Remember my relief over finally getting a Gyno/Onc? FORGET IT

bluerose

Bummed doesn't begin to discribe how I feel. I feel like I am in some bad nightmare that just keeps replaying back to the start. I called today to see what date they had for me to see the Gyno/Onc I fought so hard to get an appointment with and was stunned to find out that they got it and looked at it and sent it to 'benign' gynie, back to a regular Gynecologist. Sigh. I was routed there by a doctor and an agency that deals with ovarian and still I get tossed back. How the heck do they know it's benign from a CT and one pelvic ultrasound? No one did a CA125 or a second ultrasound to compare it with and how much info did they get from my GP about my background? I am just shocked that this is
playing out the way it is.

I asked them to reassess this throw back to reg. Gynie and they are doing that but my guess is that they will call back and stand firm. I am starting to journal all of this
because if this turns out to be cancer and it advances in stages it will be because of the lag in getting me seen and biopsied for sure.

I don't know whether I am mad, disappointed, feel abandoned, want to cry, throw things, sigh - probably all of the above.

Guess I will just stay on the morphine for the pain when it arises and sit and wait cause I have come up against yet another wall. You couldn't write fiction like this if you tried. Just unreal. Somebody shoot me. Blessings, Bluerose

lindaprocopio

A good gyno will refer you to a gyn-onc if cancer suspected.
Sorry for this added delay, Blue. When my cancer was first suspected following a routine PAP, I was sent to a regular gynocologist by my family doctor. It was the regular gynecologist that did the additional biopsies, sonogram and D&C, and when she was convinced it was cancer (although she didn't recognize the rare form I had), she insisted that I see a gyn-onc. I liked my new gynocologist, and trusted her, and knew she did hysterectomies, so I asked her to do mine (not knowing what I know now.) She INSISTED that I see a gyn-onc for hysterectomy and staging, ans with her referral, I was seen within a week. So perhaps you won't lose as much time as you think. The regular gynocologist should be able to run tests that show conclusively if this is cancer. And then she'll refer you to the gyn-onc is this is oncology related. And with a confirmed cancer diagnosis, you will probably be seen right away. I'm hoping all the tests at the gynecologist prove that this is NOT cancer and is the 'benign' event that they all seem so sure it is. ((((Blue))))

jane65

Bluerose
I don't believe this, I absolutely don't believe this and I am for once, speechless.
Actually I'm not speechless I am furious, and sad for you.
Jane

bluerose

lindaprocopio said:

A good gyno will refer you to a gyn-onc if cancer suspected.
Sorry for this added delay, Blue. When my cancer was first suspected following a routine PAP, I was sent to a regular gynocologist by my family doctor. It was the regular gynecologist that did the additional biopsies, sonogram and D&C, and when she was convinced it was cancer (although she didn't recognize the rare form I had), she insisted that I see a gyn-onc. I liked my new gynocologist, and trusted her, and knew she did hysterectomies, so I asked her to do mine (not knowing what I know now.) She INSISTED that I see a gyn-onc for hysterectomy and staging, ans with her referral, I was seen within a week. So perhaps you won't lose as much time as you think. The regular gynocologist should be able to run tests that show conclusively if this is cancer. And then she'll refer you to the gyn-onc is this is oncology related. And with a confirmed cancer diagnosis, you will probably be seen right away. I'm hoping all the tests at the gynecologist prove that this is NOT cancer and is the 'benign' event that they all seem so sure it is. ((((Blue))))

Hey Linda
Yuppers I got that chain of command message early but when I checked with an ovarian cancer group they forwarded my query to a doctor and he said tell her to insist on a gyno/onc considering her past history so that's why I have been fighting so hard. I did see a regular gyno but could not proceed with her for many reasons and the other one I was referred to looked at my results from the radiologists reports and decided that a consult for a second opinion could wait til the end of Oct. They all seem so sure it's benign yet no one knows for sure, guess that's good enough. Something is telling me it isn't.

I am waiting for the second look at the referral request from the gyno/onc but like I said I hold out little hope they will change their minds. If they refuse me again then I will go with a reg. gyno at first but I'm sure this all won't be til the late fall or winter the way delays are going here. It isn't only about the gyno vs gyno onc diagnosis route for me it's the delays to get to either of them when all added up feel scarey to me.

Thanks for the input. Blessings, Bluerose

bluerose

jane65 said:

Bluerose
I don't believe this, I absolutely don't believe this and I am for once, speechless.
Actually I'm not speechless I am furious, and sad for you.
Jane

Like I said Jane, you couldn't write fiction like this
I have read others background on how their ovarian started and although I never read someone's else's journey and say 'ME TOO' and presume the outcome will be the same EVER but some symptoms are just too close to ignore. I have a very well known gyno here saying to see a gyno/onc and persist in requesting one due to my history but yet when
you get into the hospitals through referrals they refuse me. I can't go to this doc who said to see a specialist cause it was kind of off the record and passed on to me by a third party so in a bit of a red tape thingy there.

Anywho the gyno/onc's office is reassessing my referral but like I said in another post here not too optimistic about them turning that around but we will see. They have gynie's in that hospital that they will refer me too and I will just have to see one and hope things go better than the with the first one. She was going to do the surgery and there were lots of red flags as to why I shouldn't go with her so we will see.

I'm losing energy fast here. Blessings Jane, thanks for your validation and support. Hope today finds you better than yesterday. Bluerose

momspot

bluerose said:

Like I said Jane, you couldn't write fiction like this
I have read others background on how their ovarian started and although I never read someone's else's journey and say 'ME TOO' and presume the outcome will be the same EVER but some symptoms are just too close to ignore. I have a very well known gyno here saying to see a gyno/onc and persist in requesting one due to my history but yet when
you get into the hospitals through referrals they refuse me. I can't go to this doc who said to see a specialist cause it was kind of off the record and passed on to me by a third party so in a bit of a red tape thingy there.

Anywho the gyno/onc's office is reassessing my referral but like I said in another post here not too optimistic about them turning that around but we will see. They have gynie's in that hospital that they will refer me too and I will just have to see one and hope things go better than the with the first one. She was going to do the surgery and there were lots of red flags as to why I shouldn't go with her so we will see.

I'm losing energy fast here. Blessings Jane, thanks for your validation and support. Hope today finds you better than yesterday. Bluerose

Hugs Blue
Im so sorry for all your delays! Dealing with the medical community is sooo frustrating. I have my surgery tomorrow so things moved much faster for me. But it still stuns me that I had to ask for the initial ultrasound. I will keep my fingers crossed that they give you the go ahead for the gyno/onc. Keep yours crossed for me.

Momspot

bluerose

momspot said:

Hugs Blue
Im so sorry for all your delays! Dealing with the medical community is sooo frustrating. I have my surgery tomorrow so things moved much faster for me. But it still stuns me that I had to ask for the initial ultrasound. I will keep my fingers crossed that they give you the go ahead for the gyno/onc. Keep yours crossed for me.

Momspot

Rats, missed you by a day
It is Wednesday here in Canada in Ontario where I am and you have probably had your surgery by now or soon. I have prayed that all went well. I, and others here I'm sure, are waiting anxiously for your results so hope to hear from you as soon as you are able.

One positive thing is that I did get my CA125 and it was 20 and while I know that the numbers can be misleading and it's the 'bounce' that's more important and other factors at least it wasn't an outrageous number and I plan to redo the CA in a couple of months time as I continue my wait for a biopsy. Actually two positive things. I heard once again from an information line here in Canada that you can call for info, had the good fortune when I called the first time looking for help to come in contact with a very caring soul of a counsellor who has kept in touch with me for updates ever since. She spends alot of time with me on the phone discussing routes to take and clears up any misconceptions I have and is very thoughtful indeed. Nice to know that someone in the system is interested in my journey trying to get help. Still as good as the intentions are it isn't bottomline help in getting me in to see a gyno/onc earlier but it does help to validate me and an outlet for listening to my woes regularly - that's important too - to pass this all by someone in the know from time to time while I wait, and wait, and wait.

Going to say another prayer for you. Hope to hear from you soon with good news. Hugs big time, Bluerose