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Old 02-02-2013, 08:16 AM   #1
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1st and 2nd opinion now confused

Hello all,

I will list what is happening here below. It is a book, sorry. My doctor's of 13 years (who has still yet to examine me herself was done by NP) says have a LAVH/BSO hysterectomy, just in case. We cant say if the cysts are cancerous or not. Was sent to gyno-onco (who has yet to examine me himself was done by NP) says they can't guarentee it is not cancer. Consider the op. I have just had a 2nd opinion who says I don't need surgery but recommends a hysteroscopy to check the spotting between periods. Any insight would be helpful. Was already to do surgery now having second thoughts. Any thoughts? Panic has set in.

Female 49
D&C late teens
Cryo Mid 30's
PAP’s Normal
Mammos normal

Gynecologist recommending LAVH/BSO, McCall’s Culdoplasty

No family history of breast, ovarian or colon cancers in immediate family.

MG sarcoma CNS 65yrs, MGF heart attack 87yrs, PG unknown, PGM old age 98

Siblings: Oldest sister with ovaries remaining, has COPD, other is 63 complete hysterectomy, does have some memory problemsand takes premerin, fairly healthy otherwise. Mother: was total hsterectomy.

10/2012 Saw gyno for recurrent pains in LABD area. Felt as though my ovaries were humming. More pain in Right then Left.

Exam results:
Uterus L65mm W39mm Vol:41cc Position: Anteverted

Endometrium: Double Thickness; 6.0mm

Ovaries:
Left: L43mm W39mm H33mm Vol:29cc
Right: Appears normal. L19mm W21mm H22mm Vol5cc
Left impression: Simple cyst. 2 simple cysts
1# 2.8x3.0x1.4 cm
2# 2.9x3.0x2.0 cm

Cul de Sac:
Fluid: None seen.

Comments: Normal U/S with 2 simple cysts in LEFT ovary. Can recheck U/S in 6-8 weeks for resolution if stil Sx

11/2012

CT Scan ordered by Urologist for urinary frequency and persistent micro hematuria

Results: Kidneys, Ureter, Bladder fine

Pelvis: Uterus is normal in appearance. There is a 2cm cyst on the RIGHT ovary. There are peripheral calcifications in both ovaries. There is no free fluid. There is no adenopathy. There are phleboliths in the pelvis.

Radiologists Impression:
1. Normal CT urogram
2. 2. 2 cm cyst RIGHT ovary, likely functional. Peripheral calcifications in both ovaries, may be vascular. Recommend TVU/S.

1/2013

Follow Up: U/S

Sharp pain right side. Dark black blood spotting between periods. Only lasting 1 morning each past 2 months. Follow up to ovarian cysts. Has CT Scan.

Uterus: L46mm W35mm H33mm Vol28cc Position: Anteverted

Endometrium: Double Thickness; 7.0mm

Ovaries:
Left: L25mm W23mm H24mm Vol 7cc
Right: L43mm W50mm H41mm Vol46cc

Left Findings: Complex Cystic, solid component, 1.9x1.5x1.4cm
Right Findings: Complex Cystic, solid component, septated, 3.7x3.5x3.1cm
SOLID MASS measuring 1.8x1.7x1.6 cm

Cul de Sac:
Fluid: None seen.

Comparison of Ovarian Cysts? Consider LAVH/BSO due to abdominal bleeding (no cause seen on the U/S) and ovarian masses.

1/2013
CA-125 blood test normal 6
Vaginal ultrasound scan reveals 3 cysts on ovaries as described just above.
Consult with Gyno Oncologist recommends op as well.

Some sysmtoms that prompted me to visit the doctor in the first place included:
Hard belly
Burping
Bloated
Feeling full
Indigestion
Heartburn
Flatiulance/Wind
Waves of nausea
Dizziness
Urine dark at times
Like I can feel my ovaries
Loose stools
Bad constipation
Lower back pain
Cramping at pubic bone / starts a lot more at night and first am
Cramping when seated
Sparse periods
Fibrous blood clots and darker brown periods
Black spotting
Smelly
Yeast infections
Fatigue
Breast tenderness
Weight gain
Metal taste
More dizziness
Aches and pains in legs and hips
Indigestion
Frequent urination
Tingling in upper thighs
Period like cramping
Burning feeling at vagina
Burning of base of spine and buttocks and down front of legs to ankles and feet
Metal taste in mouth from time to time

 
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Old 02-03-2013, 03:23 PM   #2
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Re: 1st and 2nd opinion now confused

Sorry you're faced with possible surgery! Your symptoms and suggested treatment are VERY similar to what I experienced 7 years ago (at the same age no less). I had a suspicious ovarian cyst (cystadenoma) although it was quite a bit larger than yours (9cm). My gynecologist, whom I'd trusted for 20 years, overtreated me by removing all my organs even though the cyst ended up being benign (as determined by the frozen section done while I was in the operating room). He had also referred me to an oncologist. The oncologist said he couldn't tell if it was cancer from the transvaginal ultrasound and the CT scan report. After I got all my records, I discovered that the oncologist specifically recommended removal of just the one ovary but he didn't tell me that.

Based on what I've discovered since my hysterectomy, I would have done things VERY differently. I would have gone "far and wide" to find a doctor who acknowledges the lifelong functions of the uterus and ovaries and treats accordingly by preserving these organs. Of course, if CONFIRMED cancer necessitates the removal of an organ, that's another thing.

Usually, ovarian cysts can be removed via cystectomy which preserves ovarian tissue and its lifelong hormone production. But some doctors don't have the skills and/or it's more profitable (due to time and possibly insurance reimbursement rates) to remove the ovary.

Ovarian cysts can cause "abnormal" bleeding so it's not unusual that you've had some break through bleeding. It doesn't sound like there's any reason to remove your uterus either. Even ACOG says 76% of hysterectomies don't meet their criteria. You can find the study in PubMed.

Here are some things I would have done differently:

1) Not allowed fear (from gyn, co-workers, family members more so than myself) to rush me into surgery.

2) Did more research about the lifelong functions of the uterus and ovaries. Specifically, I wish I'd known or understood:
- Why women's figures change after hysterectomy (thick, shortened midsection, big belly, flat butt), weight gain or not. I hate these changes just as much as (probably more than) the loss of my hormones.
- How this breach to the pelvic structure (loss of pelvic integrity) leads to chronic back and hip pain.
- The anatomical changes can alter bladder and bowel function and lead to incontinence and future surgeries for prolapse. I've had bowel problems since surgery.
- The uterus and cervix are key to sexual function and that a lot of sensation can be lost when all those nerves and blood vessels are cut. My libido and response are nil. I used to have such great orgasms
- The ovaries of an intact woman produce hormones into her 80's. The loss of these hormones has been shown by medical studies to cause many increased health risks and loss of quality of life.
- HRT can't completely replace the loss of ovarian hormones. Our ovaries produce just the right hormones at just the right time ("on demand" if you will) to keep us healthy. Every single cell in the body needs ovarian hormones. This became obvious to me shortly post-op. Despite taking estrogen, my hair fell out at an alarming rate and the texture became very fine and a section turned gray. My skin collagen evaporated overnight causing hollows beneath my eyes, and a long, narrow face versus the rounded, youthful face I'd previously had. My chin and mouth area because very saggy and veinous. Veins formed on my forehead. My vision became blurry. Basically, I aged on the outside about 15 years.

3) Was aware of the gross overuse of hysterectomy and the high rate of removal of healthy ovaries.

4) Asked the oncologist more pointed questions and requested my records from that appointment BEFORE I had surgery.

5) Got more opinions and gotten them from doctors outside my gynecologist's hospital "network."

6) Since I was told I may have cancer, I wish I'd found an oncologist to do the surgery (in case it did end up being cancer). I was told that the oncologist would be "on call" in case it was cancer. I wish I hadn't accepted this. I suspect my doctor felt that my chances of it being cancerous were very slim even though he didn't tell me that. However, my research on cystadenomas (which my doctor said it appeared to be and was per surgical and path report) revealed that it the chances of cancer are quite low.

7) Last but not least - Modified the surgical consent form to not allow removal of any organs unless the frozen section showed CANCER. I would have had the surgeon initial my write-in's. And I would have made a copy for my records.

Sorry for the novel but I hope this helps you! I'll be happy to answer any questions you have.

 
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Old 02-03-2013, 09:42 PM   #3
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Re: 1st and 2nd opinion now confused

St Louisgal thank you so much! I appreciate all of your comments! I am terrified. Iam going to read each comment you have made closely and will post back to you again if that is ok?

 
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Old 02-04-2013, 05:46 AM   #4
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Re: 1st and 2nd opinion now confused

You're welcome. Thanks for the hug!
I realized last night that I failed to list a lot of the consequences I experienced after my surgery even though I was taking estrogen. These included severe depression, anxiety, insomnia (could only sleep for 2-3 hours at a time), nausea, shakiness, irritability, being overwhelmed by everything, loss of motivation to do anything, loss of focus, memory loss, loss of cognition (feared losing my job these mental effects were so bad), reclusiveness, mild hot flashes, blurred vision, very dry skin and hair (used to have somewhat oily skin and hair), rapid hair loss and skin aging (which I mentioned in my earlier post).

My body was crying out for more estrogen but my gynecologist refused to see me when I called his office in desperation. The next doctor I saw checked my blood level of estrogen and said it was "therapeutic" and sent me on my way. After over a year of pure hell, I finally found a doctor who realized I needed more estrogen to do the basic functions of day-to-day living. I can now function better but I miss the "old" me - happy, vibrant, outgoing, youthful looking, confident, sexual. I realize she's not coming back. My husband and children have also had to adjust to this new me because it's changed our relationship.

Last edited by STLouisgal; 02-05-2013 at 05:55 AM.

 
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Old 02-05-2013, 12:36 AM   #5
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Re: 1st and 2nd opinion now confused

I have just tried to get my notes from the visit with the nurse practitioner at the GONCOL. They told me they won't release them to me. I have yet to speak with the oncologist. Apparently she is good enough to look at me but her notes on my situation are not valid? Crazy!

I will be phoning the gyno today. I will keep you posted.

 
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Old 02-05-2013, 12:37 AM   #6
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Red face Re: 1st and 2nd opinion now confused

I have just tried to get my notes from the visit with the nurse practitioner at the GONCOL. They told me they won't release them to me. I have yet to speak with the oncologist. Apparently she is good enough to look at me but her notes on my situation are not valid? Crazy!

I will be phoning the gyno today. I will keep you posted.

 
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Old 02-05-2013, 05:37 AM   #7
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Re: 1st and 2nd opinion now confused

I don't understand why the oncologist NP won't provide you with the notes from your appointment. Those are your medical records so you have every right to them. At least I thought that was the case in every state. You can check with your state's medical board to see if there's some reason why they can't be released to you.

 
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Old 02-05-2013, 05:45 AM   #8
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Re: 1st and 2nd opinion now confused

Will be pushing today. Just off the phone with OB/GYN office and they said I have every right to those notes. Keep ya posted. Thanks for being there.

 
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Old 02-05-2013, 05:58 AM   #9
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Re: 1st and 2nd opinion now confused

Great! Just noticed - you're in the UK so don't know how things work over there.

 
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Old 02-05-2013, 06:08 AM   #10
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Re: 1st and 2nd opinion now confused

Yes, but I am American with a US OB/GYN. The distance is causing more stress. Have been advised by the doctor in the UK that don't need one but am concerned he is not invested enough in me as he does not know me as well as my US doc. I have private healthcare so I don't think he is motivated by money if he is saying I don't need one. But they tend to not be as proactive in nature as us Yanks!

 
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Old 02-06-2013, 07:07 AM   #11
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Re: 1st and 2nd opinion now confused

Quote:
Originally Posted by amc282 View Post
I have private healthcare so I don't think he is motivated by money if he is saying I don't need one.
The fact that he wouldn't financially gain from his opinion would be MORE reason to "put stock" in it versus someone who will profit from surgery.

Quote:
Originally Posted by amc282 View Post
have a LAVH/BSO hysterectomy, just in case. We cant say if the cysts are cancerous or not.
There are a couple of things I don't understand here based on all the research I've done about ovarian cysts as well as hysterectomies. Why is it all or nothing? And is "watchful waiting" an option? Since the cysts recently formed and are quite small, was there any discussion about monitoring them to see if they resolve?

There appears to be nothing wrong with your uterus. Irregular bleeding is common with ovarian cysts. However, a hysteroscopy as suggested by the UK ob/gyn would ensure it's nothing more than that.

IF the cysts don't resolve and need to be removed then a doctor with cystectomy skills should be able to remove JUST the cysts (cystectomy) and do a frozen section (pathology) on them while you're in the operating room. If the frozen section is benign, there would be no need to remove anything else. You'd be left with your vital organs to continue producing their health-giving hormones into your 80's or thereabouts. This is similar to removing cysts from the breasts. And, actually they don't always remove breast cysts but instead do a fine needle biopsy and leave them alone if they aren't cancerous.

If there's no cancer of the uterus, then you'd still have it to keep your bladder and bowel in their normal position reducing risk of prolapse and incontinence and keeping your pelvic structure intact for good posture and pelvic and back support. And it can be key in "physical" relationships too.

Hope this helps!

 
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Old 02-06-2013, 08:17 AM   #12
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Re: 1st and 2nd opinion now confused

Hey, thanks for the check-in. I have more info to share with you later about the conversation I had with the Gyno/Onco and my Gyno. Heated! More to come!

 
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Old 02-07-2013, 03:08 AM   #13
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Phoned gyno/onco in the states to get a copy of the notes from my initial visit with the NP who was truly wonderful and very capable herself. They said they will not release those notes to me? They are MY personal health records and in FL you have a right to your records. They cannot deny you.

If she is valued enough to fully exam and counsel me then why are her notes not of value to me?

That set me off on the poor women who answers the phone. I said I didn't understand how they could deny me those notes as the gyno/onco has not even seen me yet and I need those notes to help me decide how to proceed. What did they expect me to do? Fly 4500 miles the week before they want to perform major surgery on me for him to finally see me? Yes. I went ballistic and said I was quite angry with my OB/Gyn as well as she has yet to speak to or even examine me in person. She hasn't even seen me yet and has based her recommendations solely on the notes of her NP (who is very nice and I am sure very capable but is the one who is merely passing off second hand info to the a doctor who is only reading the NP notes!) You would think if she was recommending major surgery to a patient she would have the courtesy to do it face to face in plenty of time before the surgery is scheduled? The two appointments I had in 3 weeks she was getting an award on one day so couldn’t be available and the second time she was moving her daughter (who is n graduate school! Back to college!). I understand they have families, too, but seriously? Moving your adult child back to graduate school? Oy. An award? How about a ceremony in the evening or how about you say “if I am such a good doctor who deserves all these awards I will prioritize it by seeing my patients first?!

Well, the Gyno/Onco office phoned the OB/gyn office and all hell broke loose. I said are there no other options. I have been given no firm diagnosis and no alternative therapies? What about hysteroscopy/cystectomy, etc. I finally got a phone appointment to speak with OB/gyn on the phone who barely let me get a word in. Trying to achieve that call when there answering service kicks in automatically at 4:45 with a +5 hour time diff was an achievement in itself! She said “can I tell you my side of the story? I just assumed you were tired of dealing with the issues and wanted to be done with it.”

I only just started being aware of the damn cysts in October! I have had breakthrough 2x since them. I am in perimenopause! She said “do I think you have OVC, No.” I said “why such extreme measures, blah, blah, blah.”

Then she said I could cancel the surgery and we could monitor with another US when I came home in April!

I am continuing my association with the consultant here in the UK and now I am on his books I think he will monitor me here with US’s. My faith in my doc of 13 years is gone and I will be shopping around for a new gyno in the states.

Keep the info coming. You have been a great sounding board. This ain’t over yet!

 
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Old 02-07-2013, 06:29 AM   #14
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Re: 1st and 2nd opinion now confused

Quote:
Originally Posted by amc282 View Post
I said are there no other options. I have been given no firm diagnosis and no alternative therapies? What about hysteroscopy/cystectomy, etc. I finally got a phone appointment to speak with OB/gyn on the phone who barely let me get a word in. Trying to achieve that call when there answering service kicks in automatically at 4:45 with a +5 hour time diff was an achievement in itself! She said “can I tell you my side of the story? I just assumed you were tired of dealing with the issues and wanted to be done with it.”...I am continuing my association with the consultant here in the UK and now I am on his books I think he will monitor me here with US’s. My faith in my doc of 13 years is gone and I will be shopping around for a new gyno in the states.
I'm sorry that you were treated so horribly! But I'm glad that your assertiveness paid off. It's a shame that you had to "push them to the wall" to find out that all that's needed as of now is monitoring. I wonder what's in your records that they won't release them. I regret that in my situation I accepted my gyn's answers to my questions as truth when in fact they weren't. Having had a 20 year positive history with him made it difficult for me to see through his shenanigans.

 
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Old 02-07-2013, 06:49 AM   #15
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Re: 1st and 2nd opinion now confused

I am so sorry you had to go through that experience. I know how sad it must have been. Thank you for helping me be assertive! My husband was really good, too! He is quite level headed where as I swing straight to emotional.

I received the letter from the new consultant today and I will highlight some of his comments later. He was quite witty! xxx

 
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