Confused: PPC or Ovarian?

leesag

Hi all,

You may remember me from the recent posting about the CT scan. I saw my GYN today and now I'm even more confused. He tells me that, yes, I have cancer, but he doesn't think the ovaries are the primary site. He seems to think it's Peritoneal Cancer. He presented that as though it were a positive, but the little bit of reading I've done has me feeling a bit confused and disheartened. (I know, a little knowledge is a dangerous thing). So I've come to you, who've always brought me hope in the past. Many of the threads indicate that these two diseases are, in fact, the same, only starting in a different part of the body. Similar to Breast cancer--we don't have Right Breast Cancer and Left Breast Cancer, just Breast Cancer. Is this an accurate, albeit simplistic, comparison?

My doctor also told me that he currently sees a patient who was diagnosed with PPC 20 years ago and still going strong. THAT seems very hopeful to me, as I've promised my husband that he's stuck with me for at least the next 25!

Any information is welcome!



Leesa

Hissy_Fitz

I think they are treated the same
Peritoneal Cancer is rare. Women who have had a complete hysterectomy and develop ovarian cancer anyway actually have Peritoneal Cancer, I think.

The treatments are often the same, but I have read that some docs use radiation on Peri whereas they do not with OVC.

Did you have vaginal bleeding? That is the only symptom I have seen that occurs with Peri and not OVC.

nancy591

stage?
Did he give you an indication as to what stage you may be? I hope you will see a gyn oncologist!

leesag

Hissy_Fitz said:

I think they are treated the same
Peritoneal Cancer is rare. Women who have had a complete hysterectomy and develop ovarian cancer anyway actually have Peritoneal Cancer, I think.

The treatments are often the same, but I have read that some docs use radiation on Peri whereas they do not with OVC.

Did you have vaginal bleeding? That is the only symptom I have seen that occurs with Peri and not OVC.

That's why I'm confused!
I still have everything female and no abnormal bleeding? My gyn said my ovaries only have small nodules on them, which makes him believe this is not primary ovarian cancer. The CT showed nodules throughout my peritoneal wall, but only in the pelvis, not higher (according to him). I see a Gyn Onc on Wednesday. He comes highly recommended in the Baltimore Area. I'm so confused and was so hoping for good news. It almost seemed as though my gyn thought THIS was good news?

No word on staging, that won't happen until surgery. In the meantime, my Primary care doc prescribed xanax, so I'm calmer and I pray.

nancy591

leesag said:

That's why I'm confused!
I still have everything female and no abnormal bleeding? My gyn said my ovaries only have small nodules on them, which makes him believe this is not primary ovarian cancer. The CT showed nodules throughout my peritoneal wall, but only in the pelvis, not higher (according to him). I see a Gyn Onc on Wednesday. He comes highly recommended in the Baltimore Area. I'm so confused and was so hoping for good news. It almost seemed as though my gyn thought THIS was good news?

No word on staging, that won't happen until surgery. In the meantime, my Primary care doc prescribed xanax, so I'm calmer and I pray.

Good luck
Good luck on Wednesday. let us know what happens.

cancer survivor x 4

leesag said:

That's why I'm confused!
I still have everything female and no abnormal bleeding? My gyn said my ovaries only have small nodules on them, which makes him believe this is not primary ovarian cancer. The CT showed nodules throughout my peritoneal wall, but only in the pelvis, not higher (according to him). I see a Gyn Onc on Wednesday. He comes highly recommended in the Baltimore Area. I'm so confused and was so hoping for good news. It almost seemed as though my gyn thought THIS was good news?

No word on staging, that won't happen until surgery. In the meantime, my Primary care doc prescribed xanax, so I'm calmer and I pray.

GYN/ONCOLOGIST
Hello,
I noticed you are seeing someone highly recommended in the Baltimore area. I also went to Baltimore. Is it Dr Neil Rosenshein? He has the best hands you want working on you. He was voted one of the top 10 OB/GYN Oncologists in the nation and #1 on the east coast. I was just curious. If it is him, let me know. I will tell you about him. Paula

kayandok

They really don't know until they open
you up and do a biopsy, unfortunately. My cysts were very small but I had OvCa 3C. Some people have huge grapefruit or larger cysts and are at stage 1 or 2 OvCa. I don't know much about peritoneal, other than it is pretty rare. I think you are right, though, it is treated the same.
I see you are seeing a onco/gyn. He will be able to give you more info, I'm sure.
Take care,
Kathleen:)

leesag

cancer survivor x 4 said:

GYN/ONCOLOGIST
Hello,
I noticed you are seeing someone highly recommended in the Baltimore area. I also went to Baltimore. Is it Dr Neil Rosenshein? He has the best hands you want working on you. He was voted one of the top 10 OB/GYN Oncologists in the nation and #1 on the east coast. I was just curious. If it is him, let me know. I will tell you about him. Paula

Gyn/Oncologist
Hi Paula,

Dr. Rosenshein is no longer at my local hospital, but I'm seeing Dr. Dwight Im who is a partner in Rosenshein's medical group at Mercy. My sister works at the local hospital (which also has a good rep for cancer care), and he was the first choice of everyone she spoke with, and when I met with my GYN he had already scheduled an early morning appointment for me on Wednesday.

Here's a question that I asked my GYN: How long will the hysterectomy/cytoreduction surgery keep me in the hospital and what is the recovery time? He told me that I would have a 2 day hospital stay, does this make sense? Everything I've read here seems to indicate a much longer hospital stay?

My husband is being incredibly supportive and we have decided that we must have at least 25 years together, so that's my goal, no matter what kind of cancer it turns out to be!

Leesa

leesag

nancy591 said:

stage?
Did he give you an indication as to what stage you may be? I hope you will see a gyn oncologist!

Stage
Nancy, no idea of stage. He says that the ovaries have very small growths and the peritoneal growths are limited to the pelvic area with no organ involvement (based on the ct), so I have my fingers crossed and constant prayer running through my heart. He presented this as positive information, so I'm taking him at face value!

Hissy_Fitz

leesag said:

Gyn/Oncologist
Hi Paula,

Dr. Rosenshein is no longer at my local hospital, but I'm seeing Dr. Dwight Im who is a partner in Rosenshein's medical group at Mercy. My sister works at the local hospital (which also has a good rep for cancer care), and he was the first choice of everyone she spoke with, and when I met with my GYN he had already scheduled an early morning appointment for me on Wednesday.

Here's a question that I asked my GYN: How long will the hysterectomy/cytoreduction surgery keep me in the hospital and what is the recovery time? He told me that I would have a 2 day hospital stay, does this make sense? Everything I've read here seems to indicate a much longer hospital stay?

My husband is being incredibly supportive and we have decided that we must have at least 25 years together, so that's my goal, no matter what kind of cancer it turns out to be!

Leesa

That is best case scenario, I think.....
I went in thru the ER on 9/25/09 with a bowel obstruction and was released on 10/13/09. My cytoreduction included the removal of both ovaries and tubes (large tumor on the left ovary), my omentum, and a portion of my intestine (due to a smaller, secondary tumor). I was originally expecting to check in early on the morning of my scheduled surgery (9/29) and stay 4-5 days.

Sometimes stuff happens. But complications from surgery do not impact your long-term prognosis.

Years ago I had an A&P repair and a vaginal (partial) hysterectomy. Not a single complication. They kept me 6 nights, all told. Two days isn't very long for the type of surgery you are having.

I cut and pasted some info for you below:

Cytoreduction (debulking) surgery is often long and complicated and is associated with a high rate of post-operative complications. Parts of the large and small bowel along with organs or parts of organs in the abdomen that are cancerous may need to be removed during this surgery.

leesag

kayandok said:

They really don't know until they open
you up and do a biopsy, unfortunately. My cysts were very small but I had OvCa 3C. Some people have huge grapefruit or larger cysts and are at stage 1 or 2 OvCa. I don't know much about peritoneal, other than it is pretty rare. I think you are right, though, it is treated the same.
I see you are seeing a onco/gyn. He will be able to give you more info, I'm sure.
Take care,
Kathleen:)

Can I stay here?
If it's peritoneal, do ya'll mind if I continue to hang out here? There's no peritoneal subtopic and I feel like I know so many of you already!

kayandok

leesag said:

Can I stay here?
If it's peritoneal, do ya'll mind if I continue to hang out here? There's no peritoneal subtopic and I feel like I know so many of you already!

Of-course!!!
kathleen:)

nancy591

leesag said:

Can I stay here?
If it's peritoneal, do ya'll mind if I continue to hang out here? There's no peritoneal subtopic and I feel like I know so many of you already!

YES!
Good luck on Wednesday!!! I know its very scary and a lot of new information. Like Hissy Fitz, I went in through the ER with a bowel obstruction and was in the hospital about 3 wks but I had a temporary illeostomy placed. If it seems to be contained to your peritoneal area that would be great! Have you had any bowel symptoms. I lady at my job was recently diagnosed with PPC and is now back at work and still undergoing chemo treatments. Let us know what happens!

jtotten1

leesag said:

Can I stay here?
If it's peritoneal, do ya'll mind if I continue to hang out here? There's no peritoneal subtopic and I feel like I know so many of you already!

2-Day Stay for the Surgery
Hey there - I went in for my "de-bulking" hysterectomy on a Friday morning (8/8/08). They had me up & walking around (although not quickly!!) on Saturday (26 hours after my operation) and I went home Sunday afternoon.

At the time, I didn't feel ready to go home, but they assured me that all the hospital can do is pain management, and they felt I could do that at home.

Barring any complications, two or three days is what I understand to be the norm. It still sounds too quick for me!!

An unfortunate "Welcome" to you.
Keep your chin up & stay strong, girl - you're not alone!
Jayme

saundra

Stage IV
Depends on what they find during surgery. They had to remove my spleen (unexpected because the cancer was all over it). Also depends on how soon you get the bowels, urine, etc going.... I stayed 7 days but I am 70. I did not have bowel involvement but did have three liver tumors so I was Stage IV diagnosed with the CT because of that. It is great that you have no other organ involvement and you will have a lower stage than IV for sure.

Of course, you can come here. We have other peritoneal and the treatment is the same as far as we can tell. I have a friend here in my town that has been fighting Stage IV for 6 years of peritoneal and we have had pretty much the same treatment, surgery and chemo wise. I go to Texas Oncology and she to M.D. Anderson in Houston.

I know this is a shock to you and you will soon adjust but in the meantime, keep on checking in. We will pray for you on surgery day if you let us know the date. You might want to consider keeping a journal because a year from now the memory will go dim on what happened. My husband kept a journal while I was in the hospital....I was on morphine and hardly remember anything. FUZZY I still journal most days. He also posted to the girls here in the discussion group for me during that time with updates.

The anti depressant is good for most of us. I am still on mine after three years and have no intention of dropping it. (((HUGS))) Saundra

Tina Brown

leesag said:

Can I stay here?
If it's peritoneal, do ya'll mind if I continue to hang out here? There's no peritoneal subtopic and I feel like I know so many of you already!

Hi Leesa
I've just been reading your messages. I have PPC, was diagnosed in Nov 09. It is totally different from ovarian cancer, its just the tissues are the same type so they respond to the same chemo. It is very rare. It would be nice to chat to you because I am also finding it difficult to find other ladies with this cancer.

Keep in touch with how you are. Tina xxxx