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Carole’s Story

The story begins: Friday, the 13th of July, 2012. Thank you so much for stopping by and sharing your thoughts.

I started this page after a life-changing week which resulted in a diagnosis of primary peritoneal carcinomatosis. I’ve heard stories from people who have conquered other hopeless-sounding cancers, and I hope I’m as lucky. Treatment for peritoneal cancer is identical to the treatment for ovarian cancer and many issues are the same.

“Primary peritoneal carcinoma is very uncommon. Primary peritoneal carcinoma usually manifests with abdominal distention and diffuse nonspecific abdominal pain secondary to ascites [fluid in abdomen]. Survival is poor for patients with primary peritoneal carcinoma, with 100% mortality; the median survival reported is 12-25 months, even with extensive surgery and chemotherapy.”
--Medscape reference section, 8/10/2010

“Peritoneal carcinomatosis represents an advanced form of intra-abdominal and pelvic malignant tumors that has been generally associated with a grim prognosis. The peritoneal component of cancer is often the major source of morbidity and mortality. . . .” 
 --Principles of Perioperative Intraperitoneal Chemotherapy for Peritoneal Carcinomatosis, de Bree & Tsiftsis, in Recent Results in Cancer Research, Vol. 169, Springer-Verlag, 2007

“Malignant peritoneal disease in its various forms is a devastating condition for patients who suffer from it and it poses a significant challenge for the clinicians taking care of them. Research efforts in this field have traditionally been scarce under the assumption of a uniformly fatal and hopeless outcome. In the last few decades a renewed interest in peritoneal carcinomatosis and primary peritoneal malignancies has occurred.  Unprecedented favorable results reported with the employment of aggressive cytoreductive surgery combined with perioperative intraperitoneal chemotherapy have catalyzed a change in the conception and treatment alternatives for these diseases. Selected patients can now be offered a curative-intent combination therapy, whereas in the past only the best possible palliation could be considered.” 
--Advances in Peritoneal Surface Oncology, González-Moreno, Ed.

Through Thanksgiving 2013, I was grateful for several months of remission and a benchmark CA 125 blood test (measuring disease in both my peritoneal cancer and in closely related ovarian cancer) still in the normal range--but just barely. I was hoping it would stay there, but the CA 125 reading in December was above the normal range. By March 2014 it was much higher, signifying recurrence: 
  • "High values of CA-125 in a woman who has been treated for ovarian cancer may mean that the cancer has returned. Often the high CA-125 level is found many months before the return of cancer can be found in another way."--WebMD
  • "Among patients in complete clinical remission, a progressive low-level increase in serum CA-125 levels is strongly predictive of disease recurrence."--Journal of Clinical Oncology
As of April 2014, with the benchmark CA 125 number at 327, I was back on chemotherapy but still without clinical symptoms. My CA 125 number declined over several months on chemo but never got back to the normal range, although it was close. By fall of 2014, CA 125 was climbing again, vague clinical symptoms emerged, and a PET scan showed numerous new cancerous lesions. So with fingers and toes crossed, it's on to a new chemo drug in November 2014.

As you can see, Doug has not been entirely successful in his efforts to keep me away from internet search results.

Latest Journal Update

PERSONALITIES

Feeling very low…wishing I could find the spirit in others that enables them to tell their doctors what’s what. I have just come thru a harrowing week which I fear jeopardizes my treatment. I realize I’m being overdramatic, but I can’t help myself.

To try to summarize briefly: My original oncologist, a wonderful guy known for being very caring, has told me all along he’s been consulting with a gynecologic oncology surgeon in the same practice but in a different location. In fact this surgeon operated on me nearly two years ago, so I’m familiar with him. Recently my original oncologist said that since the gyn-onc surgeon is more of a specialist in ovarian cancer, he was suggesting I get treated for my 2nd recurrence (6 new tumors found in Oct.) from the gyn-onc guy instead. This was fine with me.

So I’m starting a new chemo drug which I’m supposed to get from the gyn-onc doc at his location. That’s where the trouble arose. Nobody told me there’s no lab at the gyn-onc doc’s location. This means I’m to make an 80-mi round trip to his office for blood draws the day BEFORE chemo, followed by another 80-mi round trip the day of chemo. I found this out by accident. It may not seem like a big deal—but to me, it is. The last time I drove to my original oncologist, I could hardly hold on to the steering wheel because my hands & wrists hurt so badly from rheumatoid arthritis. Plus, all my ailments & my advanced age mean I’m perpetually fatigued.  For me, a day of rest follows every trip into Tucson. 

I proposed, in an e-mail message via the patient web portal that purports to serve all the many locations of these doctors’ practice, that I get blood tests at whatever lab they recommend & then proceed immediately to the gyn-onc’s office for my chemo, allowing me to cut out the day-before-chemo trip into Tucson. What a firestorm that unleashed. Who knew? I thought it was a simple enough solution. But it turned out that half a dozen people, each apparently with a tiny piece of info, tried to address the situation. Some people thought I only wanted chemo from the 1st oncologist, some people thought I wanted to skip the blood tests, some people kept trying to re-confirm an appointment that had been cancelled 4 times, etc., etc., etc. Almost every day brought phone calls wherein we went over the same ground, with me trying to explain that I only want to avoid the 2 trips into Tucson if possible. Of COURSE  it’s possible—that’s what I’ve been doing for the last 2+ years—but it’s been nearly impossible to get everyone on the same page.

The whole thing culminated with an angry-sounding phone call from the gyn-onc on Wed. (It’s the 1st time he’s ever called me, while the original oncologist calls me regularly with test results, to see how a new med is affecting me, etc. He also called in the midst of this flap to say, “You don’t need this. You have enough stress in your life.” Amen!) After I had a chance to give the gyn-onc a more complete version of the facts, he calmed down. But he said I should not have used his practice’s patient portal to make my request. WHAT? What’s it there for? Why is “Send a message to your doctor” the 1st thing you see on the home page? Why are they encouraging sign-ups for the patient portal every time you visit?

The gyn-onc guy complained that he & others from his practice had wasted hours trying to accommodate my request. If they did, it was unnecessary, since the original oncologist’s P.A. & I had earlier resolved the entire matter . But who knew the 2 offices didn’t communicate with each other? Not me.  The gyn-onc’s diatribe made me dissolve in tears & I had to hang up, so I’ve written a short letter of apology which also outlines the WHOLE matter for him—if he bothers to read it.

I think I know the source of the problem. A nurse in the gyn-onc’s office is, I’m convinced, suffering from early Alzheimer’s. She was the original contact when the confusion began; & she can’t understand or remember much, or even anything, of what I say. I once knew a woman who acted just like this nurse does. Sure enough, it wasn’t long before this other woman was totally mentally incapacitated. I just hope someone figures out what’s wrong with this nurse before she starts pumping chemo drugs into my veins.

So now I go on Tues. for chemo & have to deal with some of these people. Those I’ll see on Tues. are entirely sympathetic & understanding of my viewpoint. But I’m hoping I won’t have to rehash the whole matter again. Time to move on. And time for me to hope all concerned still are willing to provide the best care. 

Here I go, in TMI mode again. Just had to vent. Doug sympathizes, but I can see he’s very weary of the whole thing. The good news-- have I buried the lead?--is that I think after just one dose in what was supposed to be a temporary arrangement, the new chemo drug appears to be working! I was told I'd have to wait 2-3 months to see any results, but the abdominal pains/twinges I had before the 1st dose are gone.

Enjoy your turkey!

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Comments

8 Comments

Judy Meyer
By Judy Meyer
What a mess! I know what you're saying, because I too have had problems with Patient Portal..No one told me and I just didn't know this, but I have separate ones for eye surgeons (2 of those) and my regular doctor and clinic. None of the problems I had are as extreme as yours, just irritating. I feel so bad for you, but I like the good news at the end! Any relief from irritations is a blessing. I wish you had more relief from the RA. Now I have a podiatrist also...x-rays showed I have cracks in the bones near my ankle...both the big bone, ulna, and the smaller leg bone next to that (I forgot what it's called). These + my high arches and high instep cause me foot pain every time I take a step. Don't we just love getting older! HaHa. Thinking of you always...:-)
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Hilary Towne
By Hilary Towne
Geeze, like you don't have enough to deal with. This is YOUR page. Vent away. XO
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JoEllen Cron
By
This is the proper place to "let it go". I am sorry that you are experiencing such frustration w/ what should be the least of your problems. I winced a little at your mention of "advanced age". :)
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Linda Jokela
By Linda Jokela and "The Boys"
Sorry you are experiencing insensitivity from some medical workers. Don't let them dampen your spirits, and keep giving that cancer the boot! Take gentle care of yourself, and enjoy some turkey next week, along with your favorite side dishes, as well as pie. Know that you and Doug are in my thoughts and prayers.
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Carol Haywood
By — last edited
Carole, you can do this!! You have a great relationship & supporter in Doug! I believe that the two of you together can accomplish anything!! My thoughts, prayers & best wishes to you both!!
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nancy ireland
By
The world is full of turkeys; unfortunately they're not the kind you can roast and eat. Venting soothes the soul. Sending positive thoughts, prayers and wishing you & Doug a Happy Thanksgiving!
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Valerie Kirk
By Valerie
Hey, sorry to hear all that! Would it be possible to stay overnight somewhere on the cheap closer to the lab/office where you need to get all that done? Not sure if that is a reasonable suggestion. Hope everything works out!
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Virginia Towne
By
Oh honey, stay strong. I am sending you hugs in my thoughts. I am sure Doug is tired too, these things drag everyone down. When you are in pain just getting out of bed can be a chalange, but to deal with people in a snit on top is just too much.

Thank you for your good news! I hope it continues to go well.
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