I will try to be through but yet brief as possible
I am located in BC, Canada - I am 39 yrs old
In July I went to see my GP (actually she's a nurse practitioner and I adore her) due to being unable to get pregnant for quite some time, along with a few other things that lead me (and her) to suspect PCOS. She also referred me to a fertility specialist given my age & length of time we've been trying. She also ordered blood work, urinalysis & an ultrasound since she knew the FS would want the U/S.
She could not do a pap because she could not visualize my cervix - said she'd let the FS do one.
U/A came back showing blood, not a big deal - my period started the day after I peed in the cup.
All other tests normal, ordered a repeat U/A mid-cycle.
Repeat U/A showed microhematuria, since this is a common problem, protocol is to run 3 U/A's & if they all come back positive - then refer to a urologist.
Went for the U/S on Sept 21, they did abdominal & then trans-vaginal. Told me nothing of course, other than the results would be sent to my GP & the FS - standard, no problem - didn't think anymore about it.
On Sept 27, the local clinic called - hubby took the call & was told that my regular GP was on vacation (which I knew) but that one of the other doc's wanted to discuss my test results, an appt was set for the following day.
Still I'm thinking that they are going to tell me it's PCOS. The doc tells me that they found 3 cysts/masses as follows
On right ovary - 1cm...not too bad
Left ovary - 14cm...really? Damn
"In the middle" - 14cm....what the heck?
I didn't ask many questions because I was not expecting this & I try to be an informed person. I was able to get out of him that it was not fibroids, there would be surgery & he was referring me to a gynecologist since my appt w/the FS was not until December (too far away he said).
We only live 5 minutes away from the clinic & when I got home there was already a msg on the machine from the clinic that the FS knew about the test results & wanted to see me sooner, within 2 weeks and he'd also ordered some blood work, including a CA-125 & CEA.
Fast forward - saw the FS last week - CA-125 was 94 & the CEA was elevated also - everything else was 'normal'.
He did his own U/S (abdominal & trans-vaginal) and told us afterward in his office that he would not be doing the surgery but would be referring me to a gynecological oncologist surgeon.
His findings from the U/S are...
right ovary - didn't see anything
left ovary - 14cm
"in the middle" - 16cm
I asked what "in the middle" means and he said that he couldn't see where it originates so that's the best answer he could give us at the moment. He also said he did not see any solid areas in them, which is a good sign.
He did say that these things fall into 3 categories - definitely malignant, definitely benign and borderline - he said these were borderline. He did say that surgery would be open belly, not laproscopic and that they would do a frozen section during surgery & depending on the results of that - I could come out of surgery with no ovaries, no tubes & no uterus. Great - there goes the idea of having a baby (I'm not sure yet which is more upsetting, the possibility of having cancer or not being able to have a baby)
This is my first dealings with the BC health care system (I'm originally from the States) so I'm playing it by ear here. The FS said he was going to expedite the referral to the gyn/onc surgeon and would like to see the surgery done soon, preferably before xmas.
A quick search tells me that gynecological surgeries in the province have a median wait time of 5 weeks so...don't know.
I guess I'm looking for thoughts on my findings - sound like something, sound like nothing - am I being a drama queen, hypochondriac, etc
Hubby's take on it is - let's wait & see what we're dealing with first before we panic too much. He's also admitted that it's easy for him to say, although I know he's very concerned.
Keeping hoping to hear from the oncologist's office soon (there's a thought I didn't ever think I'd have at the age of 39...or ever!) and I don't know how long to expect to wait.
We'd like to meet with the surgeon before surgery to discuss everything rather than just meeting her after it's all said & done.
Is there anyone else from BC who has been through something similar who might be able to give me an idea of what to expect? I've thought about emailing or calling the local cancer society to ask, and I probably will still do that, along with making an appt w/my nurse practitioner.
I still can't believe this all came about from one appt in July.
Hi. I'm not in BC but I hope I can shed some light. I too was borderline (stage 1C). My gyn oc told he thought it was borderline, but they wouldn't know definitively until after the pathology report came back which would be after the surgery.
I gave permission before the operation for a full TAH/BSO, but I was already in my 50s and beyond childbearing years.
5 weeks is not a long time to wait. Not much will happen during that time. I also waited about a month and I do live in the States. Ask lots of questions, do lots of research, and read some of the experiences on this board. They will help.
Thank you SO much for replying!
I don't know what TAH/BSO is yet (but I'll look it up), I'm guessing it's everything out (both ovaries & uterus).
I was talking to my mum today (she's a nurse - but more med-surg & cardiac) so she's not up on oncology but I was telling her that I was thinking of not agreeing to having everything taken out based on a frozen section, but rather preferring to wait until the full pathology results were back.
I still don't know and I guess I really have to wait until we see the gyn/oc and what she seems to think. I'd really, really hate to think that the frozen section might come back as questionable - they take everything out & then the full pathology comes back as not a big deal and we've just destroyed any chance of a child, along with throwing my body into menopause.
The FS did say that these things had been in there awhile so....hopefully they are just giant cysts & no big deal & I'm worrying for nothing....but I can't help but to worry.
I guess I'd rather expect the worst & hope for the best - this way I'm not surprised if the news is crappy.
Did you need to have chemo after your surgery or was it all removed w/surgery?
I just have so many questions and it seems like if it was 'other' types of cancer there would be more answers to some of my questions. I hate the idea that we can't really know anything until after surgery.
I am from BC.
July 14 had borderline mucinous tumor removed (17cm- microinvasion and mural nodule anaplastic carcinoma). Also had TAHBSO (everything out). My surgery happened 2 weeks after we found the mass (pretty quick) and was done locally by my gyn surgeon (not an oncologist).
Before surgery I had blood work (all tumor markers normal), ultrasound showed large "complex" mass (ie. not benign). They suspected borderline but of course had to wait until they actually got it out and looked at it microscopically. My surgeon and I came up with the following "what if's"
* if benign-take out tumor only
* if not benign (borderline/malignant) - take out everything (I'm 42 with 2 kids)
Afterwards I was sent to the BC Cancer Agency in Vancouver....just for follow up I guess.
My advice... ask to have the surgery done by a gyn oncologist. Mine was NOT and I regret it. I didn't get proper staging (which is a procedure for determining how far the cancer has spread...they wash the peritoneum, take biopsies and scraping and just look around). Now when they tell me I have "stage 1 borderline mucinous" I wonder "based on what?" Proper staging is CRITICAL for determining treatment and prognosis. Study upon study that I have read says that gyn surgeons and general surgeons do NOT do proper staging...even when they are told to be sure to do it. They just aren't up on cancer, where it can originate...mucinous tumors often come from the appendix, and when there are more than one, the appendix as the origin for the tumors should be highly suspected....
My understanding with Borderline tumors is that fertility sparing surgery is usually appropriate (but seeing as you are looking at 3 tumors....that sounds different than anything I've read). Three tumors would
It is a gynecological oncologist surgeon who is going to be doing the surgery. The fertility specialist I saw earlier this month (who is a gyn of course and also a surgeon) said he would not do it.
The surgeon has agreed not to just take the results of the frozen section and if at all possible to remove the masses and leave at least my right ovary if at all possible.
The FS specialist said he could not see anything on my right ovary - just the 14cm on my left and 16cm in the middle.
I have a feeling, based on my appt w/the surgeon that she's not going to be in a great hurry to get it done. I posted a thread about my appt the other day.
Are you or did you have to do chemo?
We're dealing w/BC Cancer Centre in Victoria across from Royal Jubilee - but she said my surgery will be at Victoria General (which I'm not too thrilled about but...)
Good to hear yours was contained & that you didn't need chemo (I'm assuming it was contained I should say...)
Hubby has said over & over he'd have no problem at all with it if I had everything taken out, but I would.
If I were even 5 yrs older, I'd probably be okay with it. The fact that we've been trying to get pregnant for 5 yrs though...and having everything taken out...would just gut me.
The idea of surgical menopause before 40 also? Not too keen on that, if I have to - I will but, I'd certainly prefer not.
I'm going to post another thread with my surgery info I guess, I'm never sure if for a new topic I should pit it out there or continue on what I've started...I think new topics deserve new threads though :-)
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