Any help is appreciated!

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RE: Any help is appreciated!

by trehouse60 on Tue Aug 26, 2008 12:00 AM

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Dear concerned,

DO NOT let your drs be blase about your problems because of your age.  Illness is not age dependent.  Cancer is not a respector of birth dates.  They both are  predators of weak places in the immune system, which it sounds like you definitely have somewhere. 

I would recommend that you get a copy of all your reports and ask for referral for a 2nd opinion,  even with the tubal scheduled in 2 weeks.  The fact that you do not feel well and are having all these symptoms means there is something wrong - unless there is a very obvious visible problem when they look at your ovaries, there could be a problem there and it still be missed.

Also, if it were me, I might consider postponing the tubal til after getting a 2nd opinion.  If these symptoms are the result of a subclinical pelvic inflammation, or rheumatoid process, you might not be optimally healthy enough right now for a surgical procedure, even one as innocuous as a tubal ligation.

I say this not to scare you, but because it sounds like your docs are kind of brushing you off, and that's not good when you've got these complaints and they haven't made an attempt to get more complete answers before operating.  Getting a better confirmed diagnosis first may be healthier for you in the long run.

What these other ladies have said about having vague experiences of just not feeling good is pretty important.  I too, just didn't feel good for a matter of months before we found the nodules in my lungs that turned out to be metastatic breast cancer.  My breast exams were fine, my mammograms looked great - as they should have, because the cancer didn't come back in my breasts, but went to the lungs instead. The nodules were tiny - which means they hadn't been there long - perhaps just about the length of time that I just wasn't feeling good and had a suspicion that something was really very wrong.  After we found the nodules the oncologist checked cancer markers and ordered scans - everything came back negative or inconclusive.  He wanted to wait and scan again in 4 months - I said no way, I want a 2nd opinion. This led to surgical biopsy and confirmation that despite tests and scans that said probably not cancer, it WAS cancer. Had I not persisted and been  my own most vocal advocate, the cancer would have had 4 more months to grow....

Doesn't mean you necessarily have cancer (and I like the other responders sincerely with all my heart hope you don't.)  There's other reasons you could be not feeling well,  but it does mean the docs should be disregarding your symptoms for whatever reason.  Keep pushing, and If you aren't getting satisfaction from them, get a 2nd opinion - you are entitled to it.

Sincerely, Tre

RE: Any help is appreciated!

by concernedinpa on Thu Aug 28, 2008 12:00 AM

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Thank you all for your responses...I truly appreciate it.  Just one more symptom to report, I am also having pain in the back of my shoulders.  Is that something to be concerned with also?

RE: Any help is appreciated!

by dee052 on Wed Sep 03, 2008 12:00 AM

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On 8/25/2008 concernedinpa wrote:

Did have CA done...I think it was 18.  Doctors have been so blase about it b/c of my age.  So I will take your advice.  My prayers are with you and your family wishing your wife a full recovery.  Thanks!

Dee052...I forgot the CA125 ...mine was 12 and I still had ov cancer...now it is Ca125 is 126 and I am due PET Scan few weeks.....Please make your doctors test you with some scans.  CT scan or PET Scan....I don't have a family history of cancer.  My symptoms did not make sense to my doctor either, but I knew something was not normal for me....Take Care

RE: Any help is appreciated!

by dee052 on Wed Sep 03, 2008 12:00 AM

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On 8/25/2008 concernedinpa wrote:

I have been pushing, but I am starting to feel like they think I am some sort of freak calling them all the time.  I guess at this point, I will wait and see what the ovary looks like when I get my tubal ligation in two weeks.  I am done having children.  I have two beautiful and healthy children.  Thanks for you advice!

If you are done having children...I would think about  a hysterectomy....to totally avoid any cancer.  My sister was 35 when she had hers and feels great.  Something to think about...your symptoms sound  similar, so be very careful......even if you have a tubal...which I did...I still ended up with hysterectomy......So talk with your friends and loved ones...dont let the doctors decide for you.   Take Care Dee052

 

If 

RE: Any help is appreciated!

by trehouse60 on Wed Sep 03, 2008 12:00 AM

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I don't want to say that the shoulder pain is related to the other problems, but I don't want to say that it's not - just not enough information there to make an educated guess.

I DO know that you need to mention ALL your symptoms to the dr.

You might start keeping a pain/symptom diary - note each day how you feel, pain location and severity (on a scale of 1 - 10, with 1 being least and 10 being absolutely excrutiating),  how you respond to activity and foods, and  any change in symptoms or anything new.

Take it with you when you go to the dr.  Also look through it once in a while - if you see major changes for the worst happening, you need to push harder to get taken care of.

And keep pushing til you get an answer.  This is your body and your life - you need to be your own best advocate.

Take care,

Tre

RE: Any help is appreciated!

by concernedinpa on Thu Sep 04, 2008 12:00 AM

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Hey all...thanks for all your comments and concerns.  Here is a update...went in this afternoon for iud removal, tubal ligation and possible right cysectomy for suspicious cyst.  Well, woke up two hours later with only my iud removed.  My gyno said she could not get the scope in through my belly button or in a incision above my hairline.  She said she tried for 45 minutes with no luck.  She said she thinks it is because of scar tissue from a laparscopic gallbladder removal back in january or from my omentum.  This scares me.  I thought laparscopy causes minimal scar tissue!  She didn't seem that concerned about it and said she would not try again for tubal. She suggested other birth control methods and another transvaginal ultrasound for cyst.  she didn't go into too much detail b/c i was in recovery room and said she would call me tommorrow.  I feel like i should call my surgeon who did the gallbladder and ask him if this could happen and push for a ct scan b/c this does not sound normal to me and I AM SCARED!!!  now, i'm sitting here literally feeling like my guts are ripped apart from all the pulling and prodding of this afternoon.  Any advice would be great!  Could this possibly be PPC?

RE: Any help is appreciated!

by trehouse60 on Thu Sep 04, 2008 12:00 AM

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On 9/4/2008 concernedinpa wrote:

Hey all...thanks for all your comments and concerns.  Here is a update...went in this afternoon for iud removal, tubal ligation and possible right cysectomy for suspicious cyst.  Well, woke up two hours later with only my iud removed.  My gyno said she could not get the scope in through my belly button or in a incision above my hairline.  She said she tried for 45 minutes with no luck.  She said she thinks it is because of scar tissue from a laparscopic gallbladder removal back in january or from my omentum.  This scares me.  I thought laparscopy causes minimal scar tissue!  She didn't seem that concerned about it and said she would not try again for tubal. She suggested other birth control methods and another transvaginal ultrasound for cyst.  she didn't go into too much detail b/c i was in recovery room and said she would call me tommorrow.  I feel like i should call my surgeon who did the gallbladder and ask him if this could happen and push for a ct scan b/c this does not sound normal to me and I AM SCARED!!!  now, i'm sitting here literally feeling like my guts are ripped apart from all the pulling and prodding of this afternoon.  Any advice would be great!  Could this possibly be PPC?

Dear Concerned,

I know you are scared, but you have learned something very valuable today: you have adhesions (scar tissue that is sticking to other structures) in your upper abdomen, and possibly your omentum could be adhering to itself and or other structures in your lower abdomen.   That in and of itself could be causing pain and some of the other symptoms you have been having for quite some time.

So please, step back away from your fear for just a few moments, take some very slow deep breaths, and regroup.  Certainly what happened today is not what you wanted to happen, but in the long run this may be a good thing, because it may lead to a more complete diagnosis.

Yes, you're gonna be sore for a few days.  Take some pain medication, try to drink plenty of water and eat green leagy veggies and fiber foods to get started healing and to not have problems with constipation after all the manipulation, etc, etc.

Don't freak and call the dr who took your gallbladder out. No, laparoscopy does not usually cause a lot of scarring, but yes, it most certainly can. Success of healing can vary greatly from person to person.  Certainly you need more information about this scarring, but first you need a chance to heal from the trauma your belly sustained today.  Diagnostics from CT scan or whatever else might be ordered will probably show better results after your body has a chance to get rid of inflammation and swelling that might have happened when the doc was trying to scope you today. So the most important thing you need to do right now is concentrate on rest and healing, if only for a day or twol

When you see the dr, ask her to repeat what she told you today.  We don't always completely hear or understand or remember everything we are told when we have just come out of anesthesia. Verification when we have a clear mind is crucial to making further decisions. Remind her of the previous problems you've had - the cysts, the pain that seems to move from side to side, the BM's ranging from frequency to constipation, the exhaustion and night sweats - all of it.  Ask her if the scarring in your upper abdomen and your omentum could be indicative of a more invasive disease process. Yes, this could be cancer, but there are other conditions that cause some pretty severe symptoms and can cause cysts and scarring: pelvic inflammatory disease is one of them, endometriosis is another.

You might ask her if the scarring could have interfered with the results of the first transvaginal ultrasound; of so, does she really expect to get any better viewing from another one.  (Dense scar tissue does not lend itself to good ultrasonic evaluation.) Tell her you want further evaluation of this scarring - it didn't just happen for no reason. Ask her if CT scan or MRI is indicated. PETscan would be great to determine if this is cancer, but I doubt she will order it without first having done the less costly tests.  Be prepared - if the scarring is really bad, that may be all that really shows up - in that case you may need to have the scarring removed to find out what lies underneath.

The important thing is to just take it one day at a time.  Listen carefully to what the dr says.  Don't hesitate to ask for clarification, or ask further questions if what the doc says isn't making sense or doesn't seem adequate.  She probably will have done some thinking since she last spoke with you, and she may have different answers, or a more complete plan.

If you still don't feel you are getting the care you need, ask for a 2nd opinion.  get your records - copies of scans, blood tests, the operatory report form today, notes from past dr's visits - and take them with you when you go see another doctor.

I wish you speedy healing and some better answers soon.

Sincerely,

Tre

RE: Any help is appreciated!

by concernedinpa on Fri Sep 05, 2008 12:00 AM

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Tre, you are an angel!  It is 2:30 am and I thought i would check this before i finally tried to go to sleep.  I can't stop my mind from racing.  You were extremely helpful and have totally put me to rest a little bit.  I will ask the doctor EVERYTHING you said in this message.  I wouldn't have thought of half of those things b/c i wouldn't have been thinking too clearly.  Thank you, thank you, thank you!  I will post again with what she says tommorrow. 

 

 

RE: Any help is appreciated!

by Harrietg on Fri Sep 05, 2008 12:00 AM

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hi! if u go for a 2nd opinion, u might want to try a gyn/onc, in case u do need an operation
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