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Doctors have my completely confused and in the dark. Please help

snowangel05's picture
snowangel05
Posts: 6
Joined: Feb 2014

.I have had a light dull lower back ache for about 4 months now that increased in pain a bit toward the end of december.  On new years eve That pain suddenly radiated around my whole lower back, side and lower abdomin.  I wound up in the ER, treated for what they said they didnt think was but had no other explaination for a UTI, The next night back to the Er the pain so bad I could not stand and a CT Scan was done.  I small 3 cm ovarian cyst and a fybriod were found, so they added ibubrophen to the Vicodin and sent me home.  The next day I saw my Internal Med. Doc, she changed me to Occy Codone and ordered blood test with a referal tomy gynocologist.  5 days later i saw the gynoclogyst and she said it's nothing OB in her opinion that neither could cause that much pain and sent me back to my Doctor.  My doctor had done a CA125 and the gynocologist did not know this at the time the number is 190.  So the gynocalled my back saying i needed a D & C with Biopsies immediately, surgery was done 1/15/14.  9 days later she tells me the biopsies are negative, but she wants me to see my doc again and feels my doc should refer my to specialist.  They refer my to an gynocoligical oncologist who looked at my tests, CT and then has a surgical nurse call to set up a complete hysterectomy.  Every question I tried to ask the nurse told me the doctor would answer at the surgical consult.  this isnt until 3/4/14. No-one will tell me why they feel i need a complete hystorectomy.  Can anyone help from your knowledge and experience.  I live in alaska and my surgery will be done in Wahington which is why i dont see the surgen until the actual surgical consult.  The pain comes for days at a time then goes,so I am on and off heavy narcotics and fearful of that also.  Thank you for reading and any help

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I would not consent to any surgery till you talk to someone.  I went into have my hysterectomy and my ca 125 was 200.  I had stage 3c ovarian cancer.  I don't think she should have a nurse call you to schedule this and expect you to say ok.  That is insane. That in my thought is not a good doctor

Susan P's picture
Susan P
Posts: 77
Joined: Sep 2013

Hi  My GP had trouble diagnosing an ultrasound showed something/inflamation in my lower left side-- turns oujt it was myvery large cancerous overy that had fallehnj onto my left  side.  after seeiingthis, he must have suspected as much - but didn't say anything to us but made an appt for me to have a contrast CT scan & see a good gynecologist.

 

The results were back by my gyne visit I was suffering from acites- build up of fluid in abdomden & was swollen like a basketball.

 

she was awesome  - said she was sorry to tell us I have ovarian cancer besides  the picture of the ovary & ascites thr scan zhowed thickeing o fthe omentum- full of cancer cells  THEN SHE WAS AWESOME

-she totally took charge & rold me she would have me in hosp in 2 days to remove fluid - they took 8 liters ( qts) & sent some to pathology& confirmed cancer cells

- she said she wouldhave me at the cancer center in a week - both of which she  did & I was started on chemo immediately.  I had had a hysterectomy years ago due to a uterine pprolapse -which was to my advantage my ca 125 was 4,000 then - 16 today after almost a year of treatment & debulking surgery to remove the omentum, ovaries & any physical signs of cancer.

 

 

I tellyou this to show - OVCA is not easy to diagnose  it is better to know so you can deal with it head on I agree - sounds like your docs may be a poblem

 

ask directly if they suspect OV CA if yes say - you'd like to move forward with treatment

 

good luck & keep us informed -- learn all you can about OVCA so you can ask questions & understand what is going on.

 

 

Susan P from Alberta Canada

 

Kaleena's picture
Kaleena
Posts: 1257
Joined: Nov 2009

I had pain - lower back radiating down my left leg.   It got so severe that I would nearly double over.   Had a colonoscopy - negative.   They did an internal altrasound - just saw a tilted uterus. I was told that I had severe endometriosis.   I had a laparoscopy done and said I needed to have a complete hysterectomy because of the scarring from the endometriosis.   I asked for a scan but said they didn't need to have one.   They weren't concerned that it was cancer.    They put me on Lupron for six months to help reduce the inflamation to make the surgery easier fo rthe doctor.   Prior to that, they did give me some narcotics for the pain.    I had a total hysterectomy.  After the hysterectomy I was told upon my follow-up appointment that they found cancer and I had to go back for staging.  I was staged at Grade 2 Stage iiia Endometrial Adenocarcinoma.   It was found in my uterus and left ovary.     

I went to many doctors during that year and a half prior to my diagnosis and ultimate surgery in 2005 with regard to the pain.    Then in 2009 (almost 4 years later), I started to have simlar pain.   All of my scans were negative but I still didn't feel right.  I had the area where the pain was biopsied and it came back positive so I had another surgery and when they removed the mass it was negative (but the pain was gone.   My CA125 was always in the normal range since I was diagnosed.

It was great to be off all of the pain medicines.  The hysterectomy helped.  But that is a decision that you will have to make.   I was in so much pain I was disappointed that I had to wait six months before my surgery.

I don't know why they wont tell you why you need a total hysterctomy.  I don't know your age.   However, it maybe because you have endometriosis?    Endometriosis is painful.   That is the original reason why I was got a hysterectomy.  Not for cancer.       But before any type of surgery, the doctors should explain the reasoning behind it.   You may have to press beyond the nurse to speak to the doctor prior to your surgery consult.   I ended up getting a new doctor for some of those similar reasons.

My best to you i finding your answers and getting rid of your pain.   I am surprised that you didn't have a physical exam first with the gyne/oncologist to discuss your tests and plans of surgery before setting up a hysterectomy.   Is it my understanding that at the surgerical consult that is when your hysterectomy is too?   I think I am with you by wanted more answers.

snowangel05's picture
snowangel05
Posts: 6
Joined: Feb 2014

As you can see I was able to see my doctor yesterday and got more information if you would care to read it and write about what you may be thinking or advise you may have now

snowangel05's picture
snowangel05
Posts: 6
Joined: Feb 2014

I saw my GP late yesterday and was finally given some information and the reason the Gyn/Onclogist wants to do a complete hystorecetomy.  My GP and regualar Gyn had decided along with the surgen that it was best to give me as little information as possible until close to the surgery time for the sole purpose of reducing my stress.

To clear something up:  I am in Alaska, in a small town and to see an gyn/oncologist i have to travel to either Anchorage, Alaska where there is one and no specialized supportive staff ( a 3 hour flight) or Seattle, Washington (a 2.5 hour flight) and a large highly ranked staff and surgon, so that is where i will be treated.  I count myself lucky that my surgery is only 3 weeks away after reading what many of you went thru.  I am now taking heavy nacotics which have the pain tolerable most of the time if i do not move around much.

So appaerently my surgen did call my GP and told her to explain more, after my 3rd tearfilled message to her, so today I was told the folowwing: 

I have a what looks like, but they are not 100% sure dure to abdominal swelling a simple cyst on my left ovary.  My right ovary they cannot tell me anything about because they could not see it on either the CT Scan or Vaginal Ultrasound.  In my Posterior Uterus is a Ill-defined Complex Partially Cystic Mass with Debris size is 4.58x4.9x4.4 cmwith my uterus measuring 6.6x6.1x5.1.

What has the doctors unsure is the D&C that they did showed no cancerous cells, yet I have this large uterine mass with the CA125 at 195.

This is why the gyn/oncologist feels that in light of the L overy cyst & it's size, Plus the inability to see My R ovary at all, the CA125 and severve lower back pain combined with the uterine mass a complete hysterectomy is best. 

I am 47 years old and have no children of my  own, my husband is 15 years older than me and i have 2 step children and 4 grandchildren from them.

 

Also, after much digging here on cancer.org I did find that going straight to a hyserectomy is sometimes used in cases with complicated and conflicting information and the back pain if what has my doctors the most concerned that if there is uterine cancer there that could be a strong indication it has already spread beyond the mass.

 

Thank you allfor you replies and also if any of you have simiar expereinces please reply as I am still a bit confued and worried, so any help would be welcomed because the conversation with my doctor did end again with we "just don't have an answer".

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I am so glad you dfinally got some answers.  It sounds like you are in good hands.  It is nice that they didn't want to stress you but this is your health.  They need to up front with you  so you know everything...  We are here to help.  Write down your questions and just ask or rattle them off as they come to mind.  

Glad you found us.…

Alexandra's picture
Alexandra
Posts: 1289
Joined: Jul 2012

Easier said than done, try not to worry too much and not to assume the worst. There is a good chance that hysterectomy will resolve your pain issues and pathology will come back benign. You are always welcome on this board with whatever questions you might have and simply to share. There is a good informative website www.hystersisters.com you might want to check out.

Best wishes and warm hugs,

Alexandra

lovesanimals's picture
lovesanimals
Posts: 1299
Joined: Sep 2011

I am glad that you will be in excellent and expert hands for your surgery.  Waiting the three weeks no doubt feels like torture to you but I hope you'll be able to focus on other things (or at least try to!).   Praying for good outcomes and that your surgeon discovers that your issues are non-cancer related.  Please keep us posted.

Hugs,

Kelly

 

mopar
Posts: 1954
Joined: Apr 2003

I can understand 'being conservative' with information, since no one can really confirm cancer until surgery and pathology.  However, it's so important to have good communication with our health care professionals, so that we can be confident and comfortable with them.  

I had what was thought to be a uterine fibroid, nothing more than that.  My gynecoologist took a CA125 test (at that time I had never heard of that) and because it was slightly elevated, sent me to a gynecologic/oncologist.  To this day I am forever greatful to him for having the insight to refer me to someone in this field.  The gyn/onc was reassuring, but stated that there was no way to tell if this was cancer related or not until surgery.  Sure enough, there was a mass on the ovary, which was immediately tested and cancer was confirmed.  Complete hysterectomy, omentum, etc.  

Let me supplement all of this by saying that an elevated CA125 DOES NOT always indicate cancer.  My history of endometriosis also can cause an elevation, as can infection, stress, and so much more, not the least of which is anything gynecological, such as cysts.  So, don't despair.  By your most recent post it sounds as though you have a better medical group now.  Please check back in with us and let us know how you are doing.

Till then, sending lots of prayers and (((HUGS))).  

Monika

 

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

Three weeks sounds like forever to you, especially when you're in pain. We'll be here for you. We understand the anxieties that come along with waiting and not knowing. ((((HUGS))))   Maria

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