Newly diagnosed and some questions

Jodisgoing180 · February 2016

A week ago, I was running 8 miles, and now stage 4 ovarian cancer.

OK long story short. No symptoms went for a annual physical, got a x-Ray on my chest, and found a pleural effusion. They did a CT scan, and found a mass. Turns out my right ovarian has a cancer on it. It's pressing on my uterer, causing minor kidney damage. On CT scan all organs look good. Only reason stage 4, the fluid in my lungs tested positive, but it's transudative (good). I had the fluid drained and stent placed. I came home from the hospital last night. Friday is hysterectomy and chemo to follow.

Now that I am home diagnosed, I have symptoms. Is this normal? I am achy, tired, and have twinges of pain. Is this normal? There are no signs of cancer on any other organs, but now second guessing every pain.

Unknown · February 2016

HI

i am sorry that things are happening so fast (& so scary). I hve UPSC so while not the same as ovarian, we usually have the same treatment. I know I never had pain, but now that I'm going through chemo I have unexplained twinges of pain and am trying very hard not to think that it's the cancer. I had a full hysterectomy, they found 1 lymph node positive, so I'm considered stage 3. I think right now, everything for you is probably the same as before you knew you had this diagnosis, it's just that you are being aware of everything. Good luck on Friday, my surgery was the best part of my treatment so far. Also, there are a wonderful group of ladies on the uterine cancr forum, stop over there also to talk. Hugs Nancy

EZLiving66 · February 2016

I'm so sorry you've been

I'm so sorry you've been diagnosed with ovarian cancer. It sure can turn your life upside down. I had no symptoms either and found out after my hysterectomy I have Stage II UPSC (uterine cancer). I know what you mean - every little twinge makes me wonder if there's another tumor someplace else.

I wish you the best!!

Love,

Eldri

LorettaMarshall · February 2016

Jodi~Unexplained aches & pains R normal along w/days w/no pain!

Dear Jodi~

It’s often said, “Misery loves company”, but I’ve not found that to be so in this world of cancer at any stage, especially Stage IV of any kind!

Not wanting to repeat the long entry I posted on another story, you can read much of my story at this link~~ http://csn.cancer.org/node/299547

All of us identify with your diagnosis. Many of us had no prior medical problems or even any pain and yet all of a sudden we go from “healthy to Stage IV.” So yes we’re all sorry, but you want to know if others have similar stories. As for me, when I went to the hospital thinking I had a hernia, and came home with a Peritoneal Carcinomatosis diagnosis, I too did a “180°”. Questions swirled around in my head, but with no immediate answers. After exhaustive research, I would come to learn that the many tumors floating around in my Peritoneal fluid in my abdomen lent themselves to my being “terminal.” No, I didn’t panic but was dumbfounded in the beginning. What is this? Who has had it? Is it treatable? Am I going to live or die? This is not what I wanted to hear? Then when I learned it was definitely terminal at some point, I wanted to know if even with that diagnosis, would I immediately become incapacitated and die right away. Or would I be given a reprieve and live a bit longer. Family faces become even more dear~~life even more precious. But God reminded me that my time was in HIS hands, and I am still here entering my 4^th year of survival.

Yes, I’ve had pre-op chemotherapy of Carboplatin and Taxol, plus major Cytoreductive surgery in July of 2013. It was NOT a piece of cake, but God brought me through it. And now my CA-125 markers are rising rapidly once more, but I’m still convinced that my times are in HIS hands, and that I’m not going to leave this earth one day sooner than my “allotted” days. My faith in the Lord and my faith in my doctors keep me in a positive state of mind, even as negative thoughts are vying for my peace of mind. So prepare yourself for battle, and don’t attend your own funeral today. Do your own research, ask lots of questions and expect honest answers from your doctors.

“Doing a 180” puts you in a different direction for sure, but it doesn’t mean that you can’t have victories along the way. God didn’t promise to heal me, but He did promise if I would keep my thoughts on Him, that I wouldn’t have to live in constant fear, but I could experience His peace and a “sound mind”. I’m counting on that as the “waters rise” in my own life.

When I had my second opinion at the University of Pittsburgh Medical Center, a PET/CT scan would also find that in addition to innumerable tumors floating around in my abdomen, that my ovaries also were cancerous. Since then I have learned that clinical tests indicate that Ovarian cancer can originate in the Fallopian tubes. They are highly “suspect”! My own gynecologist thinks this as well. Now he removes the ovaries, uterus and fallopian tubes when he performs a hysterectomy. Having only had my uterus removed at age 36, now 40 years later, I would advise anyone having a hysterectomy today to have everything removed. I would never leave a “suspect culprit” in my body! So all who read your letter will be praying that your doctors are the best there are and that they will remove every trace of cancer possible and that you will have a good recovery . Nope, you won’t be running 8 miles for a while, but don’t lose site of your goals in life.

Peritoneal Carcinomatosis and Ovarian cancer Stage IV are treated similarly but both are still only considered “palliative” with no promise of a cure. So first I have to wrap my mind around that “reality” and take life from there. For sure it’s a 180. Still there is much we cherish about life even living with this reality. The oft said cliché “live life one day at a time” really does take on new meaning, and we cherish each new day—even with its difficulties. So Jodi, don’t give up and lose heart. Like me, you’ve still got a life to live and a lot to give!

Now into my 4^th year of living life in the “fast lane” just a little bit slower.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

Carrot358 · February 2016

newly diagnosed

Hi Jodi,

Once the shock goes, it is a new world of research, learning, all kinds of new people, scary things and interesting things. I was about to go biking with friends the morning I woke up and felt a mass in my lower abdomen. I decided it was constipation - me, cancer - no way. Way. That was September. Had complete hysterectomy with tumor and omentum removed. Diagnosis, carsinosarcoma 3C, only 200 women get this in a year in the US. They don't know much about it. So there has been lots since then, all headed towards life and living. Hope you have a doctor you like and get a second opinion, helpful to the MDs and yourself, friends and family who care about you. As you take each step you will learn more, on this site and from many others along the way. All of the best.

Carrot

Jodisgoing180 · February 2016

LorettaMarshall said:
Jodi~Unexplained aches & pains R normal along w/days w/no pain!
Dear Jodi~

          It’s often said, “Misery loves company”, but I’ve not found that to be so in this world of cancer at any stage, especially Stage IV of any kind!

          Not wanting to repeat the long entry I posted on another story, you can read much of my story at this link~~ http://csn.cancer.org/node/299547

              All of us identify with your diagnosis. Many of us had no prior medical problems or even any pain and yet all of a sudden we go from “healthy to Stage IV.” So yes we’re all sorry, but you want to know if others have similar stories. As for me, when I went to the hospital thinking I had a hernia, and came home with a Peritoneal Carcinomatosis diagnosis, I too did a “180°”. Questions swirled around in my head, but with no immediate answers. After exhaustive research, I would come to learn that the many tumors floating around in my Peritoneal fluid in my abdomen lent themselves to my being “terminal.” No, I didn’t panic but was dumbfounded in the beginning. What is this? Who has had it? Is it treatable? Am I going to live or die? This is not what I wanted to hear? Then when I learned it was definitely terminal at some point, I wanted to know if even with that diagnosis, would I immediately become incapacitated and die right away. Or would I be given a reprieve and live a bit longer. Family faces become even more dear~~life even more precious. But God reminded me that my time was in HIS hands, and I am still here entering my 4^th year of survival.

          Yes, I’ve had pre-op chemotherapy of Carboplatin and Taxol, plus major Cytoreductive surgery in July of 2013. It was NOT a piece of cake, but God brought me through it. And now my CA-125 markers are rising rapidly once more, but I’m still convinced that my times are in HIS hands, and that I’m not going to leave this earth one day sooner than my “allotted” days. My faith in the Lord and my faith in my doctors keep me in a positive state of mind, even as negative thoughts are vying for my peace of mind. So prepare yourself for battle, and don’t attend your own funeral today. Do your own research, ask lots of questions and expect honest answers from your doctors.

“Doing a 180” puts you in a different direction for sure, but it doesn’t mean that you can’t have victories along the way. God didn’t promise to heal me, but He did promise if I would keep my thoughts on Him, that I wouldn’t have to live in constant fear, but I could experience His peace and a “sound mind”. I’m counting on that as the “waters rise” in my own life.

          When I had my second opinion at the University of Pittsburgh Medical Center, a PET/CT scan would also find that in addition to innumerable tumors floating around in my abdomen, that my ovaries also were cancerous. Since then I have learned that clinical tests indicate that Ovarian cancer can originate in the Fallopian tubes. They are highly “suspect”! My own gynecologist thinks this as well. Now he removes the ovaries, uterus and fallopian tubes when he performs a hysterectomy. Having only had my uterus removed at age 36, now 40 years later, I would advise anyone having a hysterectomy today to have everything removed. I would never leave a “suspect culprit” in my body! So all who read your letter will be praying that your doctors are the best there are and that they will remove every trace of cancer possible and that you will have a good recovery . Nope, you won’t be running 8 miles for a while, but don’t lose site of your goals in life.

          Peritoneal Carcinomatosis and Ovarian cancer Stage IV are treated similarly but both are still only considered “palliative” with no promise of a cure. So first I have to wrap my mind around that “reality” and take life from there. For sure it’s a 180. Still there is much we cherish about life even living with this reality.   The oft said cliché “live life one day at a time” really does take on new meaning, and we cherish each new day—even with its difficulties. So Jodi, don’t give up and lose heart. Like me, you’ve still got a life to live and a lot to give!

Now into my 4^th year of living life in the “fast lane” just a little bit slower.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

My name explained

I have a few reasons for my screen name: few years ago I was not happy with my life, so I decided "do a 180" and be happy and positive. I am a runner, so it's an implication about how fast I run. Finally, I have two kids who are always going two different directions, so I feel like I am going 180 miles per hour. It is not negative or anything.

Tethys41 · February 2016

Options

Jodi,

I had a similar experience to yours. I did have pelvic pain in my bowels for a number of weeks prior to my diagnosis as well as continual bleeding. But it wasn't until I was diagnosed, prior to my surgery, that the fatigue and constant pain set in. I have subsequently learned that a procedure as simple as a biopsy can cause the cancer to progress more rapidly. I had a D&C 7 weeks prior to my diagnosis and immediately after that procedure was the first time I started to experience pain. and a normal ultrrasound changed into stage IIIC ovarian cancer only 7 weeks later. So, I tend to believe that a procedure, even a simple one, can exacerbate the cancer growth. Loretta, I respect your suspicion of Placidway and I can't comment on that particular website, but I can say that I went to one of the facilities advertised there. Not only do I feel it helped me, I saw many patients there who were coming for their third and final visit, who were NED after receiving very dire diagnoses. I, personally, have not relied strictly on conventional medicine to address this disease, There are good doctors in this country, but cancer is a far more complex condition than the view held by most conventional oncologists. Each patient comes to the table with their own collection of issues that contribute to their disease. And the treatment causes its own problems. My gyn/onc did not think I would acheive remission or even live beyond a year after my surgery because it was suboptimal and the cancer was very aggressive. That did not instill much confidence in me, so I followed most of his advice but I amassed a team of health professionals to help guide me through this, professionals who offered me options to support my body through treatment and heal it after treatment was complete. I finished chemo in March of 2010 and am still NED. The clincs listed on the Placidway website can be attended by directly contacting them. I don't know whether this website charges an additional fee if you make your contact through it, or not. But it is a great resource referencing clinics that offer options for cancer patients. Everyone is entitled to address this disease in the manner in which they choose, whether it is strictly through conventional medicine, or incorporating a variety of approaches. What I will advise is that if you opt for something beyond conventional medicine, do your research, talk to people who have incorporated the options you are considering and consult with experts. There are experts who offer integrative options, who are knowledgable and who have good results. Jodi, good luck with your surgery and your treatment.

alisonthrives · February 2016

healthy to stage 4

Hi Jodi, so sorry you joined the OC club. My story is similar to yours. I couldn't run any miles, but I was working out in the gym regularly, lifting weights & up to 40 minutes on the eliptical. I was 54 yrs old. In Feb last year I began having a bit of chest pain that was mistaken for viral pericarditis, but it didn't improve with treatment. Beginning of March I went to the ER because I was having trouble breathing - chest x-rays & CT showed significant pleural effusion on the left. Thoracentesis removed 1.5 liters of dark red-brown fluid, and surgery was required to insert a chest tube (to remove the rest of the fluid - total was almost 3 liters) & pleurex catheter (in case the fluid built up again) & do a biopsy of the pleura & fluid, both of which came back positive for adenocarcinoma suggesting gyn origin. Still the doctor was thinking lung cancer, esp. since a CT of my abdomen couldn't find any cancer and OC pleural effusion is usually on the right. After several more tests (PET-CT, tissue of origin, CA125) I visited a gyn-oncologist who thought it was likely ovarian cancer. In April she laproscopically removed my whole reproductive tract vaginally, and also removed my omentum, biopsied lots of sites in the area and did a cystoscopy. The only cancer she found was my right ovary (entirely overtaken) and next to my left ovary, & some cancer cells in the wash. Even though the cancer was stage 4B high-grade serous adenocarcinoma, she was very happy that it hadn't spread throughout my abdomen, & explained that cancer in the pleura responds very well to chemo. A week later I started chemotherapy, first cycle carboplatin alone, then 3 weeks later started 6 three-week cycles of carboplatin & dose-dense (weekly) taxol. My CA125 responded very quickly, getting down into the normal range within a few cycles. After a new PET-CT after I finished chemo in Sept, I was declared in complete remission. The doctors are following my CA125 & I'll have another PET-CT in March. I understand that I may or may not be totally cured, but since the cancer is a fast growing kind, if it is going to come back, it will probably do so by March 2017. If it doesn't I should be able to get my port removed. If it does, my surgeon said it could be managed as a chronic condition.

I had chest pain from the pleural effusion & surgeries that went away during chemo. I found it important to gently stretch regularly after the chest pain began to subside, and to walk daily as I could tolerate - I couldn't do a lot, but what I did was important. I stopped working right before my surgery. Chemo gave me lots of side effects - weakness, fatigue, nausea, hair loss, anemia, chemo brain, etc, eventually finger nail separation & peripheral neuropathy, but I tolerated it well. Lorazepam before chemo helped me not to stress. My husband & daughters were & continue to be wonderful support for me.

My surgeon told me it would take a year to get over the effects of the chemo, and that healthy food, exercise & low stress were important & may help prevent recurrance. So I followed her advice and have been doing strengthening exercise, stretching & walking or eliptical nearly daily, gradually increasing as I can tolerate. My strength is almost back up to where it was last year and I can go 35-45 min on the eliptical. My energy is not back to normal, but it is increasing. I started back to work part time last week. My hair is almost pixie length, but I still sometimes wear my wig. My nails are almost back to normal. My mind is getting clearer, but I won't drive on the Baltimore beltway yet.

I writing you this to let you know you aren't alone. It is hard, but there is hope. Although I'm happy about the complete remission, I still stress about the possibility of the cancer returning. So in January, a social worker at my surgeon's introduced me to a cancer support center which offers support groups, classes in yoga, meditation, & exercise, and various seminars. I've started attending some of these and have found support, understanding & hope. Getting back to work is also therapeutic. I pray that your treatment isn't too bad and that it successfully removes all your cancer, and that the cancer never returns and you live a long healthy life hereafter.

LorettaMarshall · February 2016

This is NOT a place 2 advertise medical trips to another country

Actually, “John”, I have seen your advertisement in several other discussion links here. I doubt that any of us who have Ovarian Cancer have a desire to purchase a medical tourism package from “Placidway” to find a cure for Ovarian Cancer, or even a better operation. Oh God, how we wish an operation could “fix” our cancer!

http://www.placidway.com/packages.php

We have excellent facilities here in America for the “treatment” of all kinds of cancer. We have the best medical facilities in the world. I, for one, don’t want to give false encouragement to any of my “suffering sisters” in the form of holding out false hope that by traveling out of the country, that they can find better treatment. I, for one, know all I need to know about where to find treatment. Now if you have a destination that promises a CURE, then that would be helpful, but you do not. So I’m a bit incensed by the clever way to advertise your global company. So, I’m not the least bit impressed by your statement “You can read a lot of details, new procedures on Placidway site. Anyway, we are all here to help. Wish you best luck!! “

SORRY John but your “sympathy is suspect.”

Sincerely,

Loretta Marshall

Stage IV Ovarian Cancer

Peritoneal Carcinomatosis

Jodisgoing180 · February 2016

alisonthrives said:
healthy to stage 4
Hi Jodi, so sorry you joined the OC club. My story is similar to yours. I couldn't run any miles, but I was working out in the gym regularly, lifting weights & up to 40 minutes on the eliptical. I was 54 yrs old. In Feb last year I began having a bit of chest pain that was mistaken for viral pericarditis, but it didn't improve with treatment. Beginning of March I went to the ER because I was having trouble breathing - chest x-rays & CT showed significant pleural effusion on the left. Thoracentesis removed 1.5 liters of dark red-brown fluid, and surgery was required to insert a chest tube (to remove the rest of the fluid - total was almost 3 liters) & pleurex catheter (in case the fluid built up again) & do a biopsy of the pleura & fluid, both of which came back positive for adenocarcinoma suggesting gyn origin. Still the doctor was thinking lung cancer, esp. since a CT of my abdomen couldn't find any cancer and OC pleural effusion is usually on the right. After several more tests (PET-CT, tissue of origin, CA125) I visited a gyn-oncologist who thought it was likely ovarian cancer. In April she laproscopically removed my whole reproductive tract vaginally, and also removed my omentum, biopsied lots of sites in the area and did a cystoscopy. The only cancer she found was my right ovary (entirely overtaken) and next to my left ovary, & some cancer cells in the wash. Even though the cancer was stage 4B high-grade serous adenocarcinoma, she was very happy that it hadn't spread throughout my abdomen, & explained that cancer in the pleura responds very well to chemo. A week later I started chemotherapy, first cycle carboplatin alone, then 3 weeks later started 6 three-week cycles of carboplatin & dose-dense (weekly) taxol. My CA125 responded very quickly, getting down into the normal range within a few cycles. After a new PET-CT after I finished chemo in Sept, I was declared in complete remission. The doctors are following my CA125 & I'll have another PET-CT in March. I understand that I may or may not be totally cured, but since the cancer is a fast growing kind, if it is going to come back, it will probably do so by March 2017. If it doesn't I should be able to get my port removed. If it does, my surgeon said it could be managed as a chronic condition.

I had chest pain from the pleural effusion & surgeries that went away during chemo. I found it important to gently stretch regularly after the chest pain began to subside, and to walk daily as I could tolerate - I couldn't do a lot, but what I did was important. I stopped working right before my surgery. Chemo gave me lots of side effects - weakness, fatigue, nausea, hair loss, anemia, chemo brain, etc, eventually finger nail separation & peripheral neuropathy, but I tolerated it well. Lorazepam before chemo helped me not to stress. My husband & daughters were & continue to be wonderful support for me.

My surgeon told me it would take a year to get over the effects of the chemo, and that healthy food, exercise & low stress were important & may help prevent recurrance. So I followed her advice and have been doing strengthening exercise, stretching & walking or eliptical nearly daily, gradually increasing as I can tolerate. My strength is almost back up to where it was last year and I can go 35-45 min on the eliptical. My energy is not back to normal, but it is increasing. I started back to work part time last week. My hair is almost pixie length, but I still sometimes wear my wig. My nails are almost back to normal. My mind is getting clearer, but I won't drive on the Baltimore beltway yet.

I writing you this to let you know you aren't alone. It is hard, but there is hope. Although I'm happy about the complete remission, I still stress about the possibility of the cancer returning. So in January, a social worker at my surgeon's introduced me to a cancer support center which offers support groups, classes in yoga, meditation, & exercise, and various seminars. I've started attending some of these and have found support, understanding & hope. Getting back to work is also therapeutic. I pray that your treatment isn't too bad and that it successfully removes all your cancer, and that the cancer never returns and you live a long healthy life hereafter.

Thank-you

my thorantensis was clear-- they had to dig for cancer cells. I am in recovery from a radical hysterectomy. There were cancer cells on my diagphram, abdominal wall, stomach, liver, intestines, ect. All small, all removed with minimal damage from cells. Largest cells are peanut sized. Rest of cancer will not live with chemo. I start in 3 weeks, should lose my hair in 6 weeks.

ElzBelz · February 2016

Hi Jodi, Just joined the

Hi Jodi, Just joined the forum. I was diagnosed with stage 4 Ovarian cancer in May 2014. I also had a kinking in my right ureter due to tumor pressure. This corrected itsef over time. I was staged at 4 because it spread to my supraclavicular lymonode in left side of neck. No major organs though. You will have a better idea after surgery and pathology report. Good Luck to you.

Newly diagnosed and some questions

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