Scared - Bad luck

  Dear “Bluesmama”

 Interestingly, I just keyed in your original diagnosis and up came an abundance of ladies discussing the same problem.  All who read this understand “devastated”.  We only have to go back in our mind to the day we learned “out of the blue” that we had cancer.  I, for one, had little pain, but thought perhaps I might have strained my muscles and had a hernia.   After a trip to the ER, my hernia suddenly had a new name, “Peritoneal Carcinomatosis.”  So we know what it’s like to be “floored” by something we had no idea was going on inside our bodies.  A second opinion revealed that cancer was in my ovaries as well.  Now I had my uterus removed at age 36, but opted to leave in the ovaries and fallopian tubes.  Now I’ve since learned that Ovarian cancer can occur even after the ovaries are removed. 

 In your case, you opted to leave one in.  No doubt you’re second guessing that now, that this your one remaining ovary has grown to be 12cm.  By a conversion chart, that equals 4.724409 inches.  Let’s just be honest, that would scare anyone.  And had I known that Ovarian Cancer could recur even if both ovaries had previously removed, I certainly would have told my gynecologist to remove everything.  I was not going to have any more children.  But I suppose the doc decided that it would be better to have the hormone factor left in. 

 I can’t begin to advise you, only to tell you that no doubt there are others here who will respond that have a direct correlation with your situation.  I found this discussion here on the CSN site that dates a while back, but is discussing the same situation that you fear you have.  And yes, your gynecologic surgeon would be the best one to return to.  All your records are there.

 Knowing how cancer can just “pop up” out of nowhere, I, for one, have no idea as to what the gynecologist  will suggest, but probably most like refer you to your original surgeon.  Below my name are a couple of links just for reference.  One is a detailed guide for endometrial cancer.  And the second one is a very long discussion between different ladies who have had the same questions and anxieties that you expressed to us today.  You ask, could the radiologist be wrong?  None of us could answer that. Could it have spread?  According to the ladies talking in the link below, yes.  But you will know soon.  It would be great if the radiologist were wrong, but the size of the ovary has you upset, as well it would me.  I’m due for a PET/CT scan on October 3^rd because of unexplained new aggravating symptoms.  Since the PET shows live activity, it would certainly seem that a PET scan would answer your questions as well. 

 Although I’ve not been helpful, I wish to acknowledge your presence here so you will know that as your fears become founded or not, some of us may be able to help.  We are naturally “on edge” when all of a sudden things pop up out of the “blue” that changes all our plans.  Being a realist, I refuse to think, “Augh probably nothing.  Each time I experience new symptoms, which I have presently, I’d rather entertain the possibility that it is a progression, but pray that it is something that “I can live with.”

 If this is a metastasis, we can all pray that it’s in a place that can be treated.

 Loretta

 Peritoneal Carcinomatosis, Ovarian Cancer Stage IV               

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1.  http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-treating-by-stage

2.  https://csn.cancer.org/node/208396

   A very long discussion link between ladies who had the same diagnosis as you, but I didn’t see your name, so I thought you might benefit by reading some of their entries.

Sorry

Sorry for the news, bluesmama.  I know you will have a lot on your plate when your results come back and you have surgery.  If you are up to it, please let us know how it goes.  My thoughts are with you.  You will make it through this. 

 My Dear “Bluesmama”

 You ask, “Am I Blue?”  I sure am because I don’t like anything about this report.  This sounds “ominous” and familiar—a large mass sitting on the colon and bladder. 

  After you look at some of the links below, you will see why the doctor wants to put in an “intraperitoneal” port.  I would want that. Because of the length of the Sloan Kettering article on “Intraperitoneal Chemotherapy”, I will not try to copy it all, but I will put a short summary there.  You may not check back here today, but if you do, please consider the extra step of having a chemo bath after the tumor or tumors are removed (if that is the case.)  Your surgeon is preparing for all possibilities.  Now, I will be honest and say that this treatment is hard on the body but if you can endure it, it is designed to kill traces of cancer cells that are in the abdominal space but have not yet been “picked up” by a scan.  It’s sorta like “sweeping a mine field”—my description. 

 Now Sloan is talking about “debulking surgery in this article.”  I’ve had this and it is major surgery.  So when I went into surgery, I was told that they (UPMC) would remove all non-essential organs.  Since my appendix had been removed at age 12, and my uterus at age 36, that was two of the organs that would have been removed.  After pre-op chemo of Carboplatin & Taxol, I had the “Cytoreductive Surgery” (CRS) on July 1, 2013.  So brace yourself as best you can. 

You may wake up and find that more than your remaining ovary was removed.  I understand the reasoning behind removing as many potential places to which the cancer could spread as possible.  I had my ovaries, fallopian tubes, spleen, gallbladder, omentum and parts of my intestines removed.  So if you wake up and find out that more parts are missing than you anticipated, please consider it a “pre-emptive strike” against the “invader” who would like to occupy the abdominal space. 

Now I never heard the word “omentum” before and had no idea about what it was.  Being overweight already, I knew I had some extra “fatty layers” that didn’t appear until after the birth of my first child.  But now, I found that in addition to the fat I could see on the outside, there was also another “fatty layer” on the inside.  So if you’re not familiar with the “omentum”, then check out the link below relative to that body part.  The “omentum is a fatty layer that insulates the abdominal organs.

 But I see that it’s a great “potential spawning place”—again my definition, for cancers to spread!   My initial diagnosis was Peritoneal Carcinomatosis.  That meant that I already had multiple floating tumors in my abdominal fluid.  I had not been experiencing any kind of pain for any length of time.  It was just sorta’ like “all of a sudden I felt the small lump” on the left side of my abdomen just below the waist, and one weekend some groin pain.  The “knot” moved around a little when I felt it.  Within a couple of weeks, what I thought might be a hernia had been diagnosed as “Peritoneal Carcinomatosis” (a Stage IV cancer).   Talk about a shock.

 But I immediately started researching this cancer, and within 3 weeks I was at the University of Pittsburgh Medical Center for a 2^nd opinion.  There I had exploratory surgery.  At that point they recommended chemotherapy and then a 2^nd consult.  Thankfully the pre-op chemo of Carbo/Taxol reduced the number and size of the tumors enough for me to have the Cytoreductive Surgery on July 1, 2013.  And I’m still here today, having a good quality of life, considering what my diagnosis involves.

 So “Bluesmama”, know that I, as well as many others that read your letter, will be praying for you, of that I am certain.  You have to do what you have to do. I pray for all the attending physicians and nurses that will have your life in their hands. May God give you and your family peace and understanding in this stressful time. 

 Love Loretta

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 1.   http://www.laparoscopic.md/digestion/omentum

“The omentum as fatty tissue that insulates the abdominal organs

 The omentum is a membranous double layer of fatty tissue that covers and supports the intestines and organs in the lower abdominal area. The omentum is made up of the greater omentum which is an important storage for fat deposits and the lesser omentum which connects the stomach and intestines to the liver.

 Milky spots on the greater omentum contain white blood cells that assist immunity by removing cellular debris…”

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 2.   http://www.uchospitals.edu/news/2011/20111030-omentum.html

 “Fat cells in abdomen fuel spread of ovarian cancer

 Similar process may boost growth of other cancers

 October 30, 2011

 A large pad of fat cells that extends from the stomach and covers the intestines provides nutrients that promote the spread and growth of ovarian cancer, reports a research team based at the University of Chicago in the journal Nature Medicine, published online October 30th, 2011.

 Ovarian cancer, the fifth leading cause of cancer deaths in women, tends to spread within the abdominal cavity as opposed to distant organs. In 80 percent of women, by the time ovarian cancer is diagnosed, it has spread to the pad of fat cells, called the omentum. Often, cancer growth in the omentum exceeds the growth of the original ovarian cancer. 
 

"This fatty tissue, which is extraordinarily rich in energy-dense lipids, acts as a launching pad and energy source for the likely lethal spread of ovarian cancer," said study author Ernst Lengyel, MD, PhD, professor of obstetrics and gynecology at the University of Chicago. "The cells that make up the omentum contain the biological equivalent of jet fuel. They feed the cancer cells, enabling them to multiply rapidly. Gaining a better understanding of this process could help us learn how to disrupt it."

 The researchers performed a series of experiments to identify the role of these fat cells as major mediators of ovarian cancer metastasis. The first step was to understand the biological signals that attract ovarian cancer cells to the omentum and use it for rapid growth.

 The spread of ovarian cancer cells to the omentum can happen quickly. Ovarian cancer cells injected into the abdomen of healthy mice find their way to the omentum within 20 minutes. The researchers found that protein signals emitted by the omentum can attract the tumor cells. Inhibitors which disturbed these signals reduced this attraction by at least 50 percent.

 Once ovarian cancer cells reach the omentum, they quickly develop the tools to devour the sustenance provided by this fatty tissue, reprogramming their metabolism to thrive on lipids acquired from fat cells. Ovarian cancer can rapidly convert the entire omentum, a soft fat pad, into a solid mass of cancer cells.

 "This mechanism may not be limited to ovarian cancer cells," the authors note. Fat metabolism may also contribute to cancer development in other environments where fat cells are abundant, such as breast cancer…”

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 3.  https://www.mskcc.org/blog/intraperitoneal-chemotherapy-better-underused-option-women-advanced-ovarian

 “…Summary

 Intraperitoneal (IP) chemotherapy delivers drugs directly into the abdominal cavity, bathing cancer cells in them. Though the treatment, which was pioneered for ovarian cancer at Memorial Sloan Kettering in the 1980s, is highly effective, it remains underused at other cancer hospitals. MSK gynecologic surgeon Dennis Chi discusses how it works, which patients benefit most, and why some doctors may still be reluctant to use it.

           Highlights

 Intraperitoneal (IP) chemotherapy delivers drugs into the abdomen.

• It was pioneered at MSK in the 1980s for ovarian cancer.

• It has proven to be effective in multiple studies.

• The treatment is still surprisingly underused by many doctors.

  Intraperitoneal (IP) chemotherapy, which delivers drugs directly into the abdominal cavity, has long been known to significantly extend the lives of women with advanced ovarian cancer. But despite the treatment’s success, a widely reported recent study showed that nearly half of American hospitals don’t offer IP chemotherapy to eligible patients.

  This underuse persists despite decades-old research showing the treatment could add 16 months or more to women’s lives compared with intravenous (IV) chemotherapy alone when used after optimal debulking surgery, which usually involves removing not only the ovaries but also the uterus, cervix, fallopian tubes, and most or all visible tumor cells.

  MSK pioneered IP chemotherapy in the 1980s and has long considered the treatment to be the standard of care for ovarian cancer. Dennis Chi, Deputy Chief and Head of the Section of Ovarian Cancer Surgery, discussed with us how IP chemotherapy works, who is most likely to benefit from it, and how MSK has led the development of the treatment.

            How is IP chemotherapy given at MSK?

  We perform IP chemotherapy on an outpatient basis after optimal debulking surgery. A catheter is surgically inserted into the patient’s abdomen and connected to an access port that is implanted under the skin. This allows chemotherapy to be dripped into the peritoneal cavity — the area between the muscles and the organs in the belly. We ask the patient to move around periodically during the infusion to make sure the chemotherapy fluid distributes throughout the peritoneal space. The process takes a few hours, and then the patient can go home. The infusion is repeated five times over a period of months…

  Intraperitoneal Chemotherapy: A Better but Underused Option for Women with Advanced Ovarian Cancer

  “…Why does this form of chemotherapy appear to work better than standard IV therapy in many patients?

  It’s not completely known why it works as well as it does. Since the chemotherapy fluid remains in the abdomen and dissipates over time, the obvious first theory is that we’re bathing cancer cells in it. Another theory is that it’s a double hit, since the chemotherapy then gets absorbed into the bloodstream and goes to the cancer a second time.

  Which patients are most likely to benefit from IP chemotherapy?

  There are no hard-and-fast rules, but the patients who benefit the most tend to have stage III ovarian cancer, in which the disease has spread beyond the ovaries but is confined to the abdomen. About 65 percent of our patients have been diagnosed with stage III cancer and have received optimal debulking surgery. About two-thirds of these stage III patients undergo both IV and IP chemotherapy following this surgery. We may also consider IP chemotherapy for patients with stage IV ovarian cancer if extensive surgery has first removed all visible tumor traces, even if the disease has spread to the liver or spleen…”

  __________________________End of references_______________________

Well my dear "BluesMama"

By now, you've arrived at the hospital for your surgery, if you were not there already.  Mixed emotions could not run higher for you.  It has to be one of the most suspense-filled days of your entire life.  And I do mean "suspense filled."  No doubt so many are calling your name in prayer this morning that even God is saying, "Okay--okay--okay--trust Me.  I know what's going on!"  Now, I don't know what happens between Heaven and Earth when we pray but God wants us to pray for one another. Now how God processes those prayers is not for any of us to know, but it's comforting to have so many supportive friends that mean it when they say, "I'm praying for you."  So "BluesMama" rest assured God knows your name and is right there in the operating room this morning.  We're praying for you and your doctors.

Love Loretta

Hooray~U've made it through & lived to tell about it!

 Good morning “BluesMama”

 All I could do was “moan” as I read about your surgery and your hospital stay.  I remember 40 years ago when I was in a semi-private room with a smoker.  Back then smoking was O.K.  Often in the old “LIFE magazines”, cigarette ads were prominent, and there would be doctors promoting different brands that were soothing and satisfying.  Movie stars photos were often featured, and smoking was the cool thing to do.  Interestingly in our day, everything was “COOL”.  “Cool man” was an everyday expression for something we thought was good.  Now everything is “HOT”.  But guys were “cool” in my day.  O.K.   -  Well when visiting hours came the family and friends came in and smoked too.  I was lying there helpless as were you.  I had a big long incision with stitches because I had just had my uterus removed.  No laparoscopic procedures back then.  So I relate completely with your “heart attack lady” who would not be comforted!  I like Frank Sinatra’s style but I can’t sleep and listen to loud music at the same time!  You needed to be in a private room.  Glad the nurses realized you needed a different place to recoup.

 Now as to “no port.”  As I understand it, the port would be put in at time of surgery for future use for intraperitoneal chemo treatments.  Actually, I’ve read that they are “brutal” and most patients cannot complete an entire series, so maybe that’s a good thing that you don’t have a port. 

 Now once the surgeons got a look on the inside, I’m curious as to why no nodes were taken for biopsy on the right pelvic area.  You had a lot of activity down there.  I’m glad you told them to take out the appendix.  You can certainly live without that. 

 As for the rectal tube, I can identify with that.  I’m sure you had no comfortable sleeping position.  Also, I had an incision for my Cytoreductive surgery that started between my breasts and went down to the pubic hair.  I developed a massive infection and was on a wound vac and was in the hospital for 42 days.

 Now as for the Lovinox shots, I know you’re glad you have a hands-on RN mom.  From time to time, I have to stop my Coumadin (regimen) and have to give myself the hots.  So I could have well given myself your name “Blues Mama”, or shall I say, “Bruised Mama.”  My hand would shake as I put that tiny needle into my abdomen, and I had big blue bruises all over my stomach.  But of course, my bikini days are long past.  In my day, bikinis were not in vogue!  But you don’t want any blood clots to form, and you can survive that.

 And I can relate to the physical therapist, approaching my door with a smile, which I interpreted as a “sinister grin.”  I thought “I know why you’re here and no I don’t feel like taking a walk, and I don’t want to go with you.”  Nevertheless, with a helper on each side holding me up, and carrying along the pole with the bags hanging, I made it a few feet down the hall and back, but only with assistance.  And it was no better when they came in one morning and asked, “Do you have steps at home?”  Well, you know what that meant.  Yep, today “we’re going to go up and down some steps!”  So I could never have done as well as you’re doing already.  And of course, I suppose you came home with a spirometer to use often during the day to be certain your lungs are okay.

 And as for the “healthy look”, they were only “looking”—not “feeling your pain.”  And will the hydrocodone meds for pain cause a constipation problem.  If so, have you ever used Milk of Magnesia?  I’m not on any pain meds, but constipation and alternate diarrhea have been my companions after my surgery.

 That said, I’m curious as to what actual diagnosis you were given after it was all said and done?  Did they give you an actual stage?  Also are there any post-op (adjuvant) treatments scheduled?  What’s the follow-up plan?

 Lastly, I’m glad you found another Asian friend that you could identify with.  Not that we want another person to have Ovarian cancer, but those of us who’ve “been, or are, going through it” fully understand and can sympathize with our sisters.  I’m glad you’ve “weathered the storm” and hopefully you’re going to soon not be “blue” as in a bit “beaten up” by all you’ve been through.  I know you’re not feeling so healthy, but your attitude is good, and that’s very important.  Thanks for giving us an update. 

Incidentally, "don't sweat the hot flashes if they come", they don't last as long as a cancer diagnosis!  Some things are easier "fixed" than others. 

 Wishing you all the best,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 P.S.  I’m looking healthy on the outside, but inside my cancer has advanced considerably, so I’m about to begin another chemo regimen, which I don’t look forward to, but it’s a choice of going downhill more quickly if I do nothing.  And while I suspicioned that since I had one really bad weak when I felt I actually had cancer (some days I can actually be so busy that I don’t think much about it).  So I asked my oncologist to schedule a PET scan.  Last Friday I got the results, and now the choice is mine to make.  I’ll probably go back on the Carbo/Taxol regimen, since the one Immunotherapy trial he thought would be good for me, doesn’t have another opening till the first of the year. 

I have just read about another clinical trial that has been through the third phase and the “progression free survival” time has been greatly increased, but it’s not yet been approved by the FDA.  So I hope that happens soon.  I will talk to the oncologist later today, and mention this to him.  But I haven’t told him anything yet that he doesn’t already know about, so that’s comforting in a sense.  He follows my lead as to how I feel, and responds accordingly.  He is totally honest at all times.  That’s a comfort.  The last thing we need is a doctor that knows more than he is “willing” to share with us about our own body!  That happens you know. 

 The name of the drug is “NIRAPARIB”.  It was just published in a New England Journal of Medicine article.  There may be others who read this and want to mention it to their oncologist.

Hello again=

By all means get all dental work done prior to chemo, if chemo is scheduled soon.  

And before I started chemo, I went down to a wig shop while I still had hair, picked out a color closest to mine, and tried on several different ones.  No I really wasn't fond of any of them, but didn't want to go bald.  

I wore the wig when I went to some important function, but I found I was most comfortable wearing "false bangs" attached by a velcro strip to my turbans.  I bought some turbans in different colors to match my clothes, and bought more than one color of canes, since I never felt steady on my feet once the chemo started.

 I find "Chemocare.com" to be all inclusive for info relative to all types of chemotherapy drugs.  It's really important to keep your white blood cell count up.  So after each of my regimens, I went in the following day and received an injection of Neulasta along with some hydration and steroids.  In each chemocare article they will list the actual number of days from the start of your treatment until your WBC is lowest and you are most susceptible to germs.  So it's important to keep your immune cells working at top capacity.  I never had to miss a session because  of a low white blood cell count.  I had a series of 6 chemo sessions, each one 3 weeks apart.  My WBC never dropped to a point that I had to miss a session.    

And protein is important too, but for now, thanks for getting back in touch, and check back in when you need to or feel like someone can share their experience that will also be helpful to you.

Wishing you all the best,

Loretta

Hey there BluesMama - was just going to retire for the night and I see your post.  Let us know when the tumor board reaches a conclusion and treatment regimen,   Don't diagnose yourself until they do.

 It's been a long time since I had a hot flash, but I do remember what they're like.  I still remember the pain of childbirth too.  Some things leave a "lasting" impression.  And as for your walking, are you overdoing it a bit?  I know walking is good, but you've had a lot taken out of you, you know!  My energy level has never been the same since my surgery.  I do wrestle with fatigue.  My husband thinks I haven't "slowed down" but I know I have.  I've always been "high energy" and a "work horse" of sorts.  I'm a list maker, and these days I'm not getting as many things "checked off" as I would wish.  But I don't intend to "fight this cancer" lying down.  That will come later since I am Stage IV.

 Now I am truly not looking forward to beginning another chemo regimen, but the cancer will win more quickly if I do nothing.  So I'll give it one more trial.  Oh where in the world are all those "just-around-the-corner breakthroughs" that we Ovarian cancer patients are looking for?  We dream of a day when something will be discovered that will help us all.  And hey, why not give Ovarian cancer the same amount of research money as the ladies in "pink" get?  You know women have 2 ovaries as well as 2 breasts!  I'm hopeful that something will come along soon, but at the same time I realize that I've got to "dance with the one whut brung me!"  That's an old expression that means I've got to live with what I've got and not what I wish I had.  Okay goodnight for now.

Love & prayers,

Loretta