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Time for a second opinion?

beckyracn's picture
beckyracn
Posts: 324
Joined: May 2009

I am a cervical cancer survivor (26 months post treatment for IVA) and am wondering...is it time for a 2nd opinion? I recently had a pelvic MRI due to new abd. developments, which I had to request a transcript as my docs never contacts me with results. The report reads..."there appears to be a fibroid in the posterior body of the uterus causing extrinsic compression of the endometrial cavity. This was previously noted and has not significantly changed." This has never been reported in any of my scans, new news to me. And I am six years postmenopausal on top of internal/external rads...fibroids are estrogen/progesterone related. A bit confused with this. Shouldn't any fibroids have shriveled up by now?
Then...There is "some suspectibility artifact from a tiny metallic foci which was present on 2/18/10." First time this has been in a report...I'm not liking these surprises.
It gets better yet..."There is a right ovarian cyst close to the pelvic sidewall measuring approx. 2 cm. This was present previously and has not changed." More 'new' great news.
I have copies of all the transcripts of all my scans since the beginning of this whole journey and not once has any of this been printed in the reports.
It's the same hospital and the same radiologists that are writing these reports and...one says I have a stump left from surgery. The next one reads I'm all intact. The next one reads cancer surgically removed. The next one reads everything is there...and so on.
The docs never call me with the reports and when I confront them they say everything is normal. None of this sounds 'normal' and I am angry and confused at this time.
Cervical dysplasia appeared again in March and the gyn says, "We'll wait and watch...f/u every six months as scheduled."
Do I have the right to feel angry? Doesn't it sound like it's time for a second opinion?
Thanks for listening...I needed to vent.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

I know how you feel. However, if you ever received a full copy of your medical records, it would make your head spin! It always sounds soooo different (and scary) than what the doctor tells you. When you first read it, it is scary. Put in down and when you are calm, read it again and you probably wont feel the same way you did the first time.

With the scans, I had one redone because it said in the report that I was an 89 year old woman. I was 47 at the time! A lot of my reports indicate "normal surgical changes". And it depends on the radiologist reading the reports that you can get different reports.

You said you requested the report, but what did the doctor say? Here is a key, if you know that your doctor will order a scan on your next visit, ask to have the scan PRIOR to your visit. This way, you can talk to the doctor at your appointment about the results. I started doing this and this way I made sure I understood by repeating what they were saying to me.

In July of 2009, I was told I had a mass but my radiation oncologist told me it was in all of my scans since 2005! He was watching it thinking it might be scarring.

Also, when I was getting infusion, the nurse there would let me look at my records. I made them change several "mistakes" in my grading, etc. I would repeat to the doctor what exactly do I have. Once I found out the exact, I told them to remove the one that wasn't correct.

Although I have changed doctors, my newest one I haven't received one report whatsoever. He just tells me that they got everything (my recent surgery) and that my PET scan was good. Maybe it is better that way. I don't know. But I know if it came down for me needing more treatment, then I would certainly want to see the charts.

If you are questioning yourself about 2nd opinion, then do it. It must be your gut feeling. I have had 2nd and 3rd opinions. Go with your instincts, because they are usually right. Doctors and nurses are so busy and like it or not mistakes can happen.

From now on, when you are getting a scan, indicate to them that you want a copy sent to you and for any tests you might have.

I hope this helps!

By the way, congrats on the 26 months!

Hugs to you!

Kathy

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Becky:

They did not give you a hysterectomy? Well if you are having problems now, I would probably go get a 2nd opinion from another hospital.

I had a laparoscopy and an internal sonogram before my hysterectomy for severe endometriosis. They did not do a scan because they did not think I had cancer. My only problem was the pain which they believed was from the scar tissue. However, after a total hysterectomy, the pathology came back that I had endometrial adenocardinoma and it was found in my uterus and my one ovary (which didn't show on the sonogram). The doctors were surprised as was I.

Can you get a PET Scan?

Kathy

beckyracn's picture
beckyracn
Posts: 324
Joined: May 2009

Thanks for responding Kathy. No, I did not have a hyster. I went into surgery prior to treatment for a radical hyster., because the CT only showed the cervical mass, and once they got in there they found the mets. Hence, they took a bunch of lymph nodes and stapled me back up. They say I am ineligible for surgery now due to scarring. They kindly explained it as, "We melted all your insides together." My surgical oncologist said that only as a last option would they attempt surgery, this would be if the mass reappears in the female parts, and we would have to sit down and have a serious talk first. Yes, a pelvic exteneration.
Your right about following my gut feelings. I am an RN and had worked side-by-side for years with the docs that are treating me now and I've seen both the good and bad side of them. Now, I get to experience them myself. It hasn't been so much fun. And my gut is telling me to get another opinion. One of my biggest peeves is...the same radiologist has read my scans and each time he writes it up he's either added body parts or taking them away. Maybe he's bipolar!
The docs don't think a PET scan is any more effective than a CT, so... And no one is following protocol for follow up scans. I guess everyone thinks someone else is going to take care of that, but no one is taking care of anything.
Time to take things to the next level...I would like to be around a few more years!

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Becky,

I would definitely get a second opinion. If they are indicating that you are scarred and that they melted your insides, you are probably experiencing bowel problems or the beginning of it.

I know all about scarring. I was full of scarring. I had three C-Sections which I believe caused my endometriosis. Then I had the three more abdominal surgeries. a) hysterectomy b) staging c) recent surgery. So I have a lot of scarring.

My initial hysterectomy was in 2005. In July of 2009, a doctor told me that I had a recurrence from a mass he saw on my CT Scan I had done in July. (although this same mass was there from 2005). I never had a good repoire with this doctor and didn't like his approach, so I got a second opinion. He did a biopsy which said the small mass I had was positive. He sent me back to the other doctor. All the doctors there said that it couldn't be operated on, wanted me on immediate chemo to shrink it, try surgery, but that I would probably end up with a permanent colostomny. I had PET Scans, CT Scan and a MRI all indicating that there was no cancer, so.....

I went totally out of my state and went for a 3rd opinion and in February of 2010 I had surgery. They were able to remove EVERYTHING and best of all everything was NEGATIVE! Also, no colostomy!

I wasn't offered to have a second opinion and when I didn't do his biopsy and chemo regiment immediately, he wrote on my chart "patient seeking help elsewhere".

a PET Scan can light up anything that is cancerous, where a CT scan might not.

By the way, its a full moon!

It must be hard when you work with a group to try to go out of the system. But like you said, you would like to be around a few more years and you need to be do bother the docs! lol.

I wish you the best,

Kathy

beckyracn's picture
beckyracn
Posts: 324
Joined: May 2009

You are correct about the abd. troubles Kathy. I've had nothing but trouble with it and the bladder. The answer to everything has been "scar tissue and adhesions...nothing we can do." Up until April of this year, my diet was frequently a liquid one for weeks on end while endured yet another bowel episode. No one had any answers for me...so I found a regimn that helped put me on the mend (with the help of my wonderful acupuncturist). Those problems have lessened and I can actually eat real food, but new ones have developed.
I've requested a PET scan, knowing it could provide better detail, as I would never have had surgery the first time if they'd done one. The CT did not pick up the mets.
I contacted Cancer Treatment Centers of America last night and expect to be speaking with them tonight. They might be able to offer some hope. I had an experience with Roswell Ca Institute, which is the next closest facility, during my tx stage and will never go back there.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree that it would be good to get a 2nd opinion and even a 3rd. Most insurances cover the cost of 2nd opinion.

But please get a gynecologic oncologist who are specialists in this area. I'm impressed that you have been so good about getting your documentation - as others have said, information is power.

My best to you. Mary Ann

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