Ovarian Cancer: Am I in danger by waiting too long to start chemo? - Cancer Concerns - GYN - HysterSisters
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Am I in danger by waiting too long to start chemo? Am I in danger by waiting too long to start chemo?

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  #1  
Unread 04-22-2009, 05:14 PM
Am I in danger by waiting too long to start chemo?

I guess I should change my name from Happyat63 to Confusedat63. I just got off the phone from my gyn onc and he is pressing me to make a decision between a second staging surgery and starting chemo for 6 sessions. It is now almost 8 weeks since my surgery, but my gyn onc has been out of town for 3 weeks. I only saw him 3 weeks after my gyn did my surgery. I was diagnosed as stage 1A, grade 1 ovca, but the gyn onc says that the staging was incomplete, since no random biopsies were taken. He also thinks that more lymph nodes should have been taken, but my gyn said that there aren't many more to take.

I now want to get another gyn onc opinion, but it is getting late. I asked my gyn's office to get me an appointment with another respected gyn onc, but I don't have an appointment yet. That is my fault. I should have asked for the 2nd opinion appointment 3 or 4 weeks ago, but my gyn didn't think it was necessary. I talked to my primary care physician a couple of days ago and he thinks I should get another opinion. The insurance case worker told me the same thing a couple of weeks ago.

Am I waiting too long to start chemo? My gyn onc doesn't think that there could be any cancer of any size left. He thinks that any possible cancer would me very small. Since it was grade 1 from both the original pathologist and then a 2nd opinion from a gyn path, I would expect that anything would grow very slowly. Am I putting myself in danger by waiting for a 2nd opinion? should I just start chemo or have the surgery as soon as possible and forget the 2nd opinion? The current gyn onc would do staging surgery with a vertical open abdominal incision. My gyn and PCP thought that it could be done laproscopically, but the current gyn onc doesn't agree. The new gyn onc who I am trying to get an appointment with does a lot of surgeries laproscopically. I found a report from 2002 and he is listed as doing the most laproscopic hysterectomies of any listed doctor in NY state. I don't know about him doing any other surgeries laproscopically. I don't know if he would suggest staging that way. I want to get the second opinion, but I am afraid I am waiting too long to make a decision.
  #2  
Unread 04-23-2009, 06:33 AM
Re: Am I in danger by waiting too long to start chemo?

Well, first off, Happy/Confused at 63 a gyn should NEVER do the surgery if cancer is suspected. They are not trained or prepared to do it properly.A gynie/onc goes through much more intensive training and they know what they are looking for. Second, a correct surgery for ovarian is a full abdomiinal incision. It is the only way they can see the whole cavity.

Now for the good aspect it is grade 1 which has been confirmed. There are a few ladies here with grade 1. It does grow slower than grade 2,3. Often chemo is ineffective against grade 1 but usually the initial firstline treatment of carbo/taxil is done anyway. This does NOT mean you can dally to make your decision. Nor limit your options to only lapriscopic surgery. I know that sounds less invasive and unpleasant, but this is cancer, not just a hysterectomy.

Was the wash sent to pathology? Was the cancer contained completely or was it elsewhere in your abdomen? These are all important decisions. You said what your grade was, but what is your stage? This would all help in making the decision.

Good luck.
  #3  
Unread 04-23-2009, 07:35 AM
Re: Am I in danger by waiting too long to start chemo?

Thank you for your response. As I said in my question, I have been staged as 1A, but my new gyn onc said that the staging was incomplete, with no random biopsies. There are also 2 reasons why I didn't see a gyn onc from the beginning. The first is that my gyn didn't think there was any cancer until surgery. The second is that I didn't even know that there was such a specialist as a gyn onc. The nearest one is 80 miles from home.

I am not delaying my decision because I just can't make up my mind. As I also said, my gyn onc was out and unaccessible for 3 weeks and then didn't call me back until 5 days after he was back in the office. The office staff didn't tell me that he was out of the office the first time I called, so I didn't know that he would be out of the office for 3 weeks until 1 week later. I do wish that I had made an appointment for a second gyn onc opinion 3 weeks ago.

As to laparoscopic staging, I have read on the Sloan Kettering site that they are now doing ovca staging laparoscopically and I have been told that M D Anderson is doing the same. I don't know if any other doctors are doing that or not, but the gyn onc who I am trying to get an appointment with does a lot of laparoscopic surgery. Here is a quote from the SK site, "For cancers that appear to be confined to the ovary, our surgeons have led the way in adopting less-invasive techniques such as laparoscopic surgery. ... Memorial Sloan-Kettering surgeons have found that staging early-stage ovarian cancer with minimally invasive surgery is equally effective and accurate as staging during open surgery."

My gyn onc also told me before he left town that I had time to make a decision because of the suspected stage and confirmed grade. I didn't see him until 3 weeks after surgery and then he ordered the slides sent to a gyn path a week later.

Washings taken before the ovary removal and were sent to both pathologists and the opinion of both was that there was some inflammation, but no cancer. The gyn path, who is also 80 miles from home, is one that doctors from the entire area of central NY use for gyn cancers. My gyn also uses him for second opinions and the 2 gyn onc's that I am using/trying to see use him for the first pathology, since he is in the same city as they are and well respected.

I don't know what it is about winter, but first my gyn was out of town for 3 weeks and then the gyn onc was out of town for 3 weeks just when I was trying to make a decision. I would probably just go to Sloan Kettering, but they are not in my insurance network and we can't afford the cost of an expensive operation in NYC.
  #4  
Unread 04-23-2009, 08:23 AM
Re: Am I in danger by waiting too long to start chemo?

You really need to discuss whether waiting is OK and for how long with the doctors who know your case. I suspect the gyn/onc is thinking it is time for a decision as he now is pressuring you for one. Hopefully, as you want to see this gyn/onc who does lap surgeries, one of your current doctors may be able to get you a rush appointment with him or perhaps another top notch lap specialist?
You might also want to phone SK and ask if laproscopic surgery is considered the best in a case like yours - not for a hysterectomy but to obtain more accurate staging after a hysterectomy. If by chance they say no, your decision could be easier. Good luck.
  #5  
Unread 04-23-2009, 01:42 PM
Re: Am I in danger by waiting too long to start chemo?

I did ask my gyn's office to make the appointment with the second gyn onc. I asked them 3 days ago. They made the appointment with the first gyn onc and got me in in 1 week. The nurse coordinator just called me back and told me that I have an appointment in 13 days. That is longer than I would like, but I have essential family business next week and will be out of town and 270 miles away the entire week. It interferes with my health care, but I need to do it. The new gyn onc is also 80 miles from home, it the opposite direction. I guess I will just wait until I see him.
  #6  
Unread 04-23-2009, 03:29 PM
Re: Am I in danger by waiting too long to start chemo?

You're probably lucky to get into a well respected gyn/onc in 13 days. Hope after seeing this specialist it will be easier to make a decision on whom to use and which course to take. May the time go swiftly. Best wishes.
  #7  
Unread 04-23-2009, 05:06 PM
Re: Am I in danger by waiting too long to start chemo?

dear happyat63...i had a similar experience to yours except my ovca turned out to be stage 3, grade 3 and there were some seedings on the peritomeum (abdominal lining). my gyn did the first surgery on feb. 19/07 where he found the cancer and removed the mass intact; however, there were other complications which he was not qualified to deal with. my second surgery was 4-1/2 weeks later on mar. 22/07 where a gyn/onc performed de-bulking surgery, also a bowel re-section and removed omentum and 4 lymph nodes (one was suspicious for cancer but not confirmed). i started chemo approx. 4 weeks later, every 4 weeks for 6 treatments and i have been in remission for almost 2 years and feeling great. so, i waited approx. 9 weeks after surgery to start chemo and it worked out for me.

i agree with faithfirst that many surgeons opt for the open vertical surgery in order to get a good look around. every case is individual and maybe new methods have been found which are less invasive yet still have the same results. btw i had not heard of a gyn/onc either but wish i did...i could have avoided having 2 surgeries and got started sooner on chemo.

best wishes to you for finding a gyn/onc that you can trust to guide you through the decision-making. let us know how you make out.
  #8  
Unread 04-23-2009, 06:06 PM
Re: Am I in danger by waiting too long to start chemo?

Thanks peggiesue and nogreatmischief. DH did some research on the web this evening and found the following.

M D Anderson states that they do laparoscopic second-look surgery and staging surgeries.

He found a report from Mt. Sinai Hospital in NYC where they discuss several studies about the effectiveness of laproscopic staging surgery for second surgeries because of incomplete ovca staging during the first surgery and that it is an effective method to do a second staging. One study of 84 women with ovca resulted in 69% of them being able to be re-staged laproscopically. Over half of the remaining 31% had to be converted to laparotomy because of very advanced cancer or bowel complications. SK also says that they do staging laparoscopically, but don't specifically say that they do it for second staging surgeries. It appears to be typically used for early stage ovca, which is what I have (supposedly).
  #9  
Unread 04-23-2009, 06:13 PM
Re: Am I in danger by waiting too long to start chemo?

happyat63...i applaud you for the research you and hubby are doing. it might be interesting to get an opinion from the opposing side, but time is of the essence. just a thought.

wishing you all the best. take care.
  #10  
Unread 04-23-2009, 06:29 PM
Re: Am I in danger by waiting too long to start chemo?

Mischief, by the opposing side I assume that you mean doctors who don't use laproscopy for staging. If so, that is my first gyn onc who I saw. He seems very good and gets good reviews from patients, but he is very conservative. Before my first appointment with him, he spend part of his weekend reading all my file and was very prepared when we got to see him. He gave us his opinion and answered all our questions. He spend over an hour with us. He also called me to answer 6 followup questions that I faxed to him and called us at 6:30 last night to discuss my decision. I trust his opinion, but he does very little laproscopic procedures. He is a certified Di Vinci surgeon though, but he never mentioned that. Here is something else from Anderson that DH just found:

"Dr. ******** reports that “laparoscopy has become increasingly more popular at M. D. Anderson in evaluating patients with adnexal masses and in those patients with suspected early stage ovarian cancer.” In addition, laparoscopy is also used to determine the stage of cancer in patients who have not had complete staging (tests and exams that show the extent of the cancer), or whose cancer diagnosis was made postoperatively."
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