Hello ladies,
I am 29 years old and a few months ago my ob-gyn found a mass of my right ovary (never felt any symptoms). On July 24th they performed a laparoscopy to biopsy the mass, once in surgery they took out my right ovary and fallopian tube because according to the oncologist it did not look right. On my next appointment with oncologist he said that the mass was a Granulosa Cell Tumor, he also said he was going to take my case to the tumor board because of my case being rare. He mentioned that three things can happen 1. Start chemo 2. Have surgery to biopsy other parts and stage me OR 3. do nothing just monitor me every three months. I got a call from him about a week later saying that he was just going to watch me every three months. In a way I feel relived but at the same time nervous I don’t really know what to do. Any advice or suggestions would be great to help me get through this. Thanks!
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Help
- By rose408
- Posted September 10, 2009 at 1:51 pm · 12 replies
- In OCNA Annual Conference
- Shared with the public
Explore topics in this discussion:
12 replies
- Oldest first
- Newest first
- By 10yrsurvivor
- Posted September 10, 2009 at 5:27 pm
- Report post
It is always good to get a second opinion. I don't know anything about your type of cancer, but sure can understand it would make you nervous. Keep us posted and God Bless. Linda
- By Lemona
- Posted September 11, 2009 at 11:00 am
- Report post
Is your oncologist a gynecology oncologist? If not, I would certainly try to see one and definitely get a second opinion. Did your doctor explain why he wants to wait three months? Did he do a CA125? Definitely get a second opinion and ask for the CA125. Good luck and keep us posted.
- By cdbart
- Posted September 11, 2009 at 3:33 pm
- Report post
Try a second opinion. Did you have a PET? Was the tumor bioposied? Were there cancer cells? What does the reseach say about the type of tumor? What gives this docotor the right to make the decision for you......Find the best gyn ocologist in 100 mile area and talk to him or her asap.
- By rose408
- Posted September 11, 2009 at 4:09 pm
- Report post
Thank you for the feedback... I feel like I need to ask more questions to my doctor because some of your questions I don't even know myself. Yes, my doctor is a gynecology oncologist. I requested a copy of my medical records because I have a doctor's appointment today with my regular doctor and want him to know what is going on with me and ask him of a good doctor so I can get a second opinion. From some of the paper work that I have it says that my CA-125 is 11 but I don't know if this was before my surgery or after since I've done so much blood work in the last month. My doctor also told me they did Inhibin A and Inhibin B test and he said it was normal and a CT scan which also said it looked good. When they did my surgery the doctor also did some washings and he did say that there were cancer cells.
My husband called the office so he can talk to the doctor but he just does not return the call. I know when I go for my second opinion I need to ask questions because I need be more informed. Thanks!
- By Heather2012
- Posted September 11, 2009 at 5:03 pm
- Report post
The fact that there were cancer cells in your washings would make me very nervous about a "watch and wait" approach. And, the fact that the doctor doesn't return your calls is another red flag.
I would definitely, definitely get another opinion, and quickly.
- By lovemnms
- Posted September 11, 2009 at 6:27 pm
- Report post
I agree with Heather 2010. I see some red flags here! Found cancer cells, not returning calls, and watch and wait approach?! I think I would get a second opinion and ask for another CA125.
Your health is too important not to.
- By Bymyside247
- Posted September 11, 2009 at 9:11 pm
- Report post
Get copies of EVERYTHING!!!! Most places are providing CDs of scans performed. You have a right to them. Ask for copies from radiologists, gynocologists, the review board reviewing your results. Make yourself a binder and take it with you to the docs every time you go. :o)
- By nana55
- Posted September 13, 2009 at 7:09 pm
- Report post
I think it all depends on the type of cancer, is it a slow growing type or fast? Mine is slow growing and doesn't respond well to chemo. I have scans, sometimes I have chemo or surgery, it depends on how fast the cancer is growing at the time. They have been watching me for 30 years. It is so difficult when you are doing nothing but waiting. You feel like you need to be doing something. Sometimes I just know when it is time to try something else and take charge.
- By Jill13
- Posted September 14, 2009 at 12:57 am
- Report post
I agree with the ladies above -- I would go for a second opinion. Having cells in the washings would also make me nervous -- I am not sure the "wait and see" approach makes the best sense.
Even if they did not perform a staging surgery, they should know the Grade of the Cancer from the Biopsy of the Ovary they removed and that is also a good indication as to whether or not treatment is necessary.
I had my slides re-read and was glad I did -- originally I was diagnosed with just Germ Cell But the second lab that read them determined that my Cancer was indeed comprised of 3 different types of OVCA.
You have to be your own advocate -- if you are not comfortable with the approach they are taking/suggesting, you have to speak up.
Good Luck!
- By Plonanon
- Posted September 14, 2009 at 1:28 am
- Report post
I know nothing about your particular type of tumor. However, full staging by a gynecologic oncologist is normally considered extremely important. The staging + pathology tells you what type of tumor it is (for example, granulosa cell), what stage it is in (how far it has spread, or not spread), and what grade it is (how fast it is growing). For most--or maybe all--types of ovarian cancer, this information is ESSENTIAL if you want to form a treatment plan.
I am astonished that this doctor is taking a watch and wait approach, but maybe there is something about granulosa cell tumors that I don't know. I would also try to find others (online) who have had this type of tumor, and I would consider having my pathology slides read by a second pathologist. It amazes me how often pathologists find only part of what is there, meaning they find tumor type x and it is really two types of tumor, or they say it is grade 1 when it is really 1 and also 2.
Good luck.
- By kayb
- Posted October 3, 2009 at 1:57 am
- Report post
Hi-I was diagnosed in 2005 with granulosa cell tumor. The first time, they did a laparoscopy, and I had to have a rt. ovalrectomy. They told me I had to have a hysterectomy, which I declined. So they watched me for several months. A year later, it returned. I had a complete hysterectomy, plus chemo. They did not want me to wait to start chemo. I did a regiment of 5 days straight every 3 weeks, for four months. Very tough stuff! Two years later, it returned. My doctors decided to treat it with chemo because they were concerned with doing surgery again. So they tried treating with chemo. It reacted, but three months later, it began to grow again. So now, I am facing surgery again. This tumor is a --thank God-- slow growing tumor, that can be watched. It's tricky also--pep scans did not pick it up. Several times, my inhibin level were normal, and did not express inhibin. Now, for some reason, it is expressing inhibin. CA125-also was normal. What I am saying is this is a tumor that can be watched every three months, but also, if you become physically ill in some way, get invasive with your doctor! I have a very good doctor--Dr. John Lovecchio @ northshore hosp in ny. I wished I'd listen to him the first time he told me I needed a hysterectomy!
- By cubsmom
- Posted October 3, 2009 at 8:31 pm
- Report post
Hi all. What is an inhibin level? I have only had CA-125 tests and PET/CT Scans done.
Thanks. Karen
Add to the discussion