Friend just diagnosed with ovarian cancer; need info.

[Liberty Belle]

She is a breast cancer survivor who's had marker tests climb to 350 over the past year or so; had all kinds of scans but they missed ovarian cancer until she started having pain and abdominal bloating. Just diagnosed today; she is in her late 60s and also has lung damage from radiation last time around.

I know this used to be a very grim diagnosis, but am hoping there are some new treatments.

Can anyone suggest options?

[Tracer]

1. I'm 3-year survivor of OC!

And am feeling great!

As far as I know -- from copious amounts of reading in the past few years and discussions with my doctor -- the treatment for ovarian cancer is pretty much standardized:

Surgery to remove as much of the cancer as possible and then 6 chemotherapy infusions, 3 weeks apart, of a combination drug regimen of Carboplatin and Taxol.

There are other drugs out there -- Gemzar etc. (and I've had them, but only after I developed a bad reaction to Carbo).

I suppose the "grimness" of the diagnosis is directly proportional to your friend's "stage". Since you didn't mention that, I can't (and won't) comment.

[Longhorn]

2. I'm glad to hear that you're doing well!

I assume your cancer hadn't spread. Did they do any scans after the six months were up to determine that you are cancer free?

I couldn't have surgery with my Stage IV uterine cancer since it had spread to my lungs. I had radiation followed by a similar regimen of carboplatin and topotecan. After about four months, the MRI, CT, and PET scans showed reduced but present tumors so I started chemo again last week. If we can get it out of my lungs, we're thinking either surgery or internal radiation.

Take care! :hug:

[Tracer]

3. Hi Longhorn ...

Back on chemo again? That's no fun, but I hope that it works for you!

Yes, I had a CT scan about a month ago and it was ambiguous to say the least.

- Doc #1 (radiologist) said he saw TWO small "spots".

- Doc #2 (urologist who operated on me) said the report said ONE "spot". (He didn't SEE the CT scan)

- Doc #3 (my oncologist) said he saw NO "spots" and thought that the radiologist was "over-reading" the scan.

So, who the heck knows.

I have another CT scheduled in November, and that should tell the tale.

[Longhorn]

4. It's definitely not an exact science, huh?

When I had the MRI and CT scan, my oncologist immediately started talking about surgery. When I asked her why she said to get that tumor out of there. So I jokingly commented that I'm glad she was talking about taking my lungs out since I needed them. That seemed to remind her that I have tumors in my lungs which is why she said I was inoperable in the first place. So then she said maybe those spots are just scar tissue. So I asked about getting a PET scan. My insurance denied it when I first got the diagnosis but I thought maybe they'd go for it now and they did and the PET showed there is still active cancer.

What boggles my mind is that if I had said, "Sure, why not?" I'd probably be scheduled for surgery right now! I'm not against surgery but I'd like to think it was for a good reason and not because my oncologist is a surgeon! My doctor at MD Anderson agrees with continuing the chemo so that's what we're doing until I get new scans. I'm not sure when that will be but I suspect after three rounds, which would make it late October.

So you're like me -- there's no test that tells us whether we still have cancer -- we just have to find it on various scans, right?

How long before your hair started growing back? I never lost all of mine (since I didn't have taxol) but it is very, very thin, especially around the hairline. I'm getting tired of the wigs so I started wearing wide headbands and it looks pretty good. My students didn't look shocked when I went au naturel last Thursday (they know about my diagnosis.)

Stay strong! :hi:

[Tracer]

5. I don't quite understand...

... why you couldn't have had surgery to remove the uterine cancer. Not being a doctor (although I did stay at a Holiday Inn Express), wouldn't surgery have removed a source of the cancer --- and then they could have concentrated on the lung problem?

I've had two surgeries. One, a hysterectomy and two, an operation to remove the small regrowth that had wrapped itself around my ureter. I was fortunate to have a oncological surgeon (both times) who is rated "Best of Boston" and works both at Dana-Farber and Brigham and Womens. (I understand that MD Anderson is also one of the best).

Hair. Since my last chemo in April, my hair is about 1 1/2 inches long. It started out very thin (worry!!!), but has grown in nicely and I kind of like the look. It certainly is easy to take care of. I never wore a wig, but made do in the winter with fuzzy hats and bandannas.

[Longhorn]

6. At the time of my diagnosis in March,

I was told that the main reason for surgery is to get rid of the cancer and since it had already spread, it was like "shutting the barn doors after the horse is gone." Also, the tumor was well into my cervix and I was told they couldn't get clean margins. My cervix now looks pink and healthy as the tumor as shrunk back into the uterus. So now there are presumably clean margins but the surgery still seems unnecessary as long as there is cancer in my lungs (and a lymph node next to my uterus,) so that's why I found her suggestion somewhat confusing. I intend to ask more about it at my next visit.

BTW, they really aren't sure if I have uterine or cervical cancer as the cells were undifferentiated, meaning they can't tell where they originated. However, I have had normal PAP smears every year, including just one year before the diagnosis. The PAP smear is supposed to detect about 80 percent of cancers so it's possible it was cervical but uterine just makes more sense to me, especially since that's where the bulk of the tumor was.

It's good to know that your hair is growing back so quickly! I didn't realize that you had so recently finished chemo. Did you take Emend to help you with the carboplatin? I only experienced nausea a couple of days after I finished my first round and I learned to start taking the compazine BEFORE I needed it. I've only had a few minutes of queasiness after seven rounds. My schedule this semester is perfect for chemo (:eyes:) because I only teach Tuesdays and Thursdays and I have time on Thursday between classes to get the topotecan and potassium (about two hours.) I get premeds, potassium before and after, carboplatin and topotecan on Wednesday and just topotecan and poassium hydration on Thursday and Friday. I take the Neulasta shot home with me and my husband gives it to me to save another trip to the cancer center. I've handled the chemo really well -- just some weakness and fatigue that gradually gets better for the first week after. I am able to teach by the following Tuesday but I sit more than stand.

How long did it take you to recuperate from the hysterectomy? If it's in my future, I'll need to plan it around my teaching schedule, if possible. I'll bet you're enjoying life as a "normal" person now that you're getting stronger! I got a taste of it in August when I skipped a chemo round while I got the scans. We went on vacation and I felt better every day, only to start over again. It's hard not to feel poisoned by the chemo but I remind myself that it's the cancer that's getting poisoned! :hug:

By the way, I'm 53.

[Tracer]

7. Yikes. Neulasta!

The $3,000 shot!

I had one of those to pump up my white blood cell count.

Frankly, I never bothered to ask what else they put in the chemo drip (other than the 2 chemo drugs). I do know that there was an anti-emetic in there (although I never was nauseated at all). The problem with Carboplatin is that a lot of people become sensitized to it after several infusions. I had a bad anaphylactic reaction to it last December (was unconscious). Supposedly, there are trials to de-sensitize people -- but my doctor didn't want to take any chances, and switched to Taxotere.

I recuperated from both operations in no time. I had maybe 2 days of bad discomfort and 4 or 5 more days of lesser discomfort. (Hugging a pillow to my stomach and fearing sneezing!)

[Longhorn]

8. I'm actually getting cisplatin. I was thinking that carboplatin was the trade name

but I think they're two different things. I think the trade name of cisplatin is Platinol. I don't know if that will make a difference in long-term side effects.

Did you have a vaginal hysterectomy? If so, I'm very encouraged by your quick recovery! Since I only teach two days a week, I could have the surgery with very little time away. I was afraid I needed six weeks to recover.

I appreciate you sharing your experiences. :hug:

[Tracer]

9. No, it was the regular "bikini-style" surgery.

The surgeon needed to muck around in there to make sure that there was no spread, and also needed to remove some lymph nodes and part of the omentum.

I was up and walking (shuffling) around the next day. They insisted that I do so to prevent clots.

After 5 days, I could get around fine.

[Longhorn]

10. That's the kind of surgery I meant anyway.

I don't think they do vaginal hysterectomies for the very reason you mentioned -- they want to see as much as they can.

I had laparoscopic lap-band surgery in November that involved about five incisions. I had it on a Thursday and was back to work by Tuesday. If I ended up with a hysterectomy, I'd take off more time and even schedule it between semesters if I could. We'll see what happens.

[Liberty Belle]

11. I'm so glad you're doing well! Unfortunately my friend's cancer has spread, and it looks bad.

An MRI shows it's spread to her intestines, liver, and elsewhere in the abdomen; abdominal fluid is full of active cancer cells so they now say it's inoperable.

She started chemo today (Taxol, which she had before for breast cancer). But privately the doctor has told her husband the odds are less than 50-50 that she'll make it through the next six weeks. All so sad...

More bad news for our family this weekend. My mother-in-law who is 80 went in for a "routine" colonoscopy and the doctor punctured her colon. So she had emergency surgery but is still in ICU. She's the third person i've known who got a ruptured colon from a colonoscopy. I don't know which is worse - risking cancer or the risk of the procedure. One of the other two people died and the other nearly did, with a massive internal infection.

On the other hand, I lost a good friend 2 weeks ago to colon cancer, which wasn't diagnosed until stage 4 because her stupid military doctors refused to order up the tests, insisting she had MS instead.

[Tracer]

12. I'm so sorry for your friend.

It is so important for women to learn about the symptoms of OC, even though they are often subtle. And to press their doctors to investigate more.

Sometimes I think that doctors look for the most common diagnosis, rather than the less obvious.

For instance, the very first time I went to a gynocologist for some strange symptoms, he said he thought I had an ovarian cyst. I looked him straight in the eye and said "I'm worried that it is cancer". He looked startled, but I could see the wheels turning in his head --- and he had me in the hospital 3 days later.

[Liberty Belle]

13. I'm glad you were proactive.

I had ovarian cysts years ago but the pain was so excruciating I knew something more was wrong. I had a new HMO doctor who didn't believe me and then went on vacation without ordering the results of my tests.

I literally crawled up the stairs of my old doctor's office and collapsed on the floor. He took one look, put me in the hospital and did surgery. Turned out I had endometriosis that had grown into the ovary, then back out again and wrapped itself around the appendix. Needless to say I had a few spare parts removed, but felt like a new person afterwards. Just glad it wasn't cancer, which I was afraid of.