Peritoneal Carcinoma Questions to ask doctors?

Hello Lori ~

Just walked into the room to shut down my computer, and I find you here.  Lord willing, I will answer you in more detail tomorrow.  But for now, I will tell you that from what you say, it could well be that your mother has had a recurrence from the Ovarian Cancer that has spread to the peritoneal cavity.  Naturally, we would both hope that it is not the case, but as a realist, I cannot rule “in or out” possibilities until I’ve been completely tested.  In my case, when I had my hysterectomy at age 36, I only had my uterus removed.  I didn’t have my ovaries or fallopian tubes removed.  And I always have to say once more, “Ladies, if you’re going to have a hysterectomy, don’t mess around with leaving in the ovaries and fallopian tubes.” The fallopian tubes seem to be a villain in Ovarian cancer. 

And as for your mother having a complete hysterectomy, there are cells that can “sluff off” (my words) from the ovaries, and can lie dormant and later become cancerous, even though the actual ovaries have previously been removed.  I do have references to substantiate this finding, but for tonight, I am too tired to go into more detail.

I will tell you that lots of clinical trials are going on for Peritoneal and Ovarian cancer, and there is a site for that as well.  If this is ovarian cancer metastasized to the peritoneum, it will be Stage IV.  There are stipulations for patients to enter a clinical trial.  It can depend on whether or not they have received certain kinds of treatments. 

As for Immune therapy for Peritoneal Carcinomatosis, there is none that has recommended to me by my oncologist.  There again there are some other cancers that are responding well to Immunotherapy. 

As for the HIPEC treatment, yes it is done at the end of the Cytoreductive surgery, and those that have had it do live longer than those who do not have it.  Now I will tell you that if your mother is “healthy” otherwise, with no other medical problems, she should be able to “survive” the surgery—brutal though it is.  My surgeon, Dr. David Bartlett, at UPMC, told me that I might, or might not, receive the HIPEC treatment.  When I awoke, he had not administered the HIPEC treatment for me, although the University of Pittsburgh is one of the leading places for the HIPEC treatment.  The advantage of HIPEC is that it is confined to the peritoneal cavity and does not go through the bloodstream and all over the body. 

As for your doctors being bleak.  If they suspect that it is Ovarian cancer that has metastasized, then I can understand their hesitancy to say much until all the tests are done.  And also you are definitely doing the right thing to have a SECOND opinion.  And as for testing, your mother should be having a PET/CT scan.  It is better than a CT scan alone.  When I first went to my local ER, the hospital performed a CT and from that they diagnosed me as having Peritoneal Carcinomatosis.  The UPMC second opinion gave me a PET/CT and exploratory surgery, and that’s when the cancer in the ovaries showed up.

And while I am sometimes too blunt for some people, I will tell you that the Lord has allowed me to live twice as long as I should have.  I’m entering my 6^th year of survival—difficult yes—so while I don’t want to give you a false hope, I can tell you that your mother could possibly live several years even IF this is a recurrence.  Now I know you are being proactive and that is good.  So to say exactly what the diagnosis is, minus the actual determined diagnosis, we really don’t know what the treatments should be. 

After my first and second opinions, my treatment was with a chemo combo of Carboplatin/Paclitaxel.  There were so many tumors in my abdominal cavity that UPMC said I should have chemo treatments first.  I didn’t have any radiation, just chemo the first time around.  The chemo did reduce the number of tumors enough for me to qualify for the Cytoreductive Surgery (CRS).

The “Peritoneal” link is not as heavily read as is the Ovarian cancer link.  And it seems there it is harder to find good informative articles about PC as there are on other types of cancers.  But I must say one thing here, males can get Peritoneal Carcinomatosis too.  Cancers that originate in other organs and then migrate to the Peritoneal cancer are not limited to just we women.  Often colon cancer can find its way to the Peritoneal Cavity. 

Lastly, believe me there is never a time, as a mother or a grandmother that we want to part with any of our own children or our grandchildren.  You’re too young to give up your mother, and the children definitely need their grandmother.  My husband and I have raised 4 grandchildren from the time they were very young.  One still lives with us.  I told him just the other day, “You know that as long as you live here you’re gonna’ have to put up with your granddaddy and me telling you what you should do, and what you should not do—don’t you?”  He smiled and said “YES.”   Believe it or not, he hasn’t given us any trouble, and not until you become a grandmother will you be able to understand the “eternal and unique and unexplainable bond of love” that grandparents share with their grandchildren.  I must tell you that we feel like they are “our very own children.” 

The longer I live, the more I appreciate my mother.   Even now, though she went to be with the Lord in 2013, at age 99, I still ask myself, “If Mama were still alive, wonder what she would think about this or that?  I wish she were still around because she would have some good advice.  I valued the advice my mother had to offer, because I knew she had “experienced life” far longer than I had.  I still thank God for the godly mother He gave to me. 

May the Lord give wisdom to the doctors to be certain of your mother’s diagnosis and know how best to treat it.  And may He give you the ability to cast your care upon Him because He loves us all!

Love & prayers for you, your mom, your children 

Loretta

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P.S.  One grandson is here to visit us from Michigan this weekend, so I hope I can get back with you tomorrow with a few more helps, but for now I just couldn’t go to bed without telling you that I have read your letter and I understand your concerns completely.

loristory77 said:

thank you...

Wow Loretta, 99!  How lucky are you to have her all of those years?! After my mother had her hysterectomy she had 2 more surgeries.  First she had a gall bladder attack in 2010 and she had it removed.  Then she had a hernia and had mesh put in to close that up.  I just want this weekend to end so that I can get some answers.  It seems no one wants to do much testing on the weekends.  Would the PT/CT scan give more information than the tissue biopsy that is happening tomorrow?  Is there a benefit in doing both tests? I was under the impression that the tissue biopsy would give us all the answers we need to come up with a plan.

When the HIPEC treatment is adminiistered is it typically one treatment? After the HIPEC is there more chemotherapy treatments?  What is the recovery of the HIPEC like?  

Thanks again Loretta!

Lori H. 

 

 

Hello again Lori:

It’s been a long day and we had a family get-together that lasted late but never too long when family can get together.  However, I see you have asked other questions. 

You ask: “Is there a benefit in doing both tests? I was under the impression that the tissue biopsy would give us all the answers we need to come up with a plan.  Would the PT/CT scan give more information than the tissue biopsy that is happening tomorrow?”

Yes, the biopsy will confirm whether cancer is present or not.  But PET/CT scans are vital as well to assess the whole scope of cancer location.  There are many parts to accurately diagnosing a patient.    

You ask:  “When the HIPEC treatment is administered is it typically one treatment?  Now we must remember that the diagnosis has not been completely established yet, but HIPEC is a great advantage to those patients whom the surgeons feel will benefit by it.  And yes, the treatment is part of the Cytoreductive Surgery procedure.  But it is not specifically just for Peritoneal Cancer patients.  I have known Esophageal Cancer patients who have been able to have the HIPEC treatment.  The process will be explained by Dr. David Bartlett, my surgeon, in the videos from UPMC.  The info for the family house is listed here, although you said you plan to go to Sloan Kettering for a SECOND opinion.  Another lady here planned to go to UPMC, and so just for info for any others who may be needing CRS, that might want to consult UPMC, I’m leaving in the housing info.  Family members can stay along with the patient.  It is much cheaper than paying those expensive hotel bills.    

You ask:  “ After the HIPEC is there more chemotherapy treatments?  What is the recovery of the HIPEC like? ” 

I’m not able to give you a definitive answer as to whether or not there are more chemo treatments once a person has had HIPEC.  I suppose that would depend on whether the cancer metastasizes to some other organ in the body.  And I can’t tell you what the recovery is like when a person has had the HIPEC treatment.  I know what it’s like to recover from the Cytoreductive Surgery.  As for me, I had one chemo session prior to the CRS, and am now in the process of having my 4^th chemo session.  I’m having complications even now and I don’t intend to continue more chemo sessions after this.  But as for recovery from the HIPEC, it isn’t as invasive as “normal routine chemo regimens” because it only is administered to the abdominal cavity and is not circulated throughout the whole body.  That is a great advantage to HIPEC because it only treats the cancerous area in the abdomen, and doesn’t penetrate the entire body!  So to me, the recovery from the actual surgery will be what the patient will be concerned with.  Stats have proven that those who receive the HIPEC treatment have longer survival times. 

I hope that you have written down your questions and will ask the doctors who are going to be administering the tests for your mom. 

But as for now, this will serve as a mini-tutorial on HIPEC mainly.  But recovery time can only be determined after a diagnosis has been confirmed, and a total plan of treatment is known.  As to questions in your first letter, I simply have no more time now to go into them.  Immunotherapy is good for some people, and not for others.  It is very new and there are multiple clinical trials going on that utilize that procedure.  However, clinical trials are specific in this way.  You won’t know which clinical trial might be available until your mother’s workup is complete.  And at that point, there are always specific qualifications.  Patients desiring to enter one would have to meet certain qualifications as set out in the Clinical trial objective.  Trials go through 3 phases.  The object is to find a better way to treat a specific cancer than are currently approved by the FDA.  So they have an end point.  If the clinical trial treatment proves to not exceed current FDA protocols, then it will not be considered superior to what is already available  to patients.  That is my understanding.  Thus the name “TRIAL”.   

So I will certainly have to go for now.

Love & prayers

Loretta

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P.S.  Make these references a part of your research info.  The more you know, the more you will understand what the doctors are talking about.  And oh, just one more thing.  Did I give you the link to the audible pronunciation link so that you can know how to pronounce all those big words which are brand new to us, but “old” to the doctor’s normal lingo.  So without number it, here it is:  I’ve just keyed in “Peritoneal” and this is what comes up.  So you will want to make use of this link:

•  https://www.cancer.gov/publications/dictionaries/cancer-terms/search?contains=false&q=peritoneal

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1.      http://www.familyhouse.org/

Family House - 412.647.7777

Administrative Office5001 Baum Blvd Suite 545Pittsburgh, PA - 15213 United States

housing@familyhouse.org

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2.      http://www.upmccancercenter.com/cancer-care/surgical-oncology/koch-regional-cancer-therapy-center/doctors-staff

4.      https://www.youtube.com/watch?v=UeDDYt_5-Gw

Cancer Treatment: Heated Intraperitoneal Chemotherapy (HIPEC)

 Nucleus Medical Media – Feb. 6, 2014 - Hyperthermic intraperitoneal chemotherapy, or HIPEC, is a treatment option for patients with advanced cancers that have spread to the abdominal cavity or peritoneum.  First, the doctor performs an operation to remove all visible tumors from the abdominal cavity. Then, the HIPEC is administered, which is a heated chemotherapy treatment aimed at killing any remaining cancer cells that cannot be seen.  (3:50 minutes) animated video

5.       https://www.youtube.com/watch?v=ot3YAxpOLR0

HIPEC Shows Promise for Treatment of Abdominal Cancers

 Published on Apr 5, 2013 - David Bartlett, MD, vice chairman for surgical oncology and gastrointestinal services at UPMC, discusses HIPEC as an approach that may improve the long term survival of patients diagnosed with abdominal cancers when used in conjunction with other cancer therapies. (3.56 minutes)

6.      https://www.youtube.com/watch?v=OHK23AWoG0Q&t=116s

7.      https://www.youtube.com/watch?v=bdNtah1mpg4

8.      https://www.youtube.com/watch?v=6lqnl-3WP7Y

HIPEC Procedure - Hyperthermic Intraperitoneal Chemotherapy

9.      http://www.upmccancercenter.com/cancer-care/surgical-oncology/koch-regional-cancer-therapy-center/treatments/hipec?&gclid=COKrsOvtyNMCFV6BswodqugDQg

“Hyperthermic Intraperitoneal Chemoperfusion (HIPEC) Treatment

Many tumors too advanced for surgical removal remain confined to a single organ or region of the body. Hyperthermic intraperitoneal chemoperfusion (HIPEC) is a surgical technique that we use to treat these types of tumors.

What Can I Expect During Hyperthermic Intraperitoneal Chemoperfusion?

In HIPEC, our surgeons may first debulk, or partially remove, the tumor prior to treating.

• Afterwards, the surgeon makes two small incisions and inserts tubes:
• One to pump the heated chemotherapy solution into your body.
• One to circulate the fluid back to the heating equipment.
• Once the treatment begins, the temperature in the chest cavity rises to between 105 and 107.6 F (40.6 and 42 C).
• The chemotherapy solution circulates for several hours to kill the cancer cells.
• The pump is turned off to allow the treated region to cool to normal temperature.

10.  https://www.youtube.com/watch?v=bqJiyMEMamk

HIPEC Patient Education Video Series - Introduction

 HIPEC Treatment - Published on Sep 17, 2012 - Dr. David Bartlett discusses the HIPEC program at UPMC (2:00 minute video intro)

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11.  https://www.youtube.com/watch?v=VRfU-oOBNGU

Specialty Care Centers at UPMC Cancer Centers

12.  https://www.youtube.com/watch?v=mJ4rdhhboVs&t=185s

HIPEC Patient Education Video Series - Patient Selection

13.  https://www.youtube.com/watch?v=eiAu-LHQHoY&t=672s

14.  https://www.youtube.com/watch?v=MSeqsc-2WFM

HIPEC Patient Education Video Series - Cytoreductive Surgery

15.  https://www.youtube.com/watch?v=GCABswECFYg&t=250s

16.  https://www.youtube.com/watch?v=ATJ-2bLz14c&t=235s

HIPEC Patient Education Video Series – Anesthesia

17.  https://www.youtube.com/watch?v=NHNoeMxqnro

18.  https://www.youtube.com/watch?v=uI2GYjxM8_o

HIPEC Patient Education Video Series - Operating Room Nursing & Perfusion

19.  https://www.youtube.com/watch?v=J6DpWGEKQ3g

20.  https://www.youtube.com/watch?v=eiAu-LHQHoY

21.  https://www.youtube.com/watch?v=OHK23AWoG0Q

22.  https://www.youtube.com/watch?v=l65xOD7nPbc

23.  https://www.youtube.com/watch?v=UeDDYt_5-Gw

24.  http://www.hipec.com/

4:38 minute video explaining HIPEC treatment for Peritoneal Cancer

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26.  http://www.hipec.com/hipec/

Treatment Centers around the globe.

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

  28.  http://www.cancercenter.com/video/treatments-technology/chemo-intraperitoneal/

33 minute video with good explanations of Peritoneal Carcinomatosis

Tumor markers CEA – AC19-9 – CA-125

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29.  https://www.youtube.com/watch?v=Ju9vSyKYCS0

Minimally Invasive GI Surgery, Including HIPEC

UC San Diego Health

Published on Nov 7, 2014

SUBSCRIBE 5.7KSubscribe Subscribed Unsubscribe

30.  https://www.youtube.com/watch?v=cn6ogIc-TZk

Mayo Clinic

Published on Aug 3, 2015

SUBSCRIBE 69KSubscribe Subscribed Unsubscribe

31.  https://www.youtube.com/watch?v=MSeqsc-2WFM

HIPECTreatment

Published on Sep 17, 2012

SUBSCRIBE 89Subscribe Subscribed Unsubscribe

32.  https://www.youtube.com/watch?v=eiAu-LHQHoY

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33.  https://www.youtube.com/watch?v=bqJiyMEMamk

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34.   https://www.nebraskamed.com/cancer/peritoneal

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35.  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…”

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36.  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.”

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37.  https://www.youtube.com/watch?v=Izw3Nj9Y_Dk

Cancer Treatment: Heated Intraperitoneal Chemotherapy (HIPEC)

_______End of references most are related to University of Pittsburgh Medical Center because that is where I had my Cytoreductive Surgery on July 1, 2013.  Many references are videos.  This is not all of my files, but it will be over and above what you need to know about HIPEC treatment._______

Hi Lori,  sorry that your mom is going through this,  I have been in treatment for 3 years now,  and  managed to alsoi beat Primary Brreast Cancer at the same time.  I would Echo the comments from NOHAIRDONTCARE61,  Talk to your doctors.  you want to be sure you and your mother are comfortable with them,and that they will answer all your questions.  I have been blessed with an amazing team of encouraging, positive doctors.  If you aren't happy with them,  then yes, get another opinion and talk to other doctors.  Every one truly is different,  there is so much information out on the internet that it can be overwhelming.  Even though I am in my 3rd round of Chemotherapy,  I am doing well,  and while there is fatigue,  I am so thankful to be alive, having even more time with my family.  I was 59 when diagnosed,  will turn 62 next month.  you can send me a message if you want some tips to help with chemo and side effects, or just encouragment.  Wishing your mom well.

Hi Lori:

How is your Mom doing?  I was diagnosed August 2017 with peritoneal cancer and I am in a clinical trail at Kettering Cancer Care in Kettering Oh.

I had fluid around my lungs and around my stomach but I never had any pain.  I had 3 chemo treatments, exploratory surgery and then 3 more chemo treatments.  Now I am on a maintenance treatment either getting the clincial trail drug or a plesobo.

Have other woman contacted you stating they have peritoneal cancer and how are they doing.

Pam

NOHAIRDONTCARE61 said:

Lori H.,

Hi Lori,

I am so sorry to hear about your mother. I understand the need to ask others for suggestions on questions to ask the doctor. But I strongly encourage you to direct your questions to your mothers doctor and other healthcare team and not public a forum as there are many variables involved and although everyone here has good intentions, nobody is as informed of your mothers specific issues as her healthcare team. What was right for me may not be appropriate for your mother. I was diagnosed with PPC Stage 3C in August of 2017. I had many well meaning people giving me advice. Your mom is scared to death and needs to be 100% confident in her health care team, shame on anyone that knowingly contradicts or undermines her doctors (I had people stunned I was going to have surgery followed by chemo without giving apple cider vinegar first, or some treatment in Mexico, and OMG how could I even consider taking pills!). I had debulking surgery preformed removing my omentom, ovaries and Fallopian tubes (partial hysterectomy preformed years ago). Unfortnately, all of my tumors were inoperable. I went through 6 rounds of chemo, which by the grace of God was pretty easy. I am currently in remission. This cancer is sneaky and the symptoms mimic other issues and is difficult to catch early. Love your mom, be there for her. I wish your mom, you and your family the best of luck.

My diagnosis is the same as yours and I was diagnosed in August of 2017 as well.  I completed my chemo after debulking the first of April.  I just wondered if you are still in remission.  I am now experiencing new symptoms of bloating etc. and am afraid my cancer is now active once again.