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My wife needs your help

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Ladies,

I am an almost 70 year old  11 year survivor of Stage 1 Kidney Cancer and regularly help the Kidney Cancer newbies on the Kidney Cancer discussion Board. Ovarian Cancer however is above my paygrade so I am turning the keyboard over to my wife so she can ask the questions.

Hi All!  I am very confused as to what my next step should be.  Background:  I am 68.  I had my left ovary out at 27 because of a dermoid cyst.  At that time, they cut open my right ovary just to check for any smaller dermoid there.  None.  However, I never had a normal ovary after that  -- although functioning-- it sunk back onto my intestines and scar tissue formed.  None of this was a problem through the years. PART II:   I was having some abdominal discomfort all last summer and when I went to my gyn for annual I mentioned it to you  (I'm convinced I pulled some muscles cleaning).  She (thankfully--probably saved my life) ordered an abdominal and pelvic ultra sound.  The pelvic ultra sound showed a 2 cm. cyst and a CA125 of 127.  Following up, I had another ultra sound a month later.   Same size--2 cm., no growth---CA125 went to 125.  I was supposed to have another follow-up 2 months later....but waited 6 months, which was last week.  My results:  2cc or maybe a bit smaller but with blood flow!  CA 125 again. Gyn called yesterday morning and said "have it out."  She gave me the name of 2 oncology gyns.  One is very into robotoics, in fact, I think that might be all the does and the other is head of the dept. of the hosp., very highy respected but no laproscopy or robotics.  My questions:  is there a difference in the type of operation they would do, can you find cancer better with one or the other types of surgery, does my "odd" ovary deter the robotics, and most of all what would all of you recommend???  Of course, I am scared.

 

Susie (Iceman's wife)

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

I am not a medical professional, so I can only offer my opinion.

At this point you don't have cancer; you have an ovarian cyst and elevated but stable CA125 marker (normal is 0-35). CA125 is not a good marker for everyone, so by itself it does not mean that you have cancer. Abdominal and pelvic ultrasound is not the best way to diagnose ovarian cancer, in my case it found 2mm ovarian cyst, I was told to repeat it in 3 months but in 6 weeks it grew into a 9cm tumor and metastasized everywhere. Trans-vaginal ultrasound is a little better; CT scan is what you want done prior to surgery.

I am not sure what the doctor meant by "have it all out": the right ovary only or hysterectomy too. My understanding is that they will remove the ovary, test pathology and determine if it is benign or malignant. If it is malignant (and I am not saying that it is), they usually remove ovaries, fallopian tubes, appendix, uterus (with or without cervix), omentum and sometimes lymph nodes and part of bowels if tumor is attached to it.

You heal faster after laproscopic surgery than after laparotomy. However it sounds like you have adhesions (scar tissue) from your previous unilateral oophorectomy and the surgeon would be able to see better with open surgery. I have not had robotic surgery, so I'm not sure about its benefits.

Try not to assume the worst, Susie. Just take it one day at a time.

Iceman - Congratulations on 11 years NED!

Best wishes,

Alexandra

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

All 3 were trans-vaginal

lovesanimals's picture
lovesanimals
Posts: 1209
Joined: Sep 2011

I don't really have an answer for you but wanted you to know that I'm sending you good thoughts and prayers as you go through all of this.  Be sure to ask the medical professionals all of your good questions and if you are not comfortable or satisfied with one medical person's answers, get a second and/or third opinion.

Iceman, I too congratulate you on your 11 (and counting) years.  You sound like a really caring and supportive husband.

Please come back and let us know how you are doing.

Kelly

wholfmeister's picture
wholfmeister
Posts: 248
Joined: Dec 2012

I wholeheartedly agree with Alexandra.  Don't let your mind go to those dark thoughts before you have all the facts.  You are on the right tract with a gynecology oncologist...research suggest these docs have the best outcomes.  A CT scan is called for and I bet that either of these docs will order one after your first visit.

Which one to call?  For practical reasons, check with your insurance company to be sure who is covered and who is "in network."  What hospitals do they use, and which cancer center?  Again, for practicality, it needs to be reasonably convenient, if it is something serious, because you'll be making many trips, whatever the problem is.  And whichever you choose, contact the other and see if you can get a second opinion, either in person or by asking them to review your records and results.

For me, my surgery was wide open, look-everywhere, remove-everything affair.  I haven't heard of cancer debulking done robotically or laparoscopic, but I don't know everything.  I had an initial ct scan, and then a ct-guided biopsy that confirmed my cancer before surgery.

i am praying for you, and sending you my best thought!

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I agree of course that you should not assume the worst. As for testing, I had multiple CT's that were clear or showed "diverticulitis", swallowed the camera pill and when it got stuck the Dr thought the battery in it died! You name it, it happended, and I could write a book! But it sounds like you are on the right track now. 

I now go to Cleveland Clinic and I had robotic debulking surgery. And right back into chemo. Short fairly painless recovery time. I asked the Dr if he could see as well as if he did it open and he said he could see better but no one can see the little hiding cells.

I dont think you can pick the wrong thing.

I wish you much luck and please keep us updated!

mopar
Posts: 1948
Joined: May 2003

Sorry you are going through this.  But I will echo some of the advice you've already been given.

Definitely go with a gyn/onc.  They know more of what to look for and what course of action to take.  What area are you in?  Just curious, as my doc is well-known across the US and he's superb.

As to the method, I can be 99% positive my doctor would not choose the laparoscopy.  Even the bikini incision that he used for my first surgery was minimal, but gave him enough opportunity to have a good look around.  That's important - being able to see other organs, other tissue, etc.  As to what to remove?  At this point I think most will say 'everything'.  Given your history, and current symptoms (although not 100% indicative of cancer), I'd say remove all.  In addition, they will probably take some lymph nodes and test those to be sure.  

And the CA125 can rise for any number of reasons, so this also does not give true indication of the absence or presence of cancer.  They really need to be thorough.

Please let us know what you and your doctor decide.  We would love for you to come back and give us an update.  More importantly, we're here for you - lots of shoulders here to lean on, and a wealth of information and support!

 

(((HUGS))) & PRAYERS,

Monika

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

I live in the Detroit area--a suburb.   Am using Beaumont docs.  I have an appt. with the head of gyn oncology on Fri.  He's the one who
"does it by hand."  Thank you for your well wishes.  I will update this board when I know more.  Susie

mopar
Posts: 1948
Joined: May 2003

Beaumont doctors are wonderful.  However, if you still want a second opinion, I would have a recommendation for you - my gynecologic/oncologist out of Providence Southfield.  As I mentioned earlier, I am forever grateful to have gotten him.  My gynecologist was the one that referred me.  I owe him my life!

Let me know, and I can email the info to you.

Monika

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

I live in the Detroit area--a suburb.   Am using Beaumont docs.  I have an appt. with the head of gyn oncology on Fri.  He's the one who
"does it by hand."  Thank you for your well wishes.  I will update this board when I know more.  Susie

Rosamond M
Posts: 87
Joined: Apr 2013

You are a very special couple - it is obvious that you both give each other great moral support The experiences shared and advice offered on this board should help to clarify your situation. Being able to connect with other women is a comfort, not only do you feel less isolated but you realise that your thoughts and feelings are very normal. My surgery was done by a Gyne oncologist , it was a laparotomy so I really could not advise on the alternatives. Your own inner signals will help you to make the right choice for you.

              Warm wishes and heartfelt hugs  to you both.

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

 

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

My heart sank when I saw your name iceman too ,six months after being diagnosed with Fallopian tube cancer my ct/pet scan showed unrelated kidney cancer.Your husband was very helpful to me on the kidney board. I'm sorry I don't know the answer to your question but I do know the better the gyn/onc the better the chances for survival are. Good Luck

Colleen

wholfmeister's picture
wholfmeister
Posts: 248
Joined: Dec 2012

You are in my thoughts today.

I hope, amidst the fear and anxiety, you get a sense of excitement and determination as you figure out the "plan" to fight and defeat whatever it is that is causing you problems.  Today is battle day!

Here's a hug...for you both!

wholfmeister's picture
wholfmeister
Posts: 248
Joined: Dec 2012

.

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

I can only echo the comments of others on this forum. What a coincidence I lived in a Detroit suburb myself for 30+ years. Beaumont is a great hospital and you will be in wonderful hands. I will be thinking of you and sending lots of positive thoughts and good wishes for you back to Detroit!

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Thank you everybody for your kind words.  My cyst is probably not cancer.  I will have an MRI which will determine more about the cyst.  I will probably have it taken out (to be on the safe side) laproscoply near the end of July.  Again, thank you!!  OH!  I forgot, the surgeon said my CA 125 is 25 and another time 27.  He doesn't know why the nurse who called me put 100 in front ot it!!!!

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

I would punch that nurse in the head and get her a pair of reading glasses.

Have a great week-end

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