Why do doctors do this so often?

[Teresa222]

I seem to notice more and more questions from people whose GYN's just cut them open, doing a major surgery not even informing the women they could consult a GYN/ONC.  Furthermore, they go in to remove a "cyst" on one ovary, find cancer, then tell the ladies they will need MORE MAJOR surgery.  It seems to me they should know there's a possibility that they will find cancer and will need to remove everything.  I know the age of the patient and whether or not they want to have children is a factor...all the more reason to have the surgery done correctly and for the patient to be informed PRIOR to cutting them open and stapling them up, then telling the patient, "it ain't over darling." These ladies appeal to us asking about the second surgery and I don't blame them one bit for wondering about putting their bodies through all that again.  A second surgery could have been avoided.

Also, I noticed someone posted about having a CAT Scan after surgery and before beginning chemo treatments. I sure wish I had had one. I would know now whether the cyst they found to be malignant was there or not, immediately after my first surgery.  I agree that ALL of us should be given a CAT Scan after the hysterectomy and before chemo begins.  Our ONC's could possibly miss something during surgery that requires immediate attention.  I have no idea if my problem was a result of the doctor missing it or if it has grown there in spite of the chemo. This reduces the knowledge of the efficacy of the treatments used.

Sorry, I just wanted to vent about these same problems cropping up over and over in this forum.  I don't even understand why a GYN would jump in and want to do the surgery in the first place. They are not specifically trained in that area of medicine.  Don't they have enough to do without also doing the surgery? My GYN never considered doing the surgery herself. Thank goodness, because I would never have known to insist on an ONC to do it.
Teresa

[Kezz4life]

After reading your other letter, I can really feel for you and understand your anger. My real anger is why I have to go through it again. When I did ask him before I had the first ovary removed, he told me that I could not have both removed as I was too young and I might change my mind about children. At the end of the day, going through all of this again is very difficult, as we live in a rural area, my husband has only recently been diagnosed with epilepsy, so he is unable to drive, and leaving him on his own is another worry amongst all of this, as he has only just gone onto his medication which is'nt fully working yet. These doctors never take into consideration the patients needs, feelings or listen to us, as we know our bodies. We actually live with them.
He has also left me with 2 months to think about this, and also to let the scar from my previous operation to heal properly. Why do this when I have only probably got to have it all cut open again. The thing is my other fear is, and this might sound silly but when I have my other ovarie moved where will it go then, as I have had problems with my cervix, now my ovaries, I am now getting a complex thinking it is working its way up my body.
Kerri

[Lafnatitall]

It is true that gyn/oncs are in short supply and will not see you unless you have a cancer diagnosis; however, I was referred to an oncologic surgeon after my CT scan showed evidence of disease to perform a laparoscopic biopsy.  After the biopsy, I was then immediately scheduled for the debulking surgery with a gyn/oncologist.  

I also agree that a CT scan should follow the surgery before your first consult with the surgeon.  

Rhonda

[ChrisP2236]

The reasoning behind every other year for the CT scan is that mine is so slow growing it won't show for some time.  And with gct from what I understand they usually wait until the tumors are a little larger to remove them if there is a recurrance.  Whether it's because they're easier to remove, they want to wait to see if more tumors form, or are less likely to rupture if they're a little larger I don't know.  And it's possible they don't want to run the risk of too many surgeries since that is arguably the preferred course of treatment for gct recurrance and each surgery can make a subsequent surgery more difficult depending on location of future tumors in relation to scar tissue. Should I become symptomatic again I would immediately be referred for a scan. I have a good gyn/onc and he doesn't take anything lightly - he's pretty cautious so I'm comfortable with his schedule for me.  Thanks for your concern, though.  Big hugs, Chris P

[Teresa222]

Jan: My ONC mentioned that he thought it might have been there all along because of the length of time I bled. (100 days)  The growth was located just above the cervix.  He thinks the blood that I experienced was feeding it.  I wonder if the blood that flowed down to it picked up the cancer cells on the way? We probably will never know.  My ONC says that it is located in a very hard place to get to.  Therefore, it could have been left.
No...I don't think Dr. W did anything wrong. He is an excellent surgeon. His reputation is excellent. Dont' even think anything that is happening to me is anyone's fault.

ChrisP: I agree with Jan. If you are old enough to have cancer, you're sure old enough to have the most effective testing possible. I'd insist.
T

[Jan214]

Teresa, I don't know what happened in your case, but I doubt very seriously if Dr W left a cyst that was cancerous at the time of your surgery. What happened or what was said by your Vanderbilt guy that makes you think that?  I have a lot of confidence in him but if you have reason to believe he missed a cancerous tumor than I need to rethink my onc choice.  Is it possible that given that you have a fast growing cancer that it just could have come up later?  I am  just confused about why your current onc thinks it has been there that long and that Dr W might have overlooked it.
I know exactly when my cancer started.  It was July of 2005 but it was not found until Sept of 2006 and I had had my yearly with my GP in Nov of 2006 so obviously it must have been very slow growing.  How do they know if it is fast growing or slow growing?
As far as the gyn's go, I guess we were lucky to have gyns that had enough sense to refer us to a gynonc.  I went from my GP to a gyn and than Dr W.  There was never any question that a gynonc would do it.  I am very lucky that I got Dr's who knew what they were doing because I wouldn't have known a thing about gynoncs if Dr D hadn't referred me to Dr W.  I think sometimes Drs have a higher opinion of themselves and their skills than is warranted.   I feel sorry for those women who get jerked around and end up with a bigger mess than they would have had if it was done right.  You are right and hopefully we can get some women who truly need it to insist on a gynonc for their surgery.

CHRISP:  If you are old enough to have had cancer you are old enough to have the scans to make sure if it comes back you catch it early.  I don't like being exposed to all of that either, but it sure beats finding big ole tumors that could have been found when they were smaller and easier to deal with.

[ChrisP2236]

My gyn/onc consulted with MD Anderson after he had his own path lab confirm the original path report. They agreed on the course of action for me - hysterectomy, washes and biopsies.  At the time everything was clear, and I hope it still is.  I have twice yearly exams and was originally supposed to have a yearly CT scan, but my new gyn/onc (other one retired) thinks I'm too young (lol) for that much exposure.  I had granulosa cell tumor and from what I've read chemo isn't really effective as it's designed to target aggressive cells.  The preferred method of treatment seems to be surgery to remove the tumors.  Do you know what kind of ovca you have?  Chris P

[Texas Grannie]

Chris, I have had a slow growing cancer for 14 years. What a trip! I begin to feel worse, have my abdomen drained, feel great, start feeling bad again. I have worked for 5 of those 14 years. I had a hysterectomy, take Tomoxafen and once I took Arimidex. I had chemo 3 times. It was ineffective each time. The anti estrogens seem to work for me. If I go to a new doctor, they argue with me telling me Tomoxifen is for breast cancer. So now, I drive 3 hours to see the only doctor who seems to understand what I need. you might want to check MDAnderson. They are having a research trial to find which medicine works best for low grade, borderline, or whatever this cancer is we have. Texas Granny

[Teresa222]

This just means you would need to have a CA125 test and an ultra sound showing obvious cancer to get an appointment with the GYN/ONC.  Much of the time it is known by those tests that there is strong evidence cancer is there.  Most of us get appts. with GYN/ONC's only after our GYN's have run these tests and we're most likely facing cancer.
Teresa

[montie2]

Just thought I'd share my experience with this.  I had a tumor and ovary removed by a gyn/onc a year and a half ago.  I now have a large cyst on the other ovary so I made an appt. with the same doctor.  The lady who made my appt. said I could be seen because I was already a patient.  Then, 2 days before the appt. they called and said I couldn't be seen because I don't have cancer.  I saw a regular gyno today and asked her about this.  She told me that there was a huge, nationwide shortage of gyno/oncologists and that you can only see one if you have already been diagnosed with cancer.  I guess I will have to have my surgery done by a regular gyno and that goes against every piece of advice I've ever gotten.  I do really like my gyno and like everyone always says, most likely it's not cancer.  

[ChrisP2236]

My cancer is very slow growing and not agressive (at this point - it tends to get more aggressive with each recurrance from what I've read) so the thinking is that it could have been present for way longer than I had symptoms.  

I agree - a gyn/onc is the only way to go if there is any suspicion of cancer and we'll just keep informing people about that.  Chris P

[Teresa222]

I am sorry you had to go through so much. Do you think that having the symptoms for 18 months, means your cancer was present during that time?  My first ONC said that he thought my cancer had been active a little over six months. But, I have the agressive type, so it could have been spreading faster.

These women go through so much. If we can help just a few of them by suggesting GYN/ONC, we are doing them a big favor.
Teresa

[ChrisP2236]

I'm not sure there's an easy answer to your question because it probably varies in a lot of cases.  I agree that it seems a lot of gyns rush in and operate before fully informing the patient of their options and letting the patient know what will happen if cancer is found after the fact, however remote the possibility seems at the time.

In my case, my gyn didn't want to do the surgery because the shape of the cells in the cysts concerned her, but the gyn/onc she was consulting wanted to wait 3 months and see if the cyst "resolved itself" since my CA 125 was so low.  I didn't want to wait as my symptoms had been getting progressively worse over an 18 month period and I knew it wasn't going to get better without surgery. Had the cyst ruptured I'd have had cancer cells all over the place.  Fortunately, my gyn was concerned enough that she bagged the ovary prior to removal so there was no seeding.  But I did end up having the second look surgery for biopsies, hysterectomy, etc. - and I used a different gyn/onc.  

Had I known about this forum at the time, I'd have had the second opinion from another gyn/onc PRIOR to my first surgery and saved myself a lot of worry and downtime - like you I just didn't know the importance of seeing a gyn/onc FIRST.  I guess we need to stay on our soapboxes for the women who come here who don't know that either.  

There is no way to convey what it's like to be almost recovered from the surgery, back to life as usual, thinking you are fine and then be told at a post-op visit 3 weeks later "I'm so sorry, you have cancer."  In a sense, you end up starting over, scrambling to find a gyn/onc, worrying about whether it's spread or not because maybe the gyn missed something, wondering how they will treat you, etc.  Not to mention recovering from a second much more invasive surgery.  Chris P