC with a borderline variant, which is a rare form.  My subtype typically effects young women in their 20's, 30's and early 40's.  My daughter is in her 20's which scares me.  Currently I'm in the midst of chemo, had my major surgery in July.  Like you, I also had widespread cancer throughout my abdomen with spots under my diaphram.  Ascites is really common in OC.  Just want you to know there are many treatments for Ovarian Cancer, many depend on the type you are diagnosed with.  Lots of women with advanced disease are living 5+ years, with chemo, hormone blockers, MEK inhibitors and so on. 

Where are you located?  I'm in Calgary and also own a home in Vancouver so I travel between these two Cities a lot.  If you want to chat, I will be happy to share everything I know.

Once you get your diagnosis there are a number of excellent FB support groups for ovarian cancer. Some are for all forms, others are grouped by subtype.  It really helped me to connect with other women who have gone through or are on the same journey as I am on.  Also, I note that there are not too many ovarian cancer patients on this site, so for OC-specific info it's not the best.  There are 7,000 women on one general OC site I belong to and 500 women on my low grade OC site.  However, for general information on living with chemo, side effects, navigating the Canadian cancer system and so on, this site is great.

All the best,

Catherine (dobergirl)
 

Re: Suspected Advanced Ovarian Cancer

Posted by Elsie13 on Nov 1, 2019 11:19 am

cinmngrl‍  I had ovarian cancer.  I had two large ovarian cysts and the larger one was a 17cm oval shape. They told me they wouldn't know if it was cancer until after my surgery.  (I think they knew, or were mostly certain that it was). So the evening just after surgery, the young resident told me they'd found adenocarcinoma and he said something about bad endometrial cells. So I thought I had two types of cancer.  Well I looked at Dr. Google which is of course a very bad idea.  I thought my 5 year survival rate was 12%.  Try to search only reputable sites like cancer.ca and I like the Mayo clinic site.  
      So 4 weeks after surgery, end of 2017, I got my pathology results. I had Stage 2 Ovarian cancer, they said, adenocarcinoma and clear cell.  I did not have endometrial  cancer, after all.  So I had chemo and radiation and now I am No Evidence of Disease. So I know waiting for results is terrible, but try not to get ahead of yourself. 
You might want to look at: https://cancerconnection.ca/discussions/viewcategory/72   but remember that every cancer is different, every patient is different.
You have a dog?   https://cancerconnection.ca/groups/home/43 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Suspected Advanced Ovarian Cancer

Posted by PinkCarnations on Nov 1, 2019 11:36 pm

Hi cinmngrl‍ .. I'm sorry you have to suffer through the waiting and the unknown. This waiting is definitely gut wrenching!

I also have ovarian cancer, and had a 21cm tunour growing from my left ovary. 

My case is different from yours as I don't have any spleen or diaphram involvement. I did have a small amount of ascites and a swollen liver.

At the moment, I have had surgery in early august to remove the tumour, which was removed intact. I also had an omentectomy and BSO. There was mention of a possible ileotomy, but thankfully it wasn't required. Tomorrow will be 2 months since my surgery, and I am yet to get a final pathology report without addendums! I  live in Ontario and feel like i've been left in limbo while my pathology went to Vancouver. Apparently my pathology is confusing some specialists and they are now searching for any other cancer. I've had to have a mammogram because it was found that I had strong ER+ and PR+ staining. The mammogram has come back normal. (thankfully) Last week I had an MRI at 1am in the morning.and yesterday I was told that there was something with my bones and needed to do more blood work. 

And.. the wait continues!!

Anyways.. I went back to work in mid September and it was the best decision I took. 

I wish you all the best and hope you don't have the long wait that I am suffering. 

Re: Suspected Advanced Ovarian Cancer

Posted by Elsie13 on Nov 2, 2019 1:27 pm

PinkCarnations‍ My goodness, you have so much going on, and your pathology went across the country to Vancouver!  Well you seem like a person who can look on the bright side (as well as the other side?) and so yes, the normal mammogram is a good thing and going back to work likely keeps your mind off the long waiting times.  I do hope you get some answers soon. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Suspected Advanced Ovarian Cancer

Posted by cinmngrl on Nov 4, 2019 11:13 am

Thank you everyone for sharing.  It is helpful having people to talk too.
I actually received the results of my biopsy on Friday which came back unusual, which I'm starting to think is the norm these days.
They now don't believe the ovarian cancer is the primary source so I'm heading in to have a colonscopy and upper endoscopy in a few days.  So at this point months have gone by, they don't know what it is and I haven't started treatment.  I have no symptoms other than a huge belly and now some pressure from the additional tumors in my side.   I am really trying to stay positive but each day has its ups and downs.  Thankfully I do live near Toronto so we do have lots of great hospitals but I hope they figure it out soon....

Re: Suspected Advanced Ovarian Cancer

Posted by ashcon on Nov 4, 2019 11:36 am

Hi cinmngrl‍ 

Good to hear from you again (I've been watching your story unfold and am cheering you on!)

Glad to hear you received the biopsy results, though I know you wish things were more definitive.  The one thing I learned - and that you're probably discovering by reading others' stories and experiences on this site - is that a cancer diagnosis and treatment plan rarely (if ever) follows a straight line or path!
The good news is that our doctors know this little quirk about cancer, and they know that its treatment is not a "one size fits all".  So they take the time to do many tests when things aren't clear cut to make sure they set up a plan that works for treating YOUR cancer.  And you are in a fantastic geographical area (GTA) for having access to some of the best in the land!

If your primary cancer is somewhere else, I wonder what type of cancer cancer metastasizes to the ovaries? Or are they thinking that you may have more than one primary cancer?

Please keep sharing your updates updates as they unfold.  You are probably helping some "quiet" folks out there who are reading and absorbing what you are saying, versus posting themselves.  So please know you are helping others!
Good luck with the upcoming tests.  
---- "Nothing ever becomes real till it is experienced." ----

Re: Suspected Advanced Ovarian Cancer

Posted by Elizabeth06 on Nov 4, 2019 11:38 am

Hello cinmngrl‍ 
Have they sent the samples already collected for a full pathology report?  It can take up to four weeks, but, there are several pathologists who review the tissues and together they come to a conclusion.
in 2013, after several different biopsies and many tests, I was told I had ovarian cancer and a complete hysterectomy was conducted.  Only to be told it wasn’t ovarian cancer.
once the pathology came in, I was told I had stage four lobular breast cancer.  It was present in all the tissues removed, but had never been picked up on any breast cancer screening methods.  Even after diagnosis, they could not locate the primary cancer.  It did not show on mammograms, ultrasound or mri.
The waiting is is the worst.
i guess what I learned is that many of the biopsies are only tested for that one suspected cancer type and not checked fully for any type of cancer.  An example would be a biopsy of the endometrium, sample taken, sample tested and confirmed, you don’t have endometrial cancer.  
If they have tumour samples, they should be able to have complete testing done as opposed to piecemeal.
best of luck to you.

Re: Suspected Advanced Ovarian Cancer

Posted by Elizabeth06 on Nov 4, 2019 11:49 am

Hello again,
just to answer ashcon‍ s question regarding cancer metastasizing to ovaries, breast cancer quite often does, especially lobular.  Apparently as we are developing in the womb, breast cells, and our other reproductive organs are very similar.  This makes those organs an easy spot for breast cancer cells to take up residence.
im sure there are other cancer types that metastisize, because of proximity, to the ovaries. 
I hope someone is advocating for you to have all the testing come to a conclusion and start treating whatever is going on.

Re: Suspected Advanced Ovarian Cancer

Posted by JustJan on Nov 5, 2019 9:48 am

I had been diagnosed with TN invasive ductal carcinoma and when I met with the oncologist about the mass on the ovary, she said that it would be very rare for that cancer to metastasize to the ovary and that if it was cancer would most likely be another primary site. In my case it was identified as another primary site.  
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Suspected Advanced Ovarian Cancer

Posted by PinkCarnations on Nov 5, 2019 10:25 pm

Elsie13:
I do hope you get some answers soon. 

You and me both! Elsie13‍ 

cinmngrl‍ I also live close to Toronto. (in the GTA)

Your journey is taking me back in time to where my journey started with a constant pain in my side that lead me to the emergency room. A 21cm tumour was noted by CTScan and it was thought that it was attached to my sigmoid colon. I was admitted and scheduled for a colonoscopy and surgery... the following morning I had a second CTScan and the colonoscopy was cancelled because it now looked like the tumour was growing from my ovary. I was told I couldn't be treated at that hospital and an appointment was scheduled for the following week at the Odette Cancer Centre with a gynecologic oncologist. They were quick to schedule my surgery and ovarian cancer was diagnosed by cytology. My tumour, ovaries, falopian tubes, and omentum were sent to Vancouver for a second opinion.. Then the long wait and continuous string of tests began. 

I hope you get some answers soon. 

Re: Suspected Advanced Ovarian Cancer

Posted by cinmngrl on Nov 6, 2019 10:59 am

Well the plot thickens, colonoscopy and gastroscopy came back with no issues.  From the sounds of things breast cancer might be the next test.  
On a positive note I am meeting the oncologist today to talk about starting chemo but I'll guess I see if this causes even more delays.
Thanks everyone for your comments this is such a stressful journey.

Re: Suspected Advanced Ovarian Cancer

Posted by cinmngrl on Nov 7, 2019 7:53 am

Well that did not go as expected.  They believe I have a very rare cancer of the appendix.  They are now trying to speak with specialists to see what the next steps are.

Re: Suspected Advanced Ovarian Cancer

Posted by ashcon on Nov 7, 2019 9:18 am

Hey cinmngrl‍ ,

Well, this is certainly an unfolding mystery.  Though being in the place of the unknown is the worst place to be, it seems that you have a bunch of very quick-to-respond doctors and specialists on your side.

Keep us posted  We're here for any venting or unloading that you want to do!
---- "Nothing ever becomes real till it is experienced." ----

Re: Suspected Advanced Ovarian Cancer

Posted by Beatcancer27 on Nov 8, 2019 7:37 am

 Your situation reminded me of what my mom is going through. Perfectly healthy but she started developing ascites which led her to seek medical help. Her family doctor was away for two weeks as she was getting worse then the family doctor sent her to ER. Based on a CT scan, tests on ascites, and blood test CA 125 my mom has formally been diagnosed with ovarian cancer and she is undergoing chemotherapy before surgery can happen. There are other cancer types that cause ascites so it took some time for the doctors to disgnose her. She was also scheduled for colonoscopy and upper endoscopy but they cancelled those. Do you know when your treatment plan will start? Based on similar symptoms, please let me know if I can help in any way.

Re: Suspected Advanced Ovarian Cancer

Posted by cinmngrl on Nov 14, 2019 4:40 pm

Things are just so complicated, I had no idea.  Everyone on this site is so brave for managing this process.
It seems every test brings a new problem so I asked for a second opinion with another doctor at Sunnybrook.  They seemed extremely confident I have Appendix Cancer not Ovarian when they looked at my CT scan and other information and that I should insist on being treated by a specialist at Mount Sinai (not my current Gynecoligic Oncologist).  They highly recommended that I cancel my surgery that was planned for today to remove my ovaries and my appendix (but none of my other tumors) until the specialist met me and reviewed the CT scan.  I had to make the difficult decision to do that even though I wanted them out so bad, knowing that if I do have this rare cancer that I should be seen by someone who had experience... Now I wait, it's been over a month since I've been told I have cancer and every day just seems so long while I wait.  Now I will wonder every day if I made the right decision not knowing how long it will take to get in to see Dr. Govindarajan. 

Re: Suspected Advanced Ovarian Cancer

Posted by Cynthia Mac on Nov 15, 2019 8:42 am

cinmngrl‍ , now, you are one of the brave ones. 

I think that what you have just done is what a lot of cancer patients do: you’ve put your trust in the professionals whose job it is to get them better. No small feat, when, as you say, you “wanted them out so bad.” That is a very normal reaction, even though you know that the planned surgery wasn’t going to solve the whole problem.

You mention that there are other tumours, and earlier on you mentioned having chemo before surgery. I hope your referral comes through quickly. In the meantime, try to imagine your body doing what it can to fight those tumours, just the way a sports champion imagines their victory.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying