Mom's Diagnosis

andrrea said:

Hi Loretta - thank you so

Hi Loretta - thank you so much for the information!!!!  We were told that prior to any discussion about surgery, chemo was needed in order to try and reduce the size/amount of cancer.  Basically that her body wouldn't heal.  HIPEC is only offered in one hospital here in Toronto and I've spoken with surgeon - Dr. McCart.  My mom isn't currently elligble, not sure about the future.  We are getting a referral to another hospital here (Princess Margaret) but opted to start treatment.

Good afternoon Andrrea~

          It may still be the case that Cytoreductive Surgery (CRS) and/HIPEC may still be an option after the chemo sessions.  CRS was not ruled out until I had my Second Opinion at UPMC, and tumors were so large that reduction in their size was the first criteria.  So, after the 6-treatment regimen of Carbo/Taxol, surgery was possible.  So it may still be the same for your mom.  I hope she is in good health otherwise, because it is major surgery, not that Stage IV isn't Major!  Both are!  But keeping Mom as strong as possible during the chemo sessions will be your NEXT aim.  The U.S. and Canada have good diplomatic and economic ties, but when it comes to "health care", we can't be beat.  My choices were not "limited" as to where I could go for treatment.  It was just "to WHOM to go to" once I made myself aware of all the possibilities for treatment.  So I'm not a fan of universal health care, but like the old saying, "bad breath is better than no breath at all!"  So you're smart to get that SECOND opinion. 

          My comments about the Canadian Health Care system is based on my many relationships with patients from Canada who signed on to the Esophageal Cancer forum here.  My husband is now in his 14th year of cancer-free survival from another rare cancer, Esophageal Cancer, Stage III.  And often, we would give them advice as to what to ask for, but the doctors there would not always agree.  But I'm glad you're here, and no matter where you live, the pain and the cancer are the SAME unfortunately. 

            Also, when I was being told about possible repercussions of this CRS surgery, the doctor mentioned an ileostomy.  http://www.healthline.com/health/ileostomy#Overview1

But when I woke up, that not-so-good possibility didn’t happen.  And I’m glad, because that’s a whole new set of problems.  But still, if it were necessary in the process of “staying alive”, it would have become “second nature” to me.  We will tolerate myriads of “inconveniences” in order to be as “normal as possible.”  Now I will say that I was a bit disappointed that I didn’t have the “hot chemo bath” because clinical trials show that it gives a longer survival time to OC patients.  I was healthy and had no other medical conditions, but still the surgeon did not elect to let me have that, so I’m not “crying over spilt milk”, I’m glad to have been a candidate for the surgery PERIOD.

            Incidentally, men can have this surgery also.  While I was at UPMC, there was a young lad there of 23 or so, who had the CRS and the HIPEC treatment.  His appendix had burst and as a result peritoneal cancer had occurred. So it isn’t always just a woman’s cancer. 

            And my prayer and wish for your Mom is that she will tolerate the chemo well, and then become a candidate for the surgery.

Sincerely,

Loretta

_________________________________________________

1.  http://webcasts.umm.edu/videos/hipec 

Andrrea -This is a good series as to what CRS and HIPEC involve.

“Cytoreduction and Hyperthermic Interperitoneal Chemotherapy (HIPEC)

Hyperthermic interperitoneal chemotherapy (HIPEC) is a technique used in combination with surgery to treat various gastrointestinal cancers, peritoneal mesothelioma and ovarian cancer that have spread to the lining of the abdomen.  On Tuesday, June 30, the University of Maryland Marlene and Stewart Greenebaum Cancer Center will premier a webcast of this operation.

Watch as surgical oncologist, Nader Hanna, M.D., head of the division of surgical oncology and an associate professor of surgery at the University of Maryland School of Medicine, meticulously removes all tumors from the stomach cavity, known as cytoreduction, before beginning the HIPEC process. 

Once all visible tumors are removed, the patient is connected to a series of catheters and a pumping device that bathes the entire abdominal cavity with the chemotherapy drugs for approximately 90 minutes.  “This treatment option is best for patients with advanced abdominal cancers, including cancers of the appendix, colorectal cancer, gastric cancer, ovarian cancer and peritoneal mesothelioma,” explains Dr. Hanna.  The University of Maryland Marlene and Stewart Greenebaum Cancer Center was one of the first medical centers in the nation to offer the HIPEC procedure, beginning in 2004.

The hyperthermic interperitoneal chemotherapy (HIPEC) is administered at high temperatures directly inside the body.  The high temperature of the solution has been found to increase the drug's therapeutic effect. The fluid goes throughout the abdomen to treat any tumor cells that may remain after surgery. Both heat and direct contact with chemotherapy drugs kills the cancer cells.  Once that is over, the surgical team inspects the inside of the body to be sure there are no visible tumors and no trauma.

Clinical studies have shown HIPEC to be significantly more effective than systemic chemotherapy alone for GI cancers that have spread in the peritoneal cavity. Combined with tumor removal, HIPEC can improve survival and quality of life for patients who would otherwise have few if any options. The technique has also been shown to reduce pain dramatically.”

_______________________________________________

2.   http://www.ncbi.nlm.nih.gov/pubmed/15209191

“Surgical cytoreduction in ovarian cancer.

McCreath WA¹, Chi DS. - - Author information

Abstract

The majority of ovarian cancer patients present with advanced-stage disease, for which the goal of surgery is not only to document the extent of disease but also to perform surgical cytoreduction or tumor debulking. Cytoreductive surgery for ovarian cancer is generally performed at the time of diagnosis, when it is referred to as primary cytoreduction. It is also performed during primary chemotherapy (interval cytoreduction) and after disease recurrence (secondary cytoreduction). Over the past 3 decades, numerous retrospective analyses have established the role of primary cytoreduction in the management of advanced-stage ovarian cancer. However, recent studies have reported that certain patients benefit from a neoadjuvant chemotherapeutic approach, in which chemotherapy is given to those with presumed advanced ovarian cancer prior to cytoreductive surgery…”

_______________________End of references________________

 Dear Andrrea:

 Your mom and I have some things in common.  In November of 2012, I went to the Emergency Room because I thought I had a hernia. A couple of hours later, “hernia” quickly was spelled a “different way”.   Try Peritoneal Carcinomatosis, which was a Stage IV diagnosis in itself.  A SECOND opinion at the University of Pittsburgh Medical Center 3 weeks later, would also find that the cancer had infiltrated my ovaries as well as multiple tumors within the peritoneal fluid in my abdomen.  Exploratory surgery and a PET scan confirmed the fact that at that moment no surgery would be performed because of the size and number of tumors.   Dr. David Bartlett, recommended I return home and have a series of chemotherapy consisting of Carboplatin and Paclitaxel (Taxol).  He said that after that series of treatment, he would take another look to see if a procedure called “Cytoreductive Surgery” (CRS) would be possible.  So as God, not luck, would have it, the chemo reduced my tumors enough to be able to have that surgery.  It is sometimes called “debulking”, and the idea is to remove all non-essential organs to which the cancer will most likely eventually spread.   

 It was understood that this surgery would not be intended to be curative, but would give me a longer period of survival than would otherwise be possible.  And so after my chemo regimen, I returned to UPMC on July 1, 2013 for that surgery.  Sometimes a “hot” chemo bath called “hyperthermic intraperitoneal chemotherapy (HIPEC), is given.  When I went in for surgery, that procedure was mentioned as a probability, but once the surgeon performed this operation, he decided in my case, that the heated chemo bath should not be given.  Yes, that was a disappointment, but I had to leave the final surgical procedures up to the doctor.  After all, I had never had an “actual look” inside my own body, except for the PET and CT scan pictures which “told the tale.”  Originally the CT (Computerized Tomography) indicated the tumors were contained within the Peritoneal fluid in my abdomen.  However, when UPMC ordered a PET (Positron Emission Tomography) scan, my ovaries lit up like a Christmas tree, in shades of orange, red and yellow.  Incidentally, I suggest you see that Mom keeps a copy of all her scans and reports.  When I go in for a test of any kind, I always ask for a copy of my scans plus the written report as well. 

As for me, at age 36, I had only my uterus removed, but I guess the docs thought I might lose my mind if I also had my ovaries and fallopian tubes removed!  I read a little booklet which was written to prepare me for the surgery, and answered questions that women most often asked.  One of them was, “It won’t make me lose my mind, will it?”  The answer, “Not unless you were going to anyway!”  Now looking back, I wish the gynecologist had removed everything, because now these 40 years later, it is believed that most often Ovarian cancer begins in the fallopian tubes.  And indeed even after one has had a hysterectomy, it does not preclude Ovarian cancer at some later date.  (See reference below)

So in this case, doctors never tried to ascertain which came first, the Peritoneal Cancer, or the Ovarian cancer.  At this point, it doesn’t matter.  Except in the actual correct naming of the cancer.  When a cancer spreads (metastasizes) the “primary cancer” is named first with the organ to which it has spread listed second.  So in my case, I could write Peritoneal Cancer with metastasis to the Ovaries, or vice versa, Ovarian Cancer with metastasis to the Peritoneum.  In any case it is Stage IV.  So my best hope is that the chemo treatments I have had, which number two different sessions, the second being in June of 2015, plus the “debulking” surgery will afford me more quality of life.  So far I would say the cancer isn’t multiplying rapidly.  I will celebrate my 3^rd birthday since CRS on July 1, 2016.  Three years after this surgery is a blessing because I could have died already. 

 Now in 2014, I also had 3 cancerous nodes appear in the Caudate Lobe of my Liver.  For that I received a targeted radiation treatment which resulted in the complete eradication of those tumors.  So I’m wondering why doctors would say that there is nothing they can do, but give your Mom some chemo.  I know that this kind of diagnosis doesn’t lend itself to “constant snipping here and there.”  But I am enjoying a good quality of life all things considered.  Now conditions will always vary with each individual patient, depending on their own physical health at the time of diagnosis.  There may be medical conditions that would not be conducive to the patient having surgery.  But I would want to know why the doctors have ruled out any kind of surgery.  In my case, the surgery consisted of removal of my spleen, gall bladder, OMENTUM, ovaries, fallopian tubes, and resection of my intestines.  I had an appendectomy at age 12, but had I still had my appendix, that would have been removed as well.   

 My oncologist sees me once a month, and more often if necessary.  The last CT scan indicated that I now have Pleural Effusion and some gradual increase in the nodes that already existed.  Believe it or not, all in all, that is a good report, because it can also spread to other vital organs, and so far it is moving slowly.  You will find me to be a realist, and so sometimes my words might not be what one would like to hear, but “it is what it is.” 

 Now I’ll be frank, chemo side effects “laid me low” and robbed me of most all my energy, but even then I avoided Mouth sores, nausea, and I never lost my appetite.  Now isn’t that just like a lady who weighs 165 to not lose her appetite?  But I said, “I’ve counted my last calorie.”  Life is more than jumping on the scales every day and denying myself some delicious delicacy.  Cancer rearranges our priorities quite quickly.  And as things progress, I will probably lose some weight, so I’ve decided to put dieting on the back burner, after all “beauty really is only skin deep.”  And when one approaches age 78, the skin usually has a “few wrinkles.”  But we would be pitiful souls if our highest aim in life was physical beauty, would we not?

 So Andrrea, I would hope that your mother has had a SECOND opinion.  Usually insurance companies will pay for a second opinion.  And for peace of mind, if for no other reason, it would be wise to have a second opinion at a major medical facility where women’s cancers are treated often.  And I would choose one where the “HIPEC” procedure is practiced just in case that would be a possibility for your mother.  Other than that, I’m not knowing what to say, except I’m sure your mom agrees with me, that we want to be around for all our loved ones, and our friends and family “who need us.”  And we want to make wise decisions about our treatment as time progresses, and make the most of each day God gives us.  That’s my hope for your mother too.

 You’re doing the right thing by reaching out to “double check” behind the doctors and see if they are “giving it to you straight.”  Beneath my name, I will give you a few references that might be helpful.  It goes without saying that I wish that there was a “cure for cancer”, but alas that is not always the case. 

Sincere best wishes for you and your mom,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 _______________________________________________________

1.  http://www.cancer.gov/types/ovarian

2.  http://www.uofmhealth.org/health-library/ug5094

 “…How do you get a second opinion? Ask your doctor for the name of another expert, someone with whom he or she is not closely connected. Explain that this is how you like to make big medical decisions. Don't worry about offending your doctor. Second opinions are expected.  If you aren't comfortable asking your doctor for a name, check with your insurance company, a local medical society, or the nearest university hospital…”

 3.   http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-staging

 "...Stages of primary peritoneal cancer... 

Stage IV

 Cancer is not inside the ovaries or fallopian tubes (if it was, then it would be ovarian or fallopian tube cancer). Cancer is in the tissue lining the pelvis and abdomen (the peritoneum) and has spread further, such as to the inside of the liver or spleen, the lungs, brain, skin, or bones.

 4.   http://chemocare.com/chemotherapy/drug-info/cisplatin.aspx

 “…Cisplatin Side Effects:

 Important things to remember about Cisplatin side effects:

 Most people do not experience all of the Cisplatin side effects listed.

• Cisplatin side effects are often predictable in terms of their onset and duration.
• Cisplatin side effects are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent Cisplatin side effects.
• There is no relationship between the presence or severity of Cisplatin side effects and the effectiveness of Cisplatin.
• The Cisplatin side effects and their severity depend on how much Cisplatin is given.  In other words, high doses may produce more severe side effects.

 The following Cisplatin side effects are common (occurring in greater than 30%) for patients receiving Cisplatin:

Nausea and vomiting. Nausea may last up to 1 week after therapy. Anti-nausea medication is given before the infusion, and a prescription is also given for use after.

• Kidney toxicity.  Effects on kidney function are dose related, observed 10-20 days after therapy, and are generally reversible.
• Blood test abnormalities (low magnesium, low calcium, low potassium)
• Low white blood cells (this may put you at increased risk for infection)
• Low red blood cells (anemia)

 Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

 Onset: 10 days-- Nadir: 14-23 days-- Recovery: 21-39 days

 These are less common Cisplatin side effects (occurring in 10-29%) for patients receiving Cisplatin:

 Peripheral neuropathy: Although less common, a serious side effect of decreased sensation and paresthesia (numbness and tingling of the extremities) may be noted. Sensory loss, numbness and tingling, and difficulty in walking may last for at least as long as therapy is continued. These side effects may become progressively more severe with continued treatment, and your doctor may decide to decrease your dose.  Neurologic effects may be irreversible.

• High frequency hearing loss.  Ringing in the ears.
• Loss of appetite
• Taste changes, metallic taste
• Increases in blood tests measuring liver function.  These return to normal once treatment is discontinued. (see liver problems).
• Hair loss
• Your fertility, meaning your ability to conceive or father a child, may be affected by Cisplatin.  Please discuss this issue with your health care provider.

 Not all Cisplatin side effects are listed above, some that are rare (occurring in less than 10% of patients) are not listed here.  However, you should always inform your health care provider if you experience any unusual symptoms…

 5.  http://chemocare.com/chemotherapy/drug-info/gemcitabine.aspx

 “…The following side effects are common (occurring in more than 30%) for patients taking Gemcitabine:

 Flu-like symptoms(muscle pain, fever, headache, chills, fatigue)

• Fever  (within 6-12 hours of first dose)
• Fatigue
• Nausea (mild)
• Vomiting
• Poor appetite
• Skin rash
• Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.

 Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

 Onset: none noted-- Nadir: 10-14 days-- Recovery: day 21

Temporary increases in liver enzymes

• Blood or protein in the urine

 These are less common side effects (occurring in 10-29%) for patients receiving Gemcitabine:

 Diarrhea

• Weakness
• Hair loss
• Mouth sores
• Difficulty sleeping
• Shortness of breath (see lung problems)

 Not all side effects are listed above, some that are rare (occurring in less than 10% of patients) are not listed here.  However, you should always inform your health care provider if you experience any unusual symptoms..."

6.  http://csn.cancer.org/node/301646

 “Hello again Brian -  

This letter is an answer to what I promised you earlier about things I found helpful during my chemo sessions. .. As for Mom, it may be that she tolerates all of her treatments extremely well.  It may be also that as she progresses, the treatments may take a toll on her physically.  Either result will be normal, keeping in mind that chemo is never a “piece of cake”, but it is tolerable and can be very effective.  It has been for me…”

 7.  http://www.mayoclinic.org/medical-professionals/clinical-updates/cancer/cytoreductive-surgery-hipec-offers-effective-treatment-for-patients-with-peritoneal-carcinomatosis

 Cytoreductive surgery and HIPEC offers effective treatment for selected patients with peritoneal carcinomatosis

 “…In cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC), visible cancerous tumors are first removed from the abdominal cavity surgically. The cavity is then bathed with hot chemotherapy — heated to 42 degrees Celsius — to kill any microscopic cancer cells that remain. Hyperthermia augments the cytotoxicity of chemotherapy, and intraperitoneal installation allows for delivery of much higher doses locally than are possible systemically, while minimizing toxicity…”

7.1 https://www.youtube.com/watch?v=UeDDYt_5-Gw= another video describing HIPEC

  7. (2) https://www.youtube.com/watch?v=6lqnl-3WP7Y – video of HIPEC

HIPEC Procedure - Hyperthermic Intraperitoneal Chemotherapy

 Published on Sep 14, 2015

“A novel procedure called hyperthermic intraperitoneal chemotherapy (HIPEC) combines surgery, heat and chemotherapy, creating a powerful treatment that can dramatically improve the quality of life, and sometimes even extend it, for patients with these types of cancer.”

 8.  http://www.mayoclinic.org/diseases-conditions/ovarian-cancer/expert-answers/ovarian-cancer/faq-20057780

 “Is ovarian cancer still possible after a hysterectomy? - Answers from Shannon K. Laughlin-Tommaso, M.D.

 Yes, you still have a risk of ovarian cancer or a type of cancer that acts just like it (primary peritoneal cancer) if you've had a hysterectomy.  Your risk depends on the type of hysterectomy you had:

 Partial hysterectomy or total hysterectomy. A partial hysterectomy removes your uterus, and a total hysterectomy removes your uterus and your cervix. Both procedures leave your ovaries intact, so you can still develop ovarian cancer.

• Total hysterectomy with salpingo-oophorectomy. This procedure removes your cervix and uterus as well as both ovaries and fallopian tubes. This makes ovarian cancer less likely to occur, but it does not remove all risk.

  You still have a small risk of what's called primary peritoneal cancer, which may result from ovarian cells that migrated to the peritoneal area during each menstrual cycle before your ovaries were removed. These cells can become cancerous later on. Alternatively, since the peritoneum and ovaries arise from the same tissues during embryonic development, it's possible that cancer could arise from the cells of the peritoneum.

  Currently, there are no effective screening tests for ovarian cancer in women with an average risk of the disease. If you're concerned about your risk, discuss your options with your doctor.”

  9.   http://www.macmillan.org.uk/cancerinformation/cancertypes/primaryperitoneal/primaryperitonealcancer.aspx

  10.  http://www.primaryperitonealcancer.org/resources

  11.  https://clinicaltrials.gov/ct2/results?term=primary+peritoneal+cancer&recr=Open

  (My note:  Usually Primary Peritoneal Cancer is treated the same as for Ovarian Cancer patients.  However, some may qualify for, and elect to choose a clinical trial.  I don’t know if that is anything your mom would be interested in, but here is a listing for clinical trials, for which patients are being “recruited” or “not yet recruiting”.)

•  

  ___________________End of references_______________ 

MSLMSMU said:

Follow up scans?

Loretta,  how often does your doctor do the follow up scans? 

 Hi there –

Interesting photo~R these "religious pooches?"  Looks like they're headed to church!  Cute!

There really isn’t a “set time”.  It depends totally on what happens from day to day.  I have monthly visits with my oncologist.  Anytime I experience something new that needs closer examination he orders a “Chest, Abdomen & Pelvis” CT with Contrast. 

 As a matter of fact, without going back through my records, I’ve lost count.  So I began to think back over just what had happened since my diagnosis.  Of course, I had a CT when I went to my local ER for the first time back in November of 2012.  Then I had a PET/CT & exploratory surgery in 3 weeks later @ UPMC in Pittsburgh for my SECOND opinion.

 Then I came home with instructions to have chemo, and so I did.  That was in the spring of 2013.  So midway through the chemo regimen, I had a CT to check the effectiveness of the regimen of Carboplatin/Paclitaxel (Taxol).  Then at the end, three weeks after my 6^th & final treatment, I had another CT scan. 

 Then I had Cytoreductive surgery @ UPMC on July 1, 2013.  Today is my 3^rd birthday of a good quality of life all things considered since my diagnosis was Stage IV in the beginning with Peritoneal Carcinomatosis.  Then it was discovered to be in both my ovaries as well.  So “throw in Ovarian Cancer, Stage IV” for good measure.

 Then I had another routine CT scan in the summer of 2014, that revealed 3 cancerous nodes of my Liver, plus nodal enlargement.  So that resulted in targeted radiation via Cyberknife treatment.  (Two CT scans were given during that procedure.  One when the “gold seeds” were implanted around the tumors in preparation for the targeted radiation.  Then another scan a week later to ascertain the proper placement. 

 That procedure totally eradicated the nodes on the Caudate Lobe of my Liver.  So in September of 2014, I completed that radiation successfully.  And of course, a follow-up CT was ordered to confirm the results.

 Then in 2015, probably about May, I began to experience excruciating abdominal pain akin to child birth.  My stomach was distended, and I went to the ER twice in 2 weeks.  When I consulted my oncologist, he ordered a CT scan.  That scan revealed pending abdominal blockage.  So he “suggested” that I consider another round of chemotherapy.  Now I’m not one that thinks chemo will always be a magic bullet, but we discussed it, and he said that since it had been 2 years since my last chemo that he believed it would offer me many more months of quality of life.  He never “pushes” his opinion over mine, because I know my own body and strength level, and I’m the one who makes the final decision.  So in June of 2015, I began another round of chemo- (6 treatments - @ 3-week intervals) same chemo combo.

 So let’s see that meant another CT scan in the middle to check my progress.  Then another one at the end in September of 2015 to check results.

And now in May I complained of having a pain in my upper left chest, and so he ordered another CT scan.  This time it showed Pleural effusion, and slight enlargement of same cancerous nodes, but no new ones.  So I just completed an X-ray last week to measure the level of fluid in the area around my lungs.  I have an appointment on July 11^th to see what he thinks is best.  Now I don’t make those kind of decisions. 

After that CT result, I looked up Pleural effusion and some of the symptoms.  One symptom was a “cough”.  Interestingly, I had been having a dry cough from time to time, and wondered why since I didn’t have any kind of respiratory problems.  And now I understand why.  Now that’s where I stand today.  I don’t take any medications except for Coumadin for blood clots in both legs.  I’m not having any kind of pain that requires pain medication, although I do have some slight discomfort in my shoulder blade area in the back, which I imagine is resulting from the pleural effusion.  I do go to the lab each week for an INR check for my anti-coagulant, and once a month I also have a CA-125 check as well.  And he keeps a check on that and says he isn’t going to worry about a rise in the CA-125 count that doesn’t indicate a dramatic escalation.  So I would say he keeps a close check on me.

So as a result of your question, I began to “recall” just how often I had CT scans.  And so I came up with a total of eleven that I definitely remember since my initial diagnosis.  So to give you a long running answer to a short question, my oncologist orders a CT scan anytime I complain about anything suspicious unless my CA125 should take a drastic rise suddenly. 

 Loretta

 P.S.  And there isn’t any good tasting “contrast” flavors.  I’ve learned to get a “big straw” about the size of my little finger, and use it to drink the contrast more quickly.  That way it goes down easier. And of course, I keep it in the fridge.  The colder the contrast, the easier it is for me to drink.  And of course, afterwards we’re always told to drink lots of liquids in order to flush out one’s kidneys.  And I always schedule my CTs for the afternoon after 1:00 P.M.  That way I get to eat breakfast in the morning.  My instructions are always to drink the first bottle 4 hours prior to my appointment time, and the second one 45 minutes just before the scan.  (And after the scan, it usually results in diarrhea for several hours afterwards which is normal I am told.) 

LorettaMarshall said:

MSLMSMU~My long answer 2 your very short question!

 Hi there –

Interesting photo~R these "religious pooches?"  Looks like they're headed to church!  Cute!

There really isn’t a “set time”.  It depends totally on what happens from day to day.  I have monthly visits with my oncologist.  Anytime I experience something new that needs closer examination he orders a “Chest, Abdomen & Pelvis” CT with Contrast. 

 As a matter of fact, without going back through my records, I’ve lost count.  So I began to think back over just what had happened since my diagnosis.  Of course, I had a CT when I went to my local ER for the first time back in November of 2012.  Then I had a PET/CT & exploratory surgery in 3 weeks later @ UPMC in Pittsburgh for my SECOND opinion.

 Then I came home with instructions to have chemo, and so I did.  That was in the spring of 2013.  So midway through the chemo regimen, I had a CT to check the effectiveness of the regimen of Carboplatin/Paclitaxel (Taxol).  Then at the end, three weeks after my 6^th & final treatment, I had another CT scan. 

 Then I had Cytoreductive surgery @ UPMC on July 1, 2013.  Today is my 3^rd birthday of a good quality of life all things considered since my diagnosis was Stage IV in the beginning with Peritoneal Carcinomatosis.  Then it was discovered to be in both my ovaries as well.  So “throw in Ovarian Cancer, Stage IV” for good measure.

 Then I had another routine CT scan in the summer of 2014, that revealed 3 cancerous nodes of my Liver, plus nodal enlargement.  So that resulted in targeted radiation via Cyberknife treatment.  (Two CT scans were given during that procedure.  One when the “gold seeds” were implanted around the tumors in preparation for the targeted radiation.  Then another scan a week later to ascertain the proper placement. 

 That procedure totally eradicated the nodes on the Caudate Lobe of my Liver.  So in September of 2014, I completed that radiation successfully.  And of course, a follow-up CT was ordered to confirm the results.

 Then in 2015, probably about May, I began to experience excruciating abdominal pain akin to child birth.  My stomach was distended, and I went to the ER twice in 2 weeks.  When I consulted my oncologist, he ordered a CT scan.  That scan revealed pending abdominal blockage.  So he “suggested” that I consider another round of chemotherapy.  Now I’m not one that thinks chemo will always be a magic bullet, but we discussed it, and he said that since it had been 2 years since my last chemo that he believed it would offer me many more months of quality of life.  He never “pushes” his opinion over mine, because I know my own body and strength level, and I’m the one who makes the final decision.  So in June of 2015, I began another round of chemo- (6 treatments - @ 3-week intervals) same chemo combo.

 So let’s see that meant another CT scan in the middle to check my progress.  Then another one at the end in September of 2015 to check results.

And now in May I complained of having a pain in my upper left chest, and so he ordered another CT scan.  This time it showed Pleural effusion, and slight enlargement of same cancerous nodes, but no new ones.  So I just completed an X-ray last week to measure the level of fluid in the area around my lungs.  I have an appointment on July 11^th to see what he thinks is best.  Now I don’t make those kind of decisions. 

After that CT result, I looked up Pleural effusion and some of the symptoms.  One symptom was a “cough”.  Interestingly, I had been having a dry cough from time to time, and wondered why since I didn’t have any kind of respiratory problems.  And now I understand why.  Now that’s where I stand today.  I don’t take any medications except for Coumadin for blood clots in both legs.  I’m not having any kind of pain that requires pain medication, although I do have some slight discomfort in my shoulder blade area in the back, which I imagine is resulting from the pleural effusion.  I do go to the lab each week for an INR check for my anti-coagulant, and once a month I also have a CA-125 check as well.  And he keeps a check on that and says he isn’t going to worry about a rise in the CA-125 count that doesn’t indicate a dramatic escalation.  So I would say he keeps a close check on me.

So as a result of your question, I began to “recall” just how often I had CT scans.  And so I came up with a total of eleven that I definitely remember since my initial diagnosis.  So to give you a long running answer to a short question, my oncologist orders a CT scan anytime I complain about anything suspicious unless my CA125 should take a drastic rise suddenly. 

 Loretta

 P.S.  And there isn’t any good tasting “contrast” flavors.  I’ve learned to get a “big straw” about the size of my little finger, and use it to drink the contrast more quickly.  That way it goes down easier. And of course, I keep it in the fridge.  The colder the contrast, the easier it is for me to drink.  And of course, afterwards we’re always told to drink lots of liquids in order to flush out one’s kidneys.  And I always schedule my CTs for the afternoon after 1:00 P.M.  That way I get to eat breakfast in the morning.  My instructions are always to drink the first bottle 4 hours prior to my appointment time, and the second one 45 minutes just before the scan.  (And after the scan, it usually results in diarrhea for several hours afterwards which is normal I am told.) 

 

Michele, I am going to reply to my own "reply."  Sorry I didn't see your other entry here, till I had posted the above letter to you.  So see a very long letter to your other questions here - http://csn.cancer.org/node/303442#comment-1546152

Sincerely hope it helps.

Loretta Marshall, Peritoneal Carcinomatosis/Ovarian Cancer Stage IV