Stage 3C solely based on Lymph Nodes

dolphinlova · January 2018

So, I guess it started in March 2016. At age 50, my Mom started having awful periods, very painful and heavier than ever before. I work in OBGYN, so I thought this was just peri-menopausal symptoms, as did my provider. So an ultrasound was done, everything is normal besides her uterus is slightly long and her left ovary has multiple follicles. She is considering an ablation but the doctor does not think she is a good candidate because of the size of her uterus. So she decides to hold out to see if the awful periods just stop their own. They Don’t. Come October 2016, periods are worse than before, she wants something done. They decide to go with an IUD, so that is inserted the same day. Everything is awesome for a year. Periods are nonexistent, cramping has stopped, she loves the IUD.

Come 06/2017, she starts having pain and swelling in her right ankle. PCP thinks it’s Gout. Gives her medicine for that which does nothing. She calls her back and says she is no better. I asked for her to get an doppler of her leg to check for DVT. Her PCP is not convinced. PCP says let’s order an X-ray to check for injury (there was no injury) I talk to Dr. S who is worried and says its no issue to order one, so she did. Low and Behold she has a DVT. Mom gets put on Xaralto for 3 months, the clot resolves fairly quickly.

Fast Forward to October 19th, 2017, Im leaving for work and she's complaining of lower abdominal pain. First thing I think of is something is wrong with the IUD, So I asked her to come in ASAP for an ultrasound to make sure it’s still in the right place. So we get her in, ultrasound first then seeing the doctor. Ultrasound shows normal left ovary BUT cannot see right ovary because of large complex mass measuring at least 15cm, with blood flow. So now I’, worried, but she has a cruise scheduled the very next day to Mexico. So Doctor S. says go ahead and go, we will take care of everything when you get back. At first Doctor S. thinks its just a large complex cyst (Benign), but since it is so large it needs to come out. Doctor S. said since her periods are bad already, let’s do a hysterectomy with right oophorectomy. But with the cyst being so large, she will have to make a large vertical incision.

So mom gets back from her trip, following day Doctor S. wants some blood work in anticipation for surgery. Also, mom was complaining of pain in her left leg now after the long car ride from Mexico. So another doppler was ordered. She ended up having 2 DVT’s in that leg. She was kept in the hospital to have an IVC filter, which prevents DVT’s traveling to the lungs. (She ended up already having multiple Pulmonary Embolisms at the time that wasn't known.) She Orders a CBC, CMP, and CA 125. Everything came back fine EXCEPT CA 125 was 2939, which is supposed to be 35 and below. Dr. S still doesn’t seem too worried, she thinks it is a Low malignant potential tumor. So she consults with one of her best oncology colleagues, which is Dr. Murray. Dr. Murray seems actually very worried, with the size of the mass, her very high CA 125, and with recurrent DVT’s. Now Dr. Murray is doing the surgery instead of Dr. S.

We meet with Dr. Murray, she tells us straight up she thinks this is Ovarian Cancer. So now we have to wait a little over one month for surgery because Dr. Murray is worried about the blood clots. Come December 1st, surgery lasts for about 4-5 hours. She did a Hysterectomy w/BSO, appendectomy and omenectomy. Took multiple biopsies from everywhere, and ended up taking 15 lymph nodes. We are told it is cancer, but that it looks to be stage 1C. The tumor was not really adhered to anything at all, there was fluid from part of the tumor rupturing.

About 1 week later we have her first post op, where she tells us she is now stage 3C. There is cancer in 2 lower lymph nodes and well as 1 along the aorta. Literally EVERYTHING else is negative for cancer. Uterus, left ovary, appendix, pelvic washings, all biopsies. I’ve never heard of a story like this, I’ve always seen stage 3C where there are tumors everywhere in the abdomen. We were expecting good ( considering) news and then it’s just awful. She will start chemo tomorrow, January 11th. Chemo will be 6 cycles of Carboplatin and Taxotere. I know she is in good hands with her Gynecologic Oncology doctor but I am absolutely terrified. I just want to hear stories, any helpful advice.

Soup52 · January 2018

Hi, I’m from the uterine

Hi, I’m from the uterine cancer group. I was diagnosed in October 2015 3C With cancer also in both ovaries and 3 lymph nodes. I had robotic hysterectomy, internal and external radiation, and 6 rounds of carbo/taxol chemo. I was clear after all treatments and remain so. Yes, chemo isn’t fun but it’s doable. It isn’t like it’s portrayed in movies. Lots of meds are given to help with nausea. Prayers for you, but I believe you can do this:)

dolphinlova · January 2018

Soup52 said:
Hi, I’m from the uterine
Hi, I’m from the uterine cancer group. I was diagnosed in October 2015 3C With cancer also in both ovaries and 3 lymph nodes. I had robotic hysterectomy, internal and external radiation, and 6 rounds of carbo/taxol chemo. I was clear after all treatments and remain so. Yes, chemo isn’t fun but it’s doable. It isn’t like it’s portrayed in movies. Lots of meds are given to help with nausea. Prayers for you, but I believe you can do this:)

Thanks

Thank you so much!

LorettaMarshall · January 2018

Dolphinlova~Brief story re my Stage IV OC that may B informative

Hello “Dolphinlova”

Thanks for being descriptive about your mom’s cancer diagnosis.

My own experience is that I was having heavy periods at age 36 and since I was through with childbearing—3 rowdy rambunctious boys—rightfully so—my gynecologist said I could have a hysterectomy. And so I did and was very happy to have had it done. There was only one kind of hysterectomy surgery almost 40 years ago, and that was a nice big abdominal slice and a minimum of 6-weeks bedrest for recovery. There was no repercussions. I didn’t suffer with unbearable hormonal changes nor did I “lose my mind.” I was really happy to know that I wouldn’t be expecting another child during what is usually described as “a woman’s mid-life crisis.” And a word about that—it’s only that by the age of 40 one begins to reassess their goings and comings and often decides that “if I’m gonna’ do this or that”, I’d better do it while I have the energy and before I get “old!” Okay moving right along—my husband and didn’t take any exotic trips but life was and still is good—all things considered.

You see we’ve survived Esophageal Cancer for my husband, and that was a pure blessing. Little did I know that in 2012, even after my hysterectomy at age 36, that I would be diagnosed with Stage IV Ovarian Cancer right out of the gate. There was no “warning” period prior to the sudden shock of learning that I had cancer. There was one bit of groin pain one weekend that was unusual. Having always been a high-energy healthy hardworking woman, when looking back I really did take my good health for granted. And probably many of us do until ill health comes calling.

Hard for me to make a long story short, but I did have a SECOND opinion at the University of Pittsburgh Medical Center in December of 2012, where my husband was previously treated for Esophageal Cancer, Stage III, back in 2003. There exploratory surgery and a PET/CT scan revealed cancer in both my ovaries, as well as in the Peritoneal cavity that was previously found here by CT scan at Sentara Leigh in Norfolk, VA in November of 2012.

As a result, I first had pre-op chemotherapy treatments of Carboplatin/Paclitaxel (Taxol) for 6 treatments (one every 3 weeks). Incidentally, my CA-125 count was in the mid-300 range and never reached the 1000 mark as some do, yet it is just as serious.

After the first cycle of chemo, I then had Cytoreductive Surgery (CRS), never meant to be curative, but to remove possible organs to which the cancer would most likely continue to spread. That would include an omentectomy, as well as removal of both ovaries, the fallopian tubes, gallbladder, spleen and resectioning of my intestines. I got a chuckle when one lady wrote to say she had had her “momentum” removed. That’s for sure. I didn’t even know I had such a thing, but now I know it is a “rich fertile covering of fatty tissue—a nice place for cancers to grow.” (See definition of omentum below- reference 6) So when my “omentum” was removed, it certainly did affect my “momentum.”

Now I say all that to say this, as I wrote to “Trailrunner” yesterday, https://csn.cancer.org/comment/1615051#comment-1615051

EVERYTHING NEEDS TO COME OUT when a hysterectomy is performed because OC can occur even after the ovaries have been removed. If I’m reading your letter correctly, your mother still has one of her ovaries left. I can also see the wisdom of the appendectomy because when one’s appendix ruptures, it can set up a cancerous condition that if left undetected and unattended can develop into Appendiceal or Peritoneal Cancer. When I had my CT scan here in November there were multiple tumors floating all around in my Peritoneal fluid in my abdominal cavity. Like I said, when I had my SECOND opinion 3 weeks later, it was discovered that both ovaries were infiltrated with the cancer as well. So that meant most likely that the ovaries were the “primary source”, even though it is now believed that the primary source of my ovarian cancer actually began in my fallopian tubes. That’s why my gynecologist says he no longer “ties the tubes”, he removes them. However, as I’ve said before, no matter whether it is Peritoneal or Ovarian, they are treated in the same fashion as far as initial chemotherapy is concerned.

So for anyone else that may read this letter, if you know that they are anticipating a hysterectomy, please tell them to “take everything out.” Removing my uterus at age 36 stopped the heavy bleeding, but it didn’t stop the Ovarian cancer almost 40 years later. It’s no time to “try to save something” because you feel like less of a woman—it’s time to think about preserving what quality of life one has left.

So this is just my story and perhaps it will be beneficial to anyone reading this, especially if they are anticipating a hysterectomy. Let’s hope your young mother’s treatments will be totally successful and that there will be no further metastasis. Below my name are a few references that might be helpful for her along the way. It is to her advantage to have you in the medical field and close to such caring doctors. Wishing her all the best, and you as well. The “older” we get, the more we appreciate our mothers. I can remember as a child at the age of 12, how I hated to do the supper dishes. Oh sure Mama had cooked the meal, cleaned the house, made many of our clothes and took care of us six children—but still—me having to wash the dishes after supper was a major workload. Now I look back and say to myself, “Oh if I only had to do the supper dishes.” It is true that woman’s work is never done! Some things never change. But now, I’m thankful to be able to still cook and clean house, although it requires my husband’s help. And I thank God that my husband is still around to help. So enjoy your mother, encourage her and let her know you’re with her all the way, and that you will “keep up with all things medical that she needs to know about!”

Wishing for your mom a successful chemo treatment regimen and complete remission,

Love Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer, Stage IV) Presently undergoing 4 in a series of Carboplatin/Paclitaxel (Taxol) regimen in the hopes that it will “knock” back the spread of my cancer.

_______________________________________________________

1. http://www.chemocare.com/chemotherapy/drug-info/carboplatin.aspx

2. http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

3. http://csn.cancer.org/node/301646 - This is a letter I wrote to “Brian” whose mom was going to begin chemotherapy. There are things in this letter that should help your mom as well. (“BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”)

4. http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/stages-grades

5. http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/stages-grades/stage-3

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

“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.”

7. http://news.cancerconnect.com/stage-iii-ovarian-cancer/

“…Overview

Patients diagnosed with stage III ovarian cancer have cancer that has spread from the ovaries and pelvic organs into the upper abdomen or lymph nodes.

Stage III ovarian cancer has not spread to sites outside the abdomen or inside the liver. The following is a general overview of the diagnosis and treatment of ovarian cancer. Each person with ovarian cancer is different, and the specific characteristics of your condition will determine how it is managed. The information on this Web site is intended to help educate you about treatment options and to facilitate a shared decision-making process with your treating physician…”

________________________End of references______________

dolphinlova · January 2018

LorettaMarshall said:
Dolphinlova~Brief story re my Stage IV OC that may B informative
Hello “Dolphinlova”

Thanks for being descriptive about your mom’s cancer diagnosis.

My own experience is that I was having heavy periods at age 36 and since I was through with childbearing—3 rowdy rambunctious boys—rightfully so—my gynecologist said I could have a hysterectomy. And so I did and was very happy to have had it done. There was only one kind of hysterectomy surgery almost 40 years ago, and that was a nice big abdominal slice and a minimum of 6-weeks bedrest for recovery. There was no repercussions. I didn’t suffer with unbearable hormonal changes nor did I “lose my mind.” I was really happy to know that I wouldn’t be expecting another child during what is usually described as “a woman’s mid-life crisis.” And a word about that—it’s only that by the age of 40 one begins to reassess their goings and comings and often decides that “if I’m gonna’ do this or that”, I’d better do it while I have the energy and before I get “old!” Okay moving right along—my husband and didn’t take any exotic trips but life was and still is good—all things considered.

You see we’ve survived Esophageal Cancer for my husband, and that was a pure blessing. Little did I know that in 2012, even after my hysterectomy at age 36, that I would be diagnosed with Stage IV Ovarian Cancer right out of the gate. There was no “warning” period prior to the sudden shock of learning that I had cancer. There was one bit of groin pain one weekend that was unusual. Having always been a high-energy healthy hardworking woman, when looking back I really did take my good health for granted. And probably many of us do until ill health comes calling.

Hard for me to make a long story short, but I did have a SECOND opinion at the University of Pittsburgh Medical Center in December of 2012, where my husband was previously treated for Esophageal Cancer, Stage III, back in 2003. There exploratory surgery and a PET/CT scan revealed cancer in both my ovaries, as well as in the Peritoneal cavity that was previously found here by CT scan at Sentara Leigh in Norfolk, VA in November of 2012.

As a result, I first had pre-op chemotherapy treatments of Carboplatin/Paclitaxel (Taxol) for 6 treatments (one every 3 weeks). Incidentally, my CA-125 count was in the mid-300 range and never reached the 1000 mark as some do, yet it is just as serious.

After the first cycle of chemo, I then had Cytoreductive Surgery (CRS), never meant to be curative, but to remove possible organs to which the cancer would most likely continue to spread. That would include an omentectomy, as well as removal of both ovaries, the fallopian tubes, gallbladder, spleen and resectioning of my intestines. I got a chuckle when one lady wrote to say she had had her “momentum” removed. That’s for sure. I didn’t even know I had such a thing, but now I know it is a “rich fertile covering of fatty tissue—a nice place for cancers to grow.” (See definition of omentum below- reference 6) So when my “omentum” was removed, it certainly did affect my “momentum.”

Now I say all that to say this, as I wrote to “Trailrunner” yesterday, https://csn.cancer.org/comment/1615051#comment-1615051

EVERYTHING NEEDS TO COME OUT when a hysterectomy is performed because OC can occur even after the ovaries have been removed. If I’m reading your letter correctly, your mother still has one of her ovaries left. I can also see the wisdom of the appendectomy because when one’s appendix ruptures, it can set up a cancerous condition that if left undetected and unattended can develop into Appendiceal or Peritoneal Cancer. When I had my CT scan here in November there were multiple tumors floating all around in my Peritoneal fluid in my abdominal cavity. Like I said, when I had my SECOND opinion 3 weeks later, it was discovered that both ovaries were infiltrated with the cancer as well. So that meant most likely that the ovaries were the “primary source”, even though it is now believed that the primary source of my ovarian cancer actually began in my fallopian tubes. That’s why my gynecologist says he no longer “ties the tubes”, he removes them. However, as I’ve said before, no matter whether it is Peritoneal or Ovarian, they are treated in the same fashion as far as initial chemotherapy is concerned.

So for anyone else that may read this letter, if you know that they are anticipating a hysterectomy, please tell them to “take everything out.” Removing my uterus at age 36 stopped the heavy bleeding, but it didn’t stop the Ovarian cancer almost 40 years later. It’s no time to “try to save something” because you feel like less of a woman—it’s time to think about preserving what quality of life one has left.

So this is just my story and perhaps it will be beneficial to anyone reading this, especially if they are anticipating a hysterectomy.   Let’s hope your young mother’s treatments will be totally successful and that there will be no further metastasis. Below my name are a few references that might be helpful for her along the way. It is to her advantage to have you in the medical field and close to such caring doctors. Wishing her all the best, and you as well. The “older” we get, the more we appreciate our mothers. I can remember as a child at the age of 12, how I hated to do the supper dishes. Oh sure Mama had cooked the meal, cleaned the house, made many of our clothes and took care of us six children—but still—me having to wash the dishes after supper was a major workload. Now I look back and say to myself, “Oh if I only had to do the supper dishes.” It is true that woman’s work is never done! Some things never change. But now, I’m thankful to be able to still cook and clean house, although it requires my husband’s help. And I thank God that my husband is still around to help. So enjoy your mother, encourage her and let her know you’re with her all the way, and that you will “keep up with all things medical that she needs to know about!”

Wishing for your mom a successful chemo treatment regimen and complete remission,

Love Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer, Stage IV) Presently undergoing 4 in a series of Carboplatin/Paclitaxel (Taxol) regimen in the hopes that it will “knock” back the spread of my cancer.

_______________________________________________________

1.      http://www.chemocare.com/chemotherapy/drug-info/carboplatin.aspx

2.      http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

3.      http://csn.cancer.org/node/301646 - This is a letter I wrote to “Brian” whose mom was going to begin chemotherapy. There are things in this letter that should help your mom as well. (“BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”)

4.      http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/stages-grades

5.      http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/stages-grades/stage-3

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

“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.”

7.      http://news.cancerconnect.com/stage-iii-ovarian-cancer/

“…Overview

Patients diagnosed with stage III ovarian cancer have cancer that has spread from the ovaries and pelvic organs into the upper abdomen or lymph nodes.

Stage III ovarian cancer has not spread to sites outside the abdomen or inside the liver. The following is a general overview of the diagnosis and treatment of ovarian cancer. Each person with ovarian cancer is different, and the specific characteristics of your condition will determine how it is managed. The information on this Web site is intended to help educate you about treatment options and to facilitate a shared decision-making process with your treating physician…”

________________________End of references______________

Hello, thank you so much for

Hello, thank you so much for the reply! My mom did have both ovaries removed. I am fairly certain her GYN/ONC is very aggressive. SHe took anything and everything she could get her hands on. As of now, she "virtually" has no cancer in her body. About to have her second chemo treatment.

Stage 3C solely based on Lymph Nodes

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