how to proceed

I have a close friend who has just found out she has a 12cm growth on what the doctor described as on top of her uterus.  It has not been diagnosed as cancer, but it seems there isn't enough testing going on and he wants her to make decisions without much information.  She is 37 and has not had a child yet, so preserving her fertility is very important to her.

My question is this, is it normal for a gyn oncologist to want to go in and remove the growth without knowing what kind of growth it is?  I've been reading about several alternatives for Dr's to determine what it might be before operating, but he's only given her a pelvic exam and taken an MRI.  He's asked for permission to remove everything, but doesn't give her any information to help her make the decision.

Any comments out there?

Any referrals to good information?  At this point I feel like I'd be willing to pay for her to go outside of her insurance and get an independant opinion (she's got Kaiser and sees Kaiser Dr's.).  Obviously it needs to be removed, but the lack of testing and information is frustrating.

Thanks for any help/referrals

When imaging (ultrasound and/or CT and/or MRI) shows a solid mass in some specific areas of the body, the chances that it is cancerous are very high.  Only a pathologist's examination of the tumor or a small piece of it (biopsy) can tell for sure if something is cancerous.  However, when imaging shows that the chances are very high that a mass is cancerous, it is not unusual for a gyn oncologist to proceed without a biopsy.  If the tumor is deep in her pelvis, it can be difficult to do a biopsy, and there are some very serious reasons not to attempt biopsy.  During surgery, the doctor can see the tumor, and a bit of it is sent to the pathologist for an immediate examination.  The doctor will know before he proceeds with removing the tumor  whether it is cancerous or not, and if it is not cancerous, the doc will most likely remove the mass and as little normal tissue as possible; if it is cancerous, surrounding tissue must be removed, too. 

I understand her concern about fertility; I myself had my only child at age 40, and endometrial cancer at age 50.  Has she discussed her concerns about fertility with her gyn oncologist?  See http://www.cancer.org/docroot/MBC/MBC_2x_Fertility_and_Cance , http://www.asrm.org/Media/Ethics/FertilityPreservation.pdf&n http://www2.mdanderson.org/depts/oncolog/articles/06/1-jan/1  or some infomation about cancer and fertility.  I know that there are some research institutions that are beginning to preserve fertility in new ways; perhaps her gyn oncologist can put her in touch with these researchers.

It is more important to do surgery correctly (for her) than quickly, but of course, you don't want to wait too long.  One of the articles linked to above points out that some gyn oncologists are not good about telling patients their options for preserving fertility. I, myself, got a second opinion before my surgery (I lived in a small city where there were no gyn oncs); I had to wait three weeks to get an appointment but it was worth it for the information I received.  She may well need to go outside the Kaiser network to get the information or or treatment that will preserve her fertility.  At 37, her fertility is naturally in a steep decline, which is does not bode well for the success of fertility preserving options, but so many great things are being done now that someone may have some hope for her.

On 11/14/2008 Trishpm wrote:

When imaging (ultrasound and/or CT and/or MRI) shows a solid mass in some specific areas of the body, the chances that it is cancerous are very high.  Only a pathologist's examination of the tumor or a small piece of it (biopsy) can tell for sure if something is cancerous.  However, when imaging shows that the chances are very high that a mass is cancerous, it is not unusual for a gyn oncologist to proceed without a biopsy.  If the tumor is deep in her pelvis, it can be difficult to do a biopsy, and there are some very serious reasons not to attempt biopsy.  During surgery, the doctor can see the tumor, and a bit of it is sent to the pathologist for an immediate examination.  The doctor will know before he proceeds with removing the tumor  whether it is cancerous or not, and if it is not cancerous, the doc will most likely remove the mass and as little normal tissue as possible; if it is cancerous, surrounding tissue must be removed, too. 

I understand her concern about fertility; I myself had my only child at age 40, and endometrial cancer at age 50.  Has she discussed her concerns about fertility with her gyn oncologist?  See http://www.cancer.org/docroot/MBC/MBC_2x_Fertility_and_Cance , http://www.asrm.org/Media/Ethics/FertilityPreservation.pdf&a http://www2.mdanderson.org/depts/oncolog/articles/06/1-jan/1  or some infomation about cancer and fertility.  I know that there are some research institutions that are beginning to preserve fertility in new ways; perhaps her gyn oncologist can put her in touch with these researchers.

It is more important to do surgery correctly (for her) than quickly, but of course, you don't want to wait too long.  One of the articles linked to above points out that some gyn oncologists are not good about telling patients their options for preserving fertility. I, myself, got a second opinion before my surgery (I lived in a small city where there were no gyn oncs); I had to wait three weeks to get an appointment but it was worth it for the information I received.  She may well need to go outside the Kaiser network to get the information or or treatment that will preserve her fertility.  At 37, her fertility is naturally in a steep decline, which is does not bode well for the success of fertility preserving options, but so many great things are being done now that someone may have some hope for her.

Thank you Trishpm,

Things are happening so quickly my head is spinning.  I went with her to an appointment today and I left feeling somewhat uneasy.  I don't want to bring any additional worry to my friend at this late date; she'll have surgery on the 25th.  I guess I didn't like his attitude; it seemed like any little comment we would make asking about the procedure he would respond with "we can stop this anytime if that's what you want."  He really lacked any emotion or touch in delivering his opinion during this difficult time for her.  The mass is quite large (9cm) and I don't want to put doubts in her head since she's resigned herself to getting it over with.  She really respects my opinion and if I tell her I'm not comfortable, she'll be uncomfortable right away.

I guess I'll try to contact someone by phone tomorrow and see if there's any way I can get a second opinion, even if it's over the phone.  I wish I had some insight to this doc's reputation, aside from what's posted on his website (education/residency training/fellowships).  Any tips on how to get the inside scoop on this doc's reputation?

It can be quite hard to find out a doc's rep other than the obvious "paper" rep of education, training, etc. Unfortunately, the largest gyn email support list (http://www.eyesontheprize.org/ ) does not allow mentioning of docs by name. You or she might try asking other gyn cancer survivors who they see and what they think.  If you know a nurse that works in gyn oncology, she may be able to tell you how most people feel about this doc. 

Again, it is more important to do the surgery correctly (for your friend) than to do it quickly.  If she is seriously concerned about preserving her fertility, she needs to attend to that before surgery, and even if she decides to proceed without preserving fertility, she will know that she has made her decision with all the facts. 

Also sometimes excellent surgeons are not big on bedside manner.  The best docs have both skill and compassion.  If she wants to proceed with surgery quickly, she might have him do the surgery and look for another doc for her followup.

On 11/19/2008 Trishpm wrote:

It can be quite hard to find out a doc's rep other than the obvious "paper" rep of education, training, etc. Unfortunately, the largest gyn email support list (http://www.eyesontheprize.org/ ) does not allow mentioning of docs by name. You or she might try asking other gyn cancer survivors who they see and what they think.  If you know a nurse that works in gyn oncology, she may be able to tell you how most people feel about this doc. 

Again, it is more important to do the surgery correctly (for your friend) than to do it quickly.  If she is seriously concerned about preserving her fertility, she needs to attend to that before surgery, and even if she decides to proceed without preserving fertility, she will know that she has made her decision with all the facts. 

Also sometimes excellent surgeons are not big on bedside manner.  The best docs have both skill and compassion.  If she wants to proceed with surgery quickly, she might have him do the surgery and look for another doc for her followup.

Thanks again Trishpm,

It's helpful to have someone listening and giving me some feedback.  I never thought I would be hit this hard emotionally; I have difficulty sleeping, and think about what she's going through all the time.  I'm beginning to doubt myself as everywhere I turn ends up with little result.  I called UC Davis Medical Center and they say they're so impacted that they don't make appointments for 2nd opinions.  I also called their cancer support program (since this doc claims to be an associate professor for UC Davis) and all they could do is refer me back to Kaiser.  I called the Women's Cancer Resource Center and though they were caring and understanding, they couldn't offer me any insight to my questions. 

This doc is board certified in gyn, oncology, and internal medicine; what's different (which I didn't realize before) is he's the surgeon as well.  Apparently most oncologists turn the operation over to surgeons, they don't do it themselves.  So now I'm hoping that he doesn't spread himself too thin and actually doesn't perform enough operations to stay well practiced.  I think I'm driving myself crazy.  It looks like this is going to move forward as is.

One last question, do you have an opinion which of the online "rate my doc" type services is best?

 I can't thank you enough