I need advice please!

Judemo

Hello. just a little refresher before I explain. I was supposed to have readical hyst last Monday for cerv & endometrial cancer.  My Gyn/onc came in last minute to say he was switching surgery to a conization & that my initial DX of malignancy from my regular GYN could be wrong & that mass found on CT is prob just fibroids. He never addressed my other new DXs of CIN III, VIN III, & VAIN III at that time & I was too shocked to remember to bring it up. So, I have Conization under gen anesthesia and was told I would get my results regarding uterine/cerv CA by LAST Thurs. Well, they called last Thur (at the end of the day mind you) to say the gyn/onc wanted to send path results on to Wash U pathologists for 2nd op & that I would have to wait till the following Tues (yesterday). I call them yesterday only to find out the results still haven't come back & that it could be a few more days.....AND get this, she tells me that my Gyn/onc is going out of town next week for 2 weeks and that if the results come in beginning of next week that I would have to wait till he comes back from vaca to learn results!!!!  WHAT?!?!  Then she tells me I probably wouldn't know until Aug 12th bc that would be the soonest they could get me in for my post Conization surgery appt.  All the while when I go into my health record portal online from my GYN/onc I see the following DXs from 3 weeks ago: Endocervical adenocarcinoma, ABD mass R lower quadrant, HPV DNA high risk positive, and the CIN III, VIN III & VAIN III.

Another issue is this: my last regular Pap smear with a regular GYN was from 2011, this was the last DR visit I had before I had my "malignant" DX this past June. I found out yesterday that on that 2011 Gyn pap smear that it was HPV + and no one ever called me from that office (I had to switch GYNs bc of insurance) so back then I assumed no call was good news and that the protocol was Pap smear the following year, which I NEVER went until this year (my bad and my stupidity!). After reading on the Am Cancer Soc website that the protocol would to have had a colposcopy due to the HPV + and esp due to my HX of bad Pap smears. So I must have fallen through the cracks and was never followed up with.  So, as a reminder to you lovely ladies, DONT FORGET TO FOLLOW UP AFTER EVERY EXAM!!

Also, would really appreciate any thoughts on the above dilemma with these test results?  If you have time.  Thank you so much!

jude

SUNGRANNY

Seems like someone must be covering for Gyn Onc when out of town.  Is there a way to communicate that you would want to speak to that person, if only to get the results?  You may have to be a bit insistent about not waiting 2 weeks, the stress, etc.

Sara

It happened to Me

SUNGRANNY said:

Seems like someone must be covering for Gyn Onc when out of town.  Is there a way to communicate that you would want to speak to that person, if only to get the results?  You may have to be a bit insistent about not waiting 2 weeks, the stress, etc.

Sara

I agree, insist on the results

If nothing else, sign a release and have it sent to your PCP and have them read it.  Then you have some answers.  I think it's pretty rude not to give the results in a timely manner.  If they had the same thing happen to them, they would certainly change their attitude.  Go for it girl.  Get the answers.  Be a bull in a china shop.  That kind of nonsense angers me.

Jeanette

Kaleena

Seek a medical opinion

Jude, even if you are persistent, the tests may not ever be done.   My last two PAPs were abnormal and the later one HPV positive.  I have mentioned this to several physicians who indicated because mine was ASCUS and HPV there was nothing to worry about.   I said then why do you keep doing the tests?   ugh.   My newest doctor doesn't believe in PAPs because he indicated it can't detect recurrence of endometrial adenocarcinoma.   I don't buy that either so after seeing him 3 or 4 times, this last time I asked for a PAP smear even though he didn't want to do one.   He did it but I am not sure if he even got a good sample (if you know what I mean).   I got a PAP this time as normal.   I usually have results of normal with inflammation, etc.   Not this time.

But your case seems different and they should have taken a more watchful approach given the cervical cancer.   Are you able to get a second opinion somewhere?  I think it is unprofessional for a physician to come in right before your surgery and indicate that they are doing something else.  They get you at a weak moment and you just go along with what they say. After years of some of this stuff, I have finally gotten up the nerve to walk out of a doctor's office if I feel the fit isn't right.

I would call your Gyn/Onc and ask him/her if his staff can give you the results while he is away.   Making you wait an additional 2 weeks is ridiculous.    I can see your doctor not wanting his staff to give you medical advice, but they surely can release your results to your portal.

Wow, I am still amazed that you went for a radical hysterectomy and just ended up with a conization.   Go get a medical opinion from a different location.   By the way, your not stupid.  If you look on the portal, even with the fact that I was HPV positive, both PAPs and HPV testing says I don't need to do it for another 5 years.   However, previous doctors did it for me every 6 months.  So there is still a great debate with the PAP stuff.

My best to you.

Kathy

 

Judemo

Kaleena said:

Seek a medical opinion

Jude, even if you are persistent, the tests may not ever be done.   My last two PAPs were abnormal and the later one HPV positive.  I have mentioned this to several physicians who indicated because mine was ASCUS and HPV there was nothing to worry about.   I said then why do you keep doing the tests?   ugh.   My newest doctor doesn't believe in PAPs because he indicated it can't detect recurrence of endometrial adenocarcinoma.   I don't buy that either so after seeing him 3 or 4 times, this last time I asked for a PAP smear even though he didn't want to do one.   He did it but I am not sure if he even got a good sample (if you know what I mean).   I got a PAP this time as normal.   I usually have results of normal with inflammation, etc.   Not this time.

But your case seems different and they should have taken a more watchful approach given the cervical cancer.   Are you able to get a second opinion somewhere?  I think it is unprofessional for a physician to come in right before your surgery and indicate that they are doing something else.  They get you at a weak moment and you just go along with what they say. After years of some of this stuff, I have finally gotten up the nerve to walk out of a doctor's office if I feel the fit isn't right.

I would call your Gyn/Onc and ask him/her if his staff can give you the results while he is away.   Making you wait an additional 2 weeks is ridiculous.    I can see your doctor not wanting his staff to give you medical advice, but they surely can release your results to your portal.

Wow, I am still amazed that you went for a radical hysterectomy and just ended up with a conization.   Go get a medical opinion from a different location.   By the way, your not stupid.  If you look on the portal, even with the fact that I was HPV positive, both PAPs and HPV testing says I don't need to do it for another 5 years.   However, previous doctors did it for me every 6 months.  So there is still a great debate with the PAP stuff.

My best to you.

Kathy

 

Thanks for the reply & advice guys!

I was stalling to go to another DR bc let's face it, I'm a little lazy & didn't feel like going through new exams by the new DR and I thought I would be patient and hold out for these results but ....something needs to change.  however, I did call my old GYN who took care of me for almost 30 years & with whom I had to stop going to bc of my inconvenient new insurance....and left a msg with her nurse to have her call me.  She was the one who did my endometrial ablation back in 2009, so we'll see what she has to say.  She actually has access to the current hospital I'm gettin care from & might be able to get my records.  So I'm just waiting for calls today from a couple of diff DRs offices.  

I'm so greatful to have you guys listen and respond to me! Thank you so much! My hubby thinks I'm over doing the worrying a bit & thinks everything is going to come up smelling like roses!  

Kathy, i couldn't agree with you more about last minute changes!  Henfold me he was out of town & just had read the results the morning I was supposedly having rad hyst!  Unbelievable!! He should have just taken the darn thing out & now we would know what we are dealing with! 

I did leave a message with his office demanding an answer before he goes on vaca or to be called by on-call DR.

Thanks again for all the help!

jude

pinky104

Change of plans for surgery

I went into the hospital in May of 2010 expecting to have robotic surgery and be back to work in 2 weeks.  The CT scan my gyn/onc requested was done at a different hospital where I worked (more convenient for me) and it turned out my gyn/onc didn't even look at it (in spite of a call of mine to his office where I didn't get through to him, just the phone staff) until the day of surgery.  He's a very busy man with tons of patients.  He came in and announced he couldn't do the procedure robotically that day, as he'd just reviewed the scan and the cancer had spread too far ( it turned out to be stage IVb).  My sister, who was a nurse, wanted my gallbladder taken out at the same time so I wouldn't need a second surgery, so my gyn/onc called in a gastroenterologist to add that surgery to my plate that day.  The day certainly turned out a lot worse than I planned, but it did all work out in the end.  I never did go back to work after surgery.  I was on disability for months and then became eligible for Social Security when I hit 62 as I was finishing up my chemo, so I quit work (I'm sure the stress from my job contributed to my cancer so quitting my job was a positive thing).

I think your doctor is certainly inconsiderate for making you wait so long.  Perhaps he does have someone else covering for him, or maybe he just didn't feel like delivering the bad news to you before his vacation.  I think that in your shoes, I'd want to switch again if it weren't for wanting to get it taken care of a.s.a.p.  Good luck to you.

Judemo

pinky104 said:

Change of plans for surgery

I went into the hospital in May of 2010 expecting to have robotic surgery and be back to work in 2 weeks.  The CT scan my gyn/onc requested was done at a different hospital where I worked (more convenient for me) and it turned out my gyn/onc didn't even look at it (in spite of a call of mine to his office where I didn't get through to him, just the phone staff) until the day of surgery.  He's a very busy man with tons of patients.  He came in and announced he couldn't do the procedure robotically that day, as he'd just reviewed the scan and the cancer had spread too far ( it turned out to be stage IVb).  My sister, who was a nurse, wanted my gallbladder taken out at the same time so I wouldn't need a second surgery, so my gyn/onc called in a gastroenterologist to add that surgery to my plate that day.  The day certainly turned out a lot worse than I planned, but it did all work out in the end.  I never did go back to work after surgery.  I was on disability for months and then became eligible for Social Security when I hit 62 as I was finishing up my chemo, so I quit work (I'm sure the stress from my job contributed to my cancer so quitting my job was a positive thing).

I think your doctor is certainly inconsiderate for making you wait so long.  Perhaps he does have someone else covering for him, or maybe he just didn't feel like delivering the bad news to you before his vacation.  I think that in your shoes, I'd want to switch again if it weren't for wanting to get it taken care of a.s.a.p.  Good luck to you.

Hi Pinky104!

Thanks for your reply!  I am so sorry to hear about what you have been through! How are you doing now? Can you share about your treatment after you found out about your DX?  What kind of uterine ca do you have?  Again, I am so sorry for all the pain you must have been going through this year!  I hope you are feeling good now?  I found out I have endometrial adenocarcinoma and I'm under the understanding that it is a much slower growing cancer, but won't know the stage/grade till after surgery.  They did tell me it invaded the cervix.  My CT scan showed a right lower abdominal mass But the pet scan was apparently negative...so who knows. Thank you for your support! I've been learning so much through this discussion board and website!  Best wishes for you!

jude

DebiR

I agree - insist on the results

This is my first post.  I am also a UPSC sister (grade 3 poorly differentiated) and received my diagnosis 4/11/14.  My radical robotic hysterectomy was 5/19/14.  I am stage 3A with microscopic cells in both ovaries and the pelvic wash.  Tumor size was 2 cm x 1.5 cm x .5cm and myometrial invasion only 1mm.  Everything else was clear including 22 lymph nodes tested. I had my first chemo of 6 on 7/16/14.

The GYN who did my biopsy was also on vacation when the results were due back a few days later.  She promised me I would hear by Friday so I didn't have to have it on my mind all weekend.  Someone from the office was to call me.  When the UPSC results came back she called me personally from her vacation.  She had already contacted and referred me to the Director of Gynecology Oncology within the hospital network (University Hospitals Seidman Cancer Center).

Debi

 

Judemo

DebiR said:

I agree - insist on the results

This is my first post.  I am also a UPSC sister (grade 3 poorly differentiated) and received my diagnosis 4/11/14.  My radical robotic hysterectomy was 5/19/14.  I am stage 3A with microscopic cells in both ovaries and the pelvic wash.  Tumor size was 2 cm x 1.5 cm x .5cm and myometrial invasion only 1mm.  Everything else was clear including 22 lymph nodes tested. I had my first chemo of 6 on 7/16/14.

The GYN who did my biopsy was also on vacation when the results were due back a few days later.  She promised me I would hear by Friday so I didn't have to have it on my mind all weekend.  Someone from the office was to call me.  When the UPSC results came back she called me personally from her vacation.  She had already contacted and referred me to the Director of Gynecology Oncology within the hospital network (University Hospitals Seidman Cancer Center).

Debi

 

DebiR welcome!

Sorry that it is under these circumstamces.  Thanks for your reply.  my heart going out to you with what you are going through too!! Wow, you had a good GYN! But shocking news! What has been your experience thus far? Feel free to post a new topic to start a new thread on the discussion board bc then all the wonderful healing ladies will respond to you as they might not see you as a new member on this thread.  But, I welcome you and we embrace you here and are here to listen to you & answer questions. I want to hear all about your experience if you feel comfortable with sharing....

jude