Growth found outside the peritoneal cavity

Just plain scared~U R N the right place~We've all been there

Hello Cindy ~

Let me say my letter is more of a “get acquainted” kind of letter than one filled with magical solutions.  But you are talking to someone who knows about “anxious moments and times of uncertainty.”  So from what you’ve shared, I believe I can say “been-there-done-that” and still alive to tell about it!  Therefore, I think there’s help for you.

Your comment on your about-me page brought back memories of my own constant quest to get rid of “accumulated fat” that I somehow “mysteriously” acquired through the years.  However when I was diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, at age 73, oh how I wished that losing weight was my only problem.  I “counted my last calorie” the day I found I had cancer.  Now I’m happy to be able to eat, although I’m not able to eat enough to gain weight.  I’ve lost around 30# overall since the day I discovered I had a “real” problem.  So now “having an appetite” takes precedence over weight gain.  Taking an anti-nausea pill the first thing when I wake up and before I’ve had anything to eat helps me to be able to eat something during the day.  Now that’s not to say, I have an appetite, often I do not, but at least I’m not nauseous.  My doctor prescribed “KYTRIL” (Granisetron) and it works great.  Different people prefer to cope in different ways.  For me, I try to research my cancer, make myself aware of what MAY happen, and then find the best doctors I can that are available to me.  And I make no apologies for being a Christian, so I find that putting some favorite verses on how to cope in my “memory bank” helps. 

Having been first diagnosed here at home, in November of 2012, at age 73, I thought my days were soon to be over.  Then when I went to the University of Pittsburgh Medical Center to have Cytoreductive surgery (July 1, 2013) by Dr. David Bartlett, about 3 days out from the surgery, I once again wondered, “Is this it?  Are my days over?”

Having had my ovaries, fallopian tubes, spleen, gallbladder, omentum and sections of my intestines removed, this was a time of a “new low.”  Had I not already had my appendix removed at age 12, and my uterus removed at age 36, they would have been part of this surgery.  (I did not have HIPEC even though many patients do have this concurrently with their Cytoreductive Surgery.  That may be a possibility for you, but you didn’t mention it specifically.)  I remember calling in a nurse about 2:00 A.M. in the morning.  I said, “I brought along some favorite Bible verses that are in my Bible.  Would you mind getting them out and reading them to me?”  She not only read all of them to me, but she stayed about half an hour, and shared some times when God had shown Himself strong on her behalf.  The verses gave me reassurance that God had not brought me to PA to die.  And so, I read those verses each day—for 42 days because that was how long I was in the hospital.  My “massive incision from my sternum to my pubic area” broke open.  I had a massive infection which required a “wound vac”.  Actually it took 8 long months for the incision to close up from the “inside out.”  You can probably relate to the surgery in a similar way.  Long story short—I survived!

In 2014 three cancerous nodes appeared on the Caudate Lobe of my liver which were successfully eradicated with targeted radiation.

And here I am almost 6 years later, and still having enough quality of life in between treatments to make them—so far—worth the side effects of the surgery and the now 5 different series of Carboplatin and Paclitaxel (Taxol) later. 

I just began my last series, but actually have only had one so far.  Yesterday was to have been my 2^nd in the latest 6-regimen series, but FLORENCE blew into town and the majority of doctor’s offices closed, including that of my oncologist.  But he has told me that “missing one” won’t hurt.  So I will be rescheduled for next week.  I say all that to say this, although most likely you will find yourself going through another series of chemotherapy, it may serve to “knock back” what we will assume is a “new cancer” that had not raised its ugly head previously.  Heretofore, it seems that after each one of my treatment regimens, there would be about 10 months of “progression free” time.  My oncologist doesn’t hesitate to order a PET/CT or a CT anytime I think I’m experiencing something new. 

So all I can tell you is—as difficult as it is to not do—don’t attend your own funeral today.  It’s a road you don’t want to travel, or you will lose all the quality time that you still have to enjoy today.  When I let my mind wander, my imagination can run wild, and that always robs me of the joy of still being alive today.  So the most I can say, is concentrate on the positive things you can do today, and dwell on the good things you still have going for you.  Lean on your friends and family, and if you choose, call on the Lord to give you peace of mind—that’s my advice.  Wallowing in the worry pit which I can do for a couple of days leads me to a dead end, not knowing what to do about all the “what-could-this-mean” possibilities I have conjured up in my mind. 

Since I choose to believe the scriptures, there are some verses that guide my thoughts.  But one in particular, “Thou will keep him in perfect peace whose MIND is stayed on Thee.” (Isa. 26:3)  So I find that when I take my troubles to the Lord instead of trying to “take care” of them all by myself, I am much more at peace.  Now it doesn’t meant that He is going to take away all my pain, give me instant answers, and ultimately heal me, because I don’t think I am any more deserving of total healing than the next poor patient, but He reminds me that I am not alone in this struggle, and He promises to never leave me or forsake me.  (Hebrews 13:5)  So yes—I find it’s possible to be scared out my wits—but possible to be confident that God is still with me.  “What time I am afraid, I will trust in Thee.”  (Ps. 56:3).

Now I’m not trying to make anyone else believe like I do, I’m just sharing what helps me to keep my feet on the ground each time new trials come.  (I have no reason to believe that even harder times will come along the way with my Stage IV diagnosis.  Yet, what I can still do today brings me and my family and friends joy even in the midst of my uncertainty.  Starting out at the top of the scale with a Stage IV diagnosis, is not ideal, but if I had my way, or if you had your way, neither of us would be on this site—would we?  Bottom line, try to not let your mind run wild—make yourself aware of what can be done—ask lots of questions—do the next thing.  If the “next thing” is more chemo, do it and don’t fill up all the calendar pages for the coming year today.  As difficult as it is—don’t run ahead of yourself and imagine this is it and there’s nothing left in life for me but woe and misery!”  That’s certainly a bad prescription.  Don’t get that one filled today.  And by now, I’m guessing weight loss is not your number one priority!  All I can say is that there are lots of ladies on this site, who have been scared out of their wits—but they’re still coping and you can too!  We’re here for you.

Love & prayers for you Cindy,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

(Almost to the 6-yr. survival mark & still happy to be alive!)

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 1.     https://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

 1a. https://www.cancer.net/cancer-types/ovarian-cancer/view-all

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2.     https://www.cancer.gov/types/ovarian

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 3.     https://medlineplus.gov/ovariancancer.html

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4.     http://www.practiceupdate.com/c/30185/2/0/?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter&rid=MTYyNDA5MzQwNDg1S0&lid=10332481

 Hyperthermic Intraperitoneal Chemotherapy Plus Cytoreductive Surgery Improves Ovarian Cancer Survival

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5.     https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076138/

Cancers originating from organs in the peritoneal cavity (e.g., ovarian, pancreatic, colorectal, gastric and liver) account for approximately 250,000 new cancer cases annually in the USA. Peritoneal metastases are common owing to locoregional spread and distant metastases of extraperitoneal cancers. A logical treatment is intraperitoneal therapy, as multiple studies have shown significant targeting advantage for this treatment, including significant survival benefits in stage III, surgically debulked ovarian cancer patients.

However, the clinical use of intraperitoneal therapy has been limited, in part, by toxicity, owing to the use of indwelling catheters or high drug exposure, by inadequate drug penetration into bulky tumors (>1 cm) and by the lack of products specifically designed and approved for intraperitoneal treatments.

This article provides an overview on the background of peritoneal metastasis, clinical research on intraperitoneal therapy, the pharmacokinetic basis of drug delivery in intraperitoneal therapy and our development of drug-loaded tumor-penetrating microparticles.

Keywords: intraperitoneal therapy, microparticle, peritoneal metastasis, solid tumor, tumor penetration, tumor priming

 The peritoneal cavity is a common site for metastases. In general, presence of peritoneal metastasis is a poor prognosis indicator. Peritoneal carcinomatosis or widespread peritoneal metastasis throughout the peritoneal cavity is present in end-stage disease.

For advanced ovarian cancer, aggressive surgical tumor debulking combined with intraperitoneal (IP)/intravenous chemotherapy has yielded some benefits. However, for peritoneal carcinomatosis from nongynecologic malignancies, including gastric, colorectal and pancreatic cancer, the median survival time is less than 6 months [1]…”

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6.     https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ovarian-cancer

[I find this link to be of great help.  It gives me a definition of the word I key in, and an audio symbol as well so I can pronounce the word.  This gives me more confidence when I talk with my nurse and doctor.]

7.  https://www.youtube.com/watch?v=WF9vmZ8eYOY

a story by a cancer survivor with OC Stage IIIC.  This was dated Nov. 2013 so I don't know her outcome today, but it is her story.

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Aloha Cindy said:

Just the help I needed"

Thank you Loretta for such kind words. I'm slowly getting out of my funk and dealing with life. Yesterday I had a chance to speak to the Chemo Dr. from Chicago. She said even though the CT scan is indicating recurrence only when the growth is biopsied will I know for sure. So....I see the oncologist on Wednesday for consult an then go from there.

Dearest Cindy –

This is sometimes when it is the most stressful.  WAITING is not easy.  So I hope you have something planned to do that you feel well enough to do between now and next Wednesday—something diversionary. 

I, for one, will be praying that your oncologist will help you to make the best decision about treatment going forward once you actually know what the biopsy shows.  It would seem that your CA-125 would read much higher than 17—one would think.

The saying, “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” is certainly true especially true for you today.

Love & prayers,

Loretta

P.S.  By the way, I’m only into “inches”—not centimeters—so I went to the conversion chart to get an idea of the size of your tumors,  I meant to put it in my first post and didn’t.

 So here are the two figures:   This was the size of your tumor when you were first diagnosed last year!  27 cm = 10.6299 inches  

 Now the growth you tell us about that has just been detected in the mesentery is 7.6 cm. that equals 2.99212598 inches. 

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1.      https://www.medicinenet.com/script/main/art.asp?articlekey=4356

Medical Definition of Mesentery - Mesentery: In general, a fold of tissue that attaches organs to the body wall. The word mesentery usually refers to the small bowel mesentery, which anchors the small intestines to the back of the abdominal wall. Blood vessels, nerves, and lymphatics branch through the mesentery to supply the intestine. Other mesenteries exist to support the sigmoid colon, appendix, transverse colon, and portions of the ascending and descending colon.

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Cindy~Florence changed her mind & we avoided the big storm

 Hello again Cindy ~

            Thanks for inquiring as to how we’re doing here in Tidewater VA.  “Fickle Florence” decided to not visit us after all.  This is one time we were happy she changed her mind.  We were braced for torrential rainfall and wind beginning on Thursday.  (My second chemo treatment was cancelled because of the expected storm.) 

Originally we were thought to be on the outer edge of the storm, but actually Florence (just like we women reserve the right to change our minds) decided to head south.   

But, we took it seriously and braced for water damage.  Thankfully, all we had was sporadic rainfall and clouds.  So the tourist who came to vacation this week in Virginia Beach didn’t get too much “sun”, but they did have “plenty of surf”.  Our whole city is grateful because there are lots of low lying areas here this close to the Atlantic Ocean. 

Oceana jet planes took off for safer places, and our ships sailed out to sea to ride out the storm.  So I brag just a bit about our naval town in a reference below. 

            Hurricane Matthew visited us a couple of years ago.  We had water come into our garage and did a lot of damage from days of heavy rainfall.  You know though that when lives are in danger, all else just becomes “stuff”—yet it is an accumulation of a lifetime for many and something they hoped to pass on to their children.  And I see that some residents in the Carolinas that had just rebuilt from previous hurricanes are going through it all over again.   So while we had a lot of water damage in our garage which is on the ground level of course, it didn’t come up into the house. 

However, one of my sons drove down to Myrtle Beach, S.C. last Sunday for an extended vacation.  Myrtle Beach has been under curfew and my son is now “riding it out” because roads leading home are impassable at this time.  This will be one of his “most memorable” vacations, but if we escape without damage to life and limb, we’re still okay. 

But after watching several weather newscasts tonight on the computer, the loss we suffered was NOTHING compared with what our neighbors in North & South Carolina are dealing with.  Despite all this, believe it or not, God has promised to never destroy the earth again by a flood.  That’s the reason for the rainbow in the sky.  https://www.biblegateway.com/passage/?search=Genesis+9:11-13&version=NLT  

We’ll just have to pray that there will be a minimum loss of life.  Thank God for all those rescue workers from all over who are often risking their own lives to help others. 

Okay will go for now. 

Love Loretta

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So just to brag a bit about our military, I’m putting this article here about Oceana.  And we couldn’t be more proud of our Virginia Beach based Navy SEALS including Seal Team 6!  Okay just had to give a shout out to those unsung heroes who keep us safe!

1.  http://www.militarybases.us/navy/oceana-naval-air-station/

"Oceana Naval Air Station

NAS Oceana the second largest employer in Virginia Beach. It supports the Navy’s Atlantic and Pacific Fleet Force of Strike-Fighter Aircraft & Joint/Inter-Agency Operations. Together with Dam Neck the base has about 10,500 active Navy personnel, about 10,000 family members and 4,500 civilian personnel.

 Naval Air Station Oceana is the Navy’s East Coast Master Jet Base, home to the F/A-18 Hornets and the largest Fleet Replacement Squadron, VFA-106. Its primary mission is to serve as a Shore-Based Readiness Integrator, providing the facilities, equipment and personnel to support shored-based readiness, total force readiness and maintain operational access of Oceana-based forces.

 Oceana is home to eighteen Hornet and Super Hornet squadrons. Sixteen squadrons deploy on carriers into combat and two are permanently based at Oceana, including the adversary squadron. Routinely, two-thirds of this complement is “working up” on carriers off the coast or deployed at NAS Fallon, Nevada for live air-to-ground and air-to-air weapons training. NAS Oceana averages one take off or landing every two minutes for an average of 325,000 flight operations per year.

 Location

1750 Tomcat Boulevard, Virginia Beach, VA 23460"

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Aloha Cindy said:

Still Waiting

Just wanting to tell you where I am in this whole process of assessing the new growths in the mesentary.  Nothing...After traveling to Oahu to see this Gynecological Oncologist he will confer with the oncologist here on the Big Island before making any decision steps forward. So I wait some more. It looks like I'm not getting any info until I see the Oncologist here in October. Although the Dr. in Oahu said he will call me. So I wait.

Thanks 4 checking N~but not happy w/the "waiting" plan

Hey Cindy –

Just wanted to say that I've read of many who "fall through the cracks" while waiting.  I hope you're the aggressive type.  Why must you wait till October?  I don't want to scare you, but I just want you to have some "names and numbers" when you talk to these people.  Then check back with them periodically.  Have there been any cancellations of appointments?  If so, can you be put in their place?  I know of one lady who waited three weeks, and when she checked back, the papers were still lying on one person's desk, and had not been forwarded to the people who should have been working her into the schedule.  Of course, this happened to be in the UK, but that happens in the US also.  I know you feel the same as I do.  UUUggghhh!

Every time something new pops up my doctor always schedules a scan RIGHT AWAY.  We're both on the same page, and when I express a concern, he addresses it "then".  When the scan results come in, he calls me back to discuss the results and "our" plan of action.  He does listen to me because I'm the one with the cancer.  It gives me peace of mind to know that my doctor thinks it is as "urgent" as I think it is.  

Have you been given a "definitive" answer as to why you must wait till October to schedule a biopsy?  You are in pain and obviously it’s related to the new growth you now have. 

You said on the 16^th, “This appointment on Wednesday (yesterday)  is what he calls a consult. Then he will schedule the biopsy. So I have some time to wait. I'm hoping for least some answers on Wednesday.”  So is the biopsy scheduled for October, or will you have to wait till October and then be told when a date is certain?

We who read this letter know how disconcerting this “waiting game” is and yes, it’s a big test of your mental faculties to “not put yourself on the operating table, and imagine all kinds of possibilities—none of which are good when we go that route.  I know that it is a constant struggle on many days to keep my mind calm when things are happening over which no one has a good idea of the outcome.  So once you have made all the contacts, and “moved all the people you know to contact” all you can do is WAIT, and THAT IS HARD TO DO.  But you need to keep your mind on positive thoughts and not all negative ones. 

By the way, do you live in the states, or are you traveling from here back and forth to Hawaii to see the gynecologic oncologist?  We both know that with your history, this new problem and the accompanying pain needs urgent attention.  Would that some of these professionals could actually walk in our shoes.  Then ASAP would move us to the front of the line.  Sometimes it is true that the squeaky wheels gets the grease.  So don’t be shy about being adamant that your issues be addressed ASAP.

Thanks for checking in although I’m not happy with “waiting” for a scheduled biopsy.  Why could it not be scheduled now, and October “early” be the actual date of the testing?  Okay didn’t mean to upset you further, but I’m as disappointed as you with the time frame!

Keeping you in my prayers,

Loretta

Aloha Cindy said:

Finally some info

Well after three weeks of worry the Dr. is giving me a choice. Either I have surgery to remove the growths there are three(6.7cm x 6.7cm x 7.9cm & 11.3cm x 3.4 & 2.9 cyst) which could involve the small bowel and there is the risk of not being able to remove it all and then going on chemo or I can just go on chemo then possibly need surgery. It has only been six months since I had chemo for ovarian cancer, these lesion have grown in that short of time. I decided to do the surgery first then chemo because no one knows for sure what all this is or what the future holds.

My ovarian tumor originated from the appendix and seeded in the peritoneal cavity. Chemo for ovarian canccer would not have done anything.  Or have them re-visit your original pathology.  If there is any chance that it originated in the appendix, you need to get to an appendiceal specialist before your next surgery.

Aloha Cindy said:

Finally going to surgery on Friday

Well after phone calls from the oncologist I had for chemo in Chicago. She confered with the oncologist in Oahu, Hawaii. He decided to recommend the surgery rather than doing chemo first. He left it up to me. I feel it is so soon after I finished my initial chemo and my CA 125 is at 17 maybe just maybe this isn't cancer (Well I can hope can't I?). My contingency plan is to ask for the HIPEC treatment while in the hospital.

I'm flying over to Oahu from the Big Island tomorrow. Will meet with Doctor then check-in to the Hope Lodge. On Thursday I do my pre-admit. Then check-in and surgery on friday afternoon, at least a three day stay then overnight at the lodge and home the next day.

The worst of all this is the fear of the unknown. Once I know what it is I'll deal with it. 

It's not a simple add-on.  You want to be at a center with expertise in the process.

Hello again Cindy ~

 Enough already!  That old saying, “Round and round she goes and where she stops nobody knows” is certainly true of cancer, isn’t it?  No doubt your WBC was down, and that contributes to catching germs.  And then sometimes you have to go places where people are coughing and hacking, especially in the oncology lab.  Honestly, one day when I went in and there were 50 people in the waiting area.  Most of them had to go through lab checks.

 Now I don’t know what kind of “blood thinner” your doctor put you on, but if it is Coumadin (Warfarin) be careful of the Vitamin K content in the foods you eat.  The darker green the color, the more Vitamin K.  Now my husband is on Eliquis and he can eat anything he wants and not have to worry about Vitamin K negating the effects of the medication.  Coumadin is “cheap”—Eliquis is EXPENSIVE!

 Thanks for checking in.  Nothing is simple is it?  It’s hard to bounce back when you’re constantly being “hit” with something new.

 Love & prayers,

 Loretta