Trying to understand what's going on

Mastermind

My mother (64 years old, non-smoker, non-drinker) has not yet been diagnosed but it is presumed to be ovarian cancer stage III. In the beginning of the year she had a rash on her thigh and it was noted as being a UTI and got treated for it. After two months she began to lose weight and was tested for H.Pylori and it came back positive. She was placed on antibiotics for 2 weeks, we waited another week. She continued to lose weight, so the doctor ordered for a biopsy to be done within her stomach.

The oncologist took a CT scan right away and planned to do the biopsy the next day. The CT scan showed fluid/mass in between her pancreas, liver and gallbladder. We were told the chances of it being cancerous was highly likely (5/29). Kaiser scheduled a nuclear endoscopy on the 6/19 to obtain a biopsy, it was a difficult position thus the higher end endoscopy procedure was necessary.

We then had a meeting with a gynecologic oncologist 6/3 who talked to us further on the findings of the CT scan and tumor markers. Cysts were present on both ovaries, tumor markers were CA-125 - 66, CA19-9 - 3,000, CEA - 3.3. She stated that she was going more toowards this as being a GI, she set up a transvaginal ultrasound and a PET scan. The ultrasound was conducted on 6/4 and the PET on 6/12. Her findings were inconclusive on the ultrasound and stated she felt the ovaries were in good condition and was moving towards it being GI. In the meantime we have family that are radiologist and a family friend that is a lead in GI oncology at MD Anderson in Houston. They claimed they saw nothing out of the norm and her blood tests for liver functions and every test that is capable were in good standing. The only thing they did see were gallstones and a little inflammation in the bile duct but nothing to alarm about.

After the PET scan was conducted my mom had abdomnal pain 6/14 and we rushed her to the emergency room. They took x-rays and CT scans and saw multiple tumors in the omentum and tumor of 5 cm in the small bowel mesentery and saw inflammation in the small bowel calling it an obstruction. We learned of the results from the PET scan as coinciding with the CT scans and had lymphnodes that had lit up as well. Kaiser took biopsy samples from the abdomen to find out the origination, but it was only determined to be adenocarcinoma and the origination was not found. We stayed in the hospital until 6/19 and had TPN installed to help out in getting calories to increase her weight and get her strength up (lost 30 lbs at this point).

In the meantime a biopsy was done for the first mass that was identified on the first CT scan. The doctor took a sample and claimed he also saw nothing out of the norm through the GI and had a sense this was coming from the ovaries. During our stay many doctors had told us they felt it was ovarian, but our gynecologic oncologist was leaning towards it being GI. At this point we became scheduled with Kaiser Los Angeles and we were moving on as if it was ovarian. The lead doctor (Dr. Lentz) is an amazing doctor and I would highly refer to him if you belong within the Kaiser system, he connects with his patients and will readily speak to other doctors within the family to discuss further in detail of what is happening. He is very hopeful of the response and treatment plan for my mom, he wants to do chemotherapy and wants to help her build up her strength for surgery. Many doctors were claiming the cancer to be stage IV unoperable, Dr. Lentz had no doubt it being Stage III and stated with how the cancer has moved and progress he feels it is ovarian but wants to take a larger biopsy sample within the abdomen to verify the origination. The reason for another biopsy is because the biopsy of the original mass speculated to be cancerous came back negative and not cancerous.

On 7/2, we started chemotherapy a Taxol and Carboplatin regiment (3 weeks for 1 cycle). After the second treatment 7/9, my mom felt stronger pain in her abdomen so we rushed her to the emergency room. They took a CT scan and saw no change (possible smaller size) on the tumors compared to a CT that was done on 6/14, but this time they saw no inflammation / blockage in the small intestine. Her lymphnodes in her arm pit have also gone away at this point, and her white blood cell count for neutrophils has also come back from being very high to normal levels. Even with chemotherapy her other white blood cell counts have been very stable in the normal range and all of her other blood tests have been coming back normal as well, except for the liver function test due to TPN, but have come down to normal as well, because she has started to eat and drink again. It looks like she is going through some pains from the chemotherapy now but has morphine to control the pain and reglan for nausea, antacid seems like it also helps as well. We are now set to have the next biopsy done on 7/28 and hopefully will have more answers then questions at that point.

My question to the people here is, do you believe the inflammation / blockage within the intestines was related to cancer or an infection (lymph nodes have gone away too)? Also, after almost 4 weeks between CT scans and two treatments is it a good sign that the tumors so far have held to their size.

We will be getting CA-125 results as we have had two already, 66 (5/29) and 77 (6/25). 

 

Thank you in advance for the suggestions and responses.

Kaleena

So sorry that you and your

So sorry that you and your mom have to go through this.  It is so frustrating when you don't get answers and very scary too.  If your mom is prone to having soft tissue masses, it can be very difficult along with inflammation and if she has scarring on top of that.....well just down right frustrating.

Biopsies are good but they can miss stuff - especially on soft tissue masses.   Because they could miss part of the mass that could be cancerous.   Like in my case, I currently have a 6 cm mass and even though it is part positive on a PET scan, the part they biopsied (of course not the PET part) came back negative because that was the only area that they were able to get to.  The mass has also surrounded my left ureter and my HDR brachytherapy caused scarring and blockage to that same ureter to the point that I require a ureter stent.

Back in 2009 when they believed I had a recurrence for a different soft tissue mass, they had biopsied that one and it came back positive.  However, when they surgically removed it it tested negative.  Although they did test a lymph node which had microscopic cells in it.

So you see, it is very difficult and frustrating to say the least.  It is like you are on a holding pattern.   But I will tell you that I completely had to go to another state to get a 4th opinion for the recurrence in 2009.   They originally told me that I needed to start chemo right away to help shrink it because it was probably inoperable.   Well after a few other doctors, the one who biopsied it then said it was inoperable, I went completely out of state and they removed the negative soft tissue mass.

By the way, my original diagnosis was Stage 3a, Grade 2 endometrial adenocarcinoma.(2005)   However, they could not find where it originated and since it was in my uterus, cervix and my left ovary, they treated me as ovarian.

 

Regarding your question, scarring is probably the greatest thing when it comes to blockages, etc.  You don't say whether or not your mom had a hysterectomy or removal of ovaries, etc.

 

I hope you find answers for your mom.

Kathy

Mastermind

Kaleena said:

So sorry that you and your

So sorry that you and your mom have to go through this.  It is so frustrating when you don't get answers and very scary too.  If your mom is prone to having soft tissue masses, it can be very difficult along with inflammation and if she has scarring on top of that.....well just down right frustrating.

Biopsies are good but they can miss stuff - especially on soft tissue masses.   Because they could miss part of the mass that could be cancerous.   Like in my case, I currently have a 6 cm mass and even though it is part positive on a PET scan, the part they biopsied (of course not the PET part) came back negative because that was the only area that they were able to get to.  The mass has also surrounded my left ureter and my HDR brachytherapy caused scarring and blockage to that same ureter to the point that I require a ureter stent.

Back in 2009 when they believed I had a recurrence for a different soft tissue mass, they had biopsied that one and it came back positive.  However, when they surgically removed it it tested negative.  Although they did test a lymph node which had microscopic cells in it.

So you see, it is very difficult and frustrating to say the least.  It is like you are on a holding pattern.   But I will tell you that I completely had to go to another state to get a 4th opinion for the recurrence in 2009.   They originally told me that I needed to start chemo right away to help shrink it because it was probably inoperable.   Well after a few other doctors, the one who biopsied it then said it was inoperable, I went completely out of state and they removed the negative soft tissue mass.

By the way, my original diagnosis was Stage 3a, Grade 2 endometrial adenocarcinoma.(2005)   However, they could not find where it originated and since it was in my uterus, cervix and my left ovary, they treated me as ovarian.

 

Regarding your question, scarring is probably the greatest thing when it comes to blockages, etc.  You don't say whether or not your mom had a hysterectomy or removal of ovaries, etc.

 

I hope you find answers for your mom.

Kathy

thank you Kathy

Thank you for your reply Kathy and your story gives me a lot more hope. I see many similiarities within my mom's case in yours.I don't believe there is evidence of scarring but I will verify this with the doctor this up and coming Thursday.

She has not had a hysterectomy or removal of the ovaries, no surgical procedures at all at this time. The plan is to do the surgery after 3 cycles, I believe we will most likely find out most about this cancer after surgery, as I think the upcoming biopsy will eiter claim again that it is adenocarcinoma (without knowledge of true orignation) or comes back negative like the other biopsies (Stomach, Cervix, and mass between the liver, gallbladder, and pancreas).

Thank you again for your reply it helps out a lot getting these things out in the open and being heard by people that have been there and done that. It's not a club that I would have thought my mom would ever join but we are here and hopefully can be a success / inspiritation to others like yourself.

Zee

abrub

My cancer was found on my ovary, but was GI in origin

Mine was appendix cancer.  The chemos are different for GI/colorectal cancers than for ovarian.  Let me know if I can be of help.

Mastermind

abrub said:

My cancer was found on my ovary, but was GI in origin

Mine was appendix cancer.  The chemos are different for GI/colorectal cancers than for ovarian.  Let me know if I can be of help.

thank you abrub

thank you for the response abrub! I certainly look forward to obtaining more answers than questions from the biopsy being done on 7/28. I wonder if it is GI related, will carboplatin and taxol be any good at this point until they figure out the true origination? It seems like at least we have been able to bring the neutrophils value down to a 3/1 ratio compared to the lymphocytes which was at a high of 9/1. It also looks like the tumors have been stalled as well (hopeful to shrinking).