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Newly Diagnosed- Advice Needed Newly Diagnosed- Advice Needed

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Unread 12-29-2001, 12:23 PM
Newly Diagnosed- Advice Needed

Hi! I was wondering if anyone out there could give me some advice. During a routine pelvic exam, my doctor found a "mass". She sent me for an ultrasound which showed an 8.9 x 8.5 "complex pelvic mass". She and her collegues believe it is probably a degenerating fibroid, but cannont rule out some sort of malignancy. I am scheduled for surgery on 1-11. I am suppose to decide if she should just remove the fibroid (if that's what it turns out to be) or have a hysterectomy (just the uterus to avoid further problems).

I am scared to death that it will be cancerous! I am still in a state of shock because I had no symptoms whatsoever. Has anyone else had this type of diagnosis? What did it turn out to be and what procedure did you have done? I guess I shoud tell you that I'm 41 and have 2 young children. Sorry this is so long. Thanks for your help.
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Unread 12-29-2001, 12:52 PM
Newly Diagnosed- Advice Needed

Hi Emmie!

Your story sounds alot like mine! I was in for a routine pelvic exam, DR felt a 'mass', ordered ultrasound, referred to GYN specialist, who in turn recommended hysterectomy. I had no symptoms (that I saw as symptoms at the time). I am also 41 but I do not have any children.

I was very scared! GYN confirmed that I had an ovarian adnexal mass, which he was now calling a tumor, which was a little bit larger than yours, that must be removed for biopsy, as, he, too, could not rule out malignancy. I joke that 'I had an ovary on my tumor'. The following week I was in the hospital having my TAH/BSO with lymph node biopsy! (I also had other ovarian cysts and uterine fibroids, unbeknownst to me prior to the exams/ultrasound)

I wish I could tell you what to decide, but if I had more of a choice, I would have had ONLY those items with 'issues' removed, keeping all healthy parts. My DR suspected malignancy, thus my vertical incision and TAH/BSO.

Cutting a long story short, my tumor ended up being atypical but precancerous, and no further treatment was recommended, thank goodness! But what a scare - so I know how you must be feeling right now.

Talk to your DR at length to discuss your options. Your family medical history plays a part in the decision that will be best for you, too.

One question you may ask your DR is: How long after surgery will we know for sure whether there is/was malignancy? I say this because it took nearly 4 weeks to get my results! The pathologist at the hospital sent it off to Washington, DC for a second opinion! Yikes!

Please don't hesitate to email me if you would like to know more about my 'mass'.

I wish the best for you - I know you will come to the right decision for you.

Unread 12-29-2001, 02:39 PM
Newly Diagnosed- Advice Needed

Hi. This is my experience only, but just thought I would reply. When I had my ultrasound, it showed up multiple large fibroids. I had put up with years of heavy bleeding, pain, pain and more pain.

The decision was made to do TAH/LSO. They checked my right ovary and it was fine, so it was left in place. When they opened me they found a "mass" the size of an egg on one of the fibroids. Whilst I was having my op, they got the oncologist in to the operating theatre and took it and did a biopsy and the results came back as a degenerating fibroid.

I had no idea what it was. I went to GP the other day and mentioned it to him. He said that it is a fibroid that has lost its blood supply, thus it degenerates (dies). He said that I had surgery at the right time as it could have been quite serious if left alone.

I am just so thankful that I had surgery when I did. I had been ignoring all the heavy bleeding, pain etc for approx 4 years (just thought it was part of being female).

All I can say is please talk it through with your doctor and do whatever it takes and whatever you are comfortable with. I wasn't totally happy with the idea of having TAH, but now at 17 days post op I can honestly say it was the best decision for me.

Regards and hope all goes well for you
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Unread 12-29-2001, 09:46 PM
Newly Diagnosed- Advice Needed

Hello. I am new here too. I was diagnosed with a complex cyst/mass/tumor (whatever you want to call it, my dr. has called it all three) on my right ovary two weeks ago. I have had a lot of pain there for the last 1 1/2 yrs., but the dr. doesn't think that is what causes the pain. I am 32 with 2 small children. Eventhough we weren't planning any more children, I didn't expect to be going through this. The thing that was found on my ovary came as a total shock to me and it needs to come out. I just figured I was being a baby about the pain and that there was nothing really there.

I think I have come to terms with the surgery part, but the fact that it could be cancerous keeps shocking me over and over. I doubt that it is based on all the statistics I have looked at, but who knows? My dr. says we will see when we get it out. He sounded really positive that it was nothing to be concerned about.

I think this message board has been a life-saver for me. I see that all these ladies have been through something life-changing and are doing great. It gives me strength and a good attitude about the whole thing.

Good luck and keep us posted!
Unread 12-29-2001, 10:04 PM
Newly Diagnosed- Advice Needed

Hi Emmie!

This is not a decision anyone should have to make when pressured and/or frightened, but I'm in a pretty similar situation; the ultrasound and CAT scan revealed a "complex mass" that they think is probably a fibroid growing on a stalk outside the uterus, but they're not sure, and whatever it is, it needs to come out. It moves around in my abdomen, and there's some danger it could wrap around some other organ. I also have two fibroids in my uterus, making it pretty big. So like you, I've been dealing with having to make the hysterectomy decision under time pressure because of this THING that they have to get out of me real soon. I'm scheduled for Jan. 9, and here's how I'm dealing with the dilemma: the docs are going to try and remove the mystery mass laparoscopically. If they're unable to do that and have to open me up, they have permission to perform a partial hysterectomy while they're in there. A good compromise, I guess. I'm tempted to change course and just tell them to just open me up, take my uterus and the weird mass and be done with it.

This is a long post already, but if you want to know any more of my gory details, they're explained at even greater length in the posts titled Overwhelmed Newbie and Overwhelmed Newbie Update. I'm sure it'll all be OK eventually, whatever we decide.

Take care-

Suzanne in Brooklyn
Unread 12-30-2001, 05:21 AM
Newly diagnosed-Advice needed

In 7/01 I too was diagnosed with degenerative fibroids after intense pain sent me to the ER. This degenerative fibroid has grown and I have more fibroids which they call "progressive fibroids" + ovarian cyst + a rapidly enlarging uterus. I was given 2 options....hyst or myomectomy. I opted for the hyst as I can't see going through it twice. I'm scheduled for 1/7/02.

Good luck and I'll be praying for you!

Unread 12-30-2001, 12:37 PM
Newly Diagnosed- Advice Needed

Hi Emmie,

Seven years ago I was given the option of a myomectomy or hysterectomy for a very large fibroid that was causing lots of problems. I opted for a myomectomy because I couldn't see removing the uterus if it was healthy. Well that turned out to be the wrong decision. Two years later I was informed that the fibroid was back (either grew back or a new one started growing). The symptoms of heavy bleeding, anemia, bladder pressure, long periods are all back again and on Jan 18, I am having the hysterectomy I should have had 7 years ago. I wish my doctor had told me that fibroids can grow back. So when considering a myomectomy, please keep in mind that it might only prolong the inevitable.
Unread 12-30-2001, 12:50 PM
Newly Diagnosed- Advice Needed

I understand your fear. I just got a diagnosis too, although I did have symptoms. Though I don't have any tried and true advise, I can say that I am with ya in spirit!

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