Third Opinion ?? - Cancer Concerns - GYN - HysterSisters
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  #1  
Unread 05-30-2004, 09:00 PM
Third Opinion ??

Hi Sisters, I was just wondering what everyone here thought about getting a third opinion? I had a total hyst. in Dec. and they found Stage 1 C borderline ovarian tumor. No further treatment neccessary. I then went in January to a gyn/onc. for a second opinion, he looked at my slides and said he agreed with my staging and diagnosis from my gyn surgeon. However..... One day while at the office of my gyn, I read a letter in my file written from the onc. to my surgeon saying that he is virtually 100% positive that I still have other areas of lmp tumor left in my body and that from looking at my slides, he believes I have a very high chance of recurrance. (significantly higher than 15%, which is the quoted recurrance rate for my stage) It also states that from hearing about a few things found in my pathology (endosalpingiosis and psamomma bodies?dystrophic calcification?) that he thinks my borderline cells are at the more malignant end of the spectrum (his words exactly), and that due to the interpretation of histology he could say that I was staged at a IIIA, but that as of right now he would concur with a Ic. Right now I am getting CA 125s every three months and so far, so good...in feb. and 11 and in May an 8.1 ! The week before my surgery it was a 97. I am scheduled for a colonoscopy at the end of this week for two rather severe bouts of rectal bleeding, but I really think this may be only due to the wonderful hemmerhoids! fun, fun..... ANYWAY, I made an appt. for myself and had my slides sent to Johns Hopkins in Baltimore. I see a specialist there on June 22..luckily I have a friend who lives in that area. Do you guys think I am just having a bad case of cancer head...I kind of feel like I dont actually have a set diagnosis, if I hadnt have come across that letter I would not know any of this, which makes me feel untrusting of my 2nd opinion doctor. I dont know what is coming at me.... so have any of you seen any of the dr. at JH? I know we can't talk about specific dr.s in this forum, but please feel free to p.m. me if you know anything..I would appreciate it...I am SO, SO confused right now...I don't know if I am making a mountain out of a molehill ( so to speak) thanks again for listening to my ramblings....Lisa
  #2  
Unread 05-30-2004, 09:27 PM
Third Opinion ??

I have Stage 1c and am starting chemo this week. I'm very glad to hear you're getting a third opinion and Johns Hopkins is an excellent place to get it - they have a great website for Ovarian Cancer.

I don't know anyone there but could get you the name of someone at Penn if you want to see someone there.

I don't think you have a bad case of cancer head, I think you're being very prudent.

Good luck and God Bless.

TAH, Stage 1c, 6 courses Taxol and Carboplatin starting 6/2
  #3  
Unread 05-30-2004, 11:37 PM
Third Opinion ??

Hi Lisa ,

This is just my opinion, and I don't know any Dr's at John Hopkins but it sure does not hurt to get a another opinion at at major hospital like JH. I think there is a reason you read that letter and it raises some concerns that need to be adressed. Just putting your concerns to rest is a good enough reason to seek an opinion at a hospital with such a good reputation.
  #4  
Unread 05-31-2004, 12:13 AM
Third Opinion ??

I think its very important for you own peace of mind that you do whatever you need to do....if you need a 3rd opinion or 4th you just do it

I so hope all goes well for you *big hugs*
  #5  
Unread 05-31-2004, 04:52 AM
I've Been To Johns Hopkins

Lisa,

I think your idea to go to Johns Hopkins for another opinion is a good one. I would want to make sure, especially in light of the letter you saw in your file, that your treatment plan and follow up care are appropriate given the particular facts and circumstances of your case.

I went to Johns Hopkins for a second opinion before my surgery for endometrial cancer in 1999. I was very satisfied with the gyn-onc I saw there. He was extremely thorough and personable and took the time to explain everything to my husband and me completely, even drawing diagrams to assist us in understanding the information.

Incidentally, he was the lead researcher in a study that resulted in the American College of Obstetrics and Gynecology issuing an opinion that women with known or suspected ovarian cancer should be referred to gynecologic oncologists for treatment. I will PM you his name.

Good luck at your appointment, and please let us know how you make out.

MoeKay
  #6  
Unread 05-31-2004, 08:12 AM
Third Opinion ??

s Homerpoppy

Although Mimny started chemo for stage IC, her cancer was most likely not LMP.
Johns Hopkins are the national experts with LMP. You won't find a better third opinion.

karenann
  #7  
Unread 05-31-2004, 08:29 AM
Third Opinion ??

Yes, the pathology dept is expert at the diagnosis of LMP ovarian cancer - there are many sub types and prognosis can very quite a bit depending on the type. The pathology department runs and excellent website.

I live in the area and had my slides redone at Hopkins. I found the pathologists to be very involved with oncologists (either yours or theirs) throughout treatment



Dorrie
  #8  
Unread 05-31-2004, 09:03 AM
Third Opinion ??

Hi Homer,

I think that a third opinion, in your case, will help the situation.

I assume that the doctor that did your hysterectomy was not an oncologist/gyncoclogist and with the slightest chance that cancer was to be present, I am sorry that your doctor did not recommend one for the surgery. They are the experts in the field.

I, like many others here, had 6 treatments of taxol and carboplatin for ovarian cancer and according to my oncologist and many others, that is the standard treatment for ovarian cancer no matter what the stage.

Please let us know how your next opinion goes.
Rosalie
  #9  
Unread 05-31-2004, 03:11 PM
Third Opinion ??

I agree with the others. What an excellent place to go for a 3rd opinion. You should seek as many opinions as you feel you need to make an informed decision.

's
Ruth S
  #10  
Unread 05-31-2004, 04:42 PM
Third Opinion ??

Another opinion is not going to hurt anything it is your body and you need to have peace of mind. You need to put what you read at rest. I do not feel you are having a cancer head, you are taking control as best you can.

Hang in there keep us posted.

s
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