Newly diagnosed and some questions

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

 

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.

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.

 

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.