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My recurrance is offical. I start back on chemo Monday. :(

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Well, ladies, this isn't the news I wanted to be posting. I remember how I felt when Fran's cancer recurred. I sincerely felt so very very bad for her, and at the same time, I felt that shiver of knowing "if it could happen to her; it could happen to me." I'm so so sorry for sending that shiver up each of you. Please try not to react that way; it's been hard enough for me to see my husband's haunted face and my son crying and my granddaughter sobbing. I always thought how HARD it would be to go through cancer alone, but to witness the pain my cancer is causing my loved ones,.... I guess I'm saying that there are pluses to not dragging others through it. I didn't wear mascara to my appointment and took a bunch of tissues, prepared to cry at the news. But I didn't cry at the oncologist's. I didn't cry until my granddaughter called me sobbing. (Parents should realize that 8 year olds are NOSY and LISTEN when they are talking!) I had to go give her a hug and eat ice cream with her and reassure her that I would still be around as long as I could.

Anyway, here are the details: First the GOOD NEWS: I have no tumors on any of my organs, but I have cancer recurrance in 3 lymph nodes: 1 under my left armpit; 1 behind my stomach; & the one my DIL saw in the pelvis between 1 of my kidneys and my aorta. None are bigger than an inch. Because UPSC is often microscopic in the lymph nodes, my oncologist finds needle biopsies to be too hit-or-miss to be diagnostic, and feels confident that the sharp rise in my CA-125 and the PET-scan are enough to confirm the cancer recurrance without second-look surgery or a biopsy. (only my underarm node would even be a possibility for surgery or a needle biopsy as the others are located in the wrong places. & he said at this point "would it change the treatment decision or prognosis? NO, so why go through that?")

He offered me the option of waiting to start treatment until after the holidays, or to get started with a low dose of taxol (JUST taxol) once a week. With the lowered dosage, I don't have to take steroids except the ones given just before the infusion which will only last an hour. Because we are no longer going all-out for a cure, the goal will be to hold the cancer in check and get me back into remission (i.e. CA125 and NED CT-scan). The pattern of my life will now be repeated cycles of treatment and remission over and over, like the ladies with ovarian cancer. So I decided to start right in on it. If after 4 rounds of taxol my CA125 doesn't start dropping, I'll need to get a port and start on Doxil or cisplatin/adenomiesin (sp??), or by then I will be able to add carboplatin to my taxol. The bowel issues are unrelated to the cancer recurrance & are a side effect of the radiation, and I being set up with a nutritionist to help me deal with that.

There's a lot more, but I am exhausted with the emotion of the day. So sorry to have such crappy news. And remember, just because it happened to me does NOT mean that it's just a matter of time until it happens to you. I just wasn't lucky. ((((HUGS)))))

california_artist
Posts: 850
Joined: Jan 2009

I think we are all in shock. I went over to facebook and wrote over there while you were writing here. I'm sure you're just wiped out emotionally. Thank you so much for letting us all know.

When you feel like it come back on, maybe we can figure more on a plan of attack.

Love you oodles,

Claudia

My heart is broken. I still can't believe it. You did every single thing they told you to do.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

SO VERY HELPLESS.... my heart breaks for you with this dreadful news. You will have a lot ahead of you Linda. I read the ovarian board a lot ... they are fighters ... and you are too. You have to be totally exhausted, but know that I am here if you find anything that I can do to help. You and your family are in my prayers. We need the miracle of a cure. I know hugs aren't enough.. but you have mine. Peggy

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Hello girlfriend,

Sending you a hug long distance. Sorry your news was not better or what you should have heard...It is so damn hard, but important we all stand strong for each other to get us thru the tough moments.

I start my Chemo on Monday too, so we can hang together. This will be my first round combined with Radiation. I will need to lean on all of you to answer all my questions.

I cannot imagine how hard it was for you to talk to your Granddaughter...I still have not told my Mother and I need to do that before next Monday...

Stand strong, we are all behind you!

Laurie

thank you
Posts: 77
Joined: Jun 2009

I just visited the ovarian cancer posts. Women there are used to this lifestyle, cycles of treatment with brakes, for years!!!!. I am - as everybody else - not happy with the news (No this CAN'T happen to Linda!!!). But reading their posts, helped me feel better, this is NOT the end!
Linda you are here, alive, full of energy, with a wonderful family, a wonderful husband and many other people who never met you but we feel that we love you. You are here, able to win. Cancer can be a chronic disease like my patients, patients with connective tissue diseases which flare up and remit. Just think, if it was not for the hair loss, would you mind the lifelong treatment?
You are NOT SICK! You only have 3 enlarged lymph nodes. You again caught it early. In one month, CA 125 will be normal, and you will be NED.
I remember reading one of your posts: "It is good to deal with our own mortality". I actually think that everybody should do it, regardless of their health. Many of us who consider ourselves healthy - "the undiagnosed yet", don't know what next day has in store for us.
Who cares about the hair! Go, and take these cells away from your body!!!! Your family, your grand kids WANT YOU not your hair!!!!
BEST!
Chrysoula

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda,

I am so saddened to hear your news and feel so sorry about the awful news you received today. BUT, you have a plan, you are moving ahead quickly, you are well informed, you are a STRONG and POSITIVE Woman... I am counting on a very long remission for you.

I can understand how exhausted you must feel, but know that you have a HUGE group of women who are praying and supporting you, each and every day! Don't hesitate to let us know what we can do for YOU!!

HUGE hugs to you and your family!

Karen

Katrinka123
Posts: 54
Joined: Jul 2009

Linda, I was so certain your news was going to be different. I feel awful that you are going to be back at it in less than a week. I have a very dear friend who has been battling cancer in just the way you describe, in and out. She does LIVE her life and works it all around her treatments.

All my prayers for you while you prepare for this fight.

-Kat

Kate2005's picture
Kate2005
Posts: 7
Joined: Nov 2009

I'm so sorry to hear your news. It sounds like you almost knew what the answer was, that had to have been hard.

I'm glad you are keeping your head up and staying informed. You give so much on these threads I'm wishing you the best.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Like others, I am speechless and sad. Thank you for sharing this news with us. You are a wonderful example of strength, grace, and light. I wish you serenity and peace.

Love, Mary Ann

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I was so hoping for better news from you today, and I know what you went through after the news. I was crying so hard after I left the doc's it took me 45 minutes to start my car. That was the first bad news, the second one I had my husband with me and that was the worse news ever. I will be joining you with the chemo treatments so we and the rest of our sisters can cry together. This was the first time I wanted a pill to take the pain away (mental pain) and I still haven't gotten the word if they are going to give me anything yet.
I do good for the weeks after the treatments but as soon as it's time to go I get so depressed a few days before hand. I keep telling myself it's a chronic disease and I need to deal with it and just go on, some days it works and other times not so good. I am getting better each week knowing that this treatment just might keep it in check, so now that's the same as you. I have to have 2 more treatments before my next scan. The waiting game is the hardest so I just try to keep busy. I was like you I did not want to take the chance and wait, and had it right away. I am on Doxil and the side effects are pretty mild except I get tired easy. Linda we are all here together for one another and I am so happy for the sisterhood.

Love and hugs from Oregon

culka's picture
culka
Posts: 158
Joined: Oct 2009

I agree with Patricia (must be that Slavic blood), it`s happening too fast, can`t be true. For last three days I was listening Gerson`s tapes. I am not pushing anybody, but if Linda did everything what she was told by white coats, it is time to start something else.

At the beginning of my journey I found web Doctor Yourself, don`t ask me how, I don`t remember. But I keep coming back there and finding my peace. This is one article
http://www.doctoryourself.com/terminal.html and this part I love:

The only thing good about yesterday's obituary column is that you weren't in it, and the proof is that you are reading this today.

Cancer battle need cold head and worm feet, so good luck on Monday or don`t be afraid to postpone the treatment.

geology's picture
geology
Posts: 12
Joined: Oct 2009

Linda I have not posted much but have been following the posts. I am so sorry to hear of the recurrence, you will be in my thoughts and prayers. Stephanie

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

I'm so sorry Linda this is lousy (wow that's an understatement). I just want to chime in and let you know you started this and you are going to continue leading this wonderful bunch of women through. But please lean on on us - we carry each other through and nobody gets the fear, anger, pain, blessings, laughter and joy better than we do. I am sending you my love and visualizing you protected with a white gold light-it's the same one I keep around me to help me through. Barb

cookie1948
Posts: 79
Joined: Feb 2009

Linda,
I am so sorry for the results of your pet scan. I really thought it was not going to turn out like this at all. I hear the pain of your loved ones finding out this news also.
I am thinking good thoughts for you and I wish u luck next week. Please know that hugs go out to you. I am glad this was caught early, but I so wish this would not have happened to you. Keep your strength and hope. , and thanks for being there for everyone here.
Cookie

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Linda as before you will find the strength to follow through with treatment...you have too much living remaining...so much love to give and receive

my heart is broken; I share your dread and also your hope

Marie

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Sorry to hear the bad news. Look at this as a little glitch in your journey. I've had cancer since
2007 - somehow they keep me going. I'm sure with your resources and stamina you will
gracefully keep moving forward.
Sending warm wishes, Mia
'

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

I, like all the others, am sorry to hear your "crappy" news. I wish I had some words of wisdom or could wave a magic wand and make cancer go away. Unfortunately I don't have either one. Just know that there are a lot of people who care about you and will be thinking of you and offering whatever support they have while you once again go through treatment. We have all learned so much from you.

Telling family is the toughest thing I can think of. It is especially hard with the grandchildren.

Keep thinking positive - if you can - and know that there are a lot of hands holding you up.

Chris (Gunhild)

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Dear Linda -

What a blow – I’m so sorry that your suspicion has been confirmed. I was very much hoping for (make that counting on) a different diagnosis. Even when we think we are emotionally prepared, we find we are not. This recurrence is so hard for all of us because you are “our Linda” who helps us all with her wisdom, humor, and love. I’m glad you have a treatment plan in place. You know we are all here to support your decisions and encourage you to persevere along your chosen path, even those of us who have never formally joined our group.

Hugs from Sally

Kaleena's picture
Kaleena
Posts: 1010
Joined: Nov 2009

Linda:

I am sorry for your diagnosis. I know of the agony of the waiting for results and watching your family. When your husband is irritated or cross about something, you right away feel that it is because of what is happening to you. Keeping an upper lip is sometimes very hard and really takes a toll. I want to just step outside and scream. But then we do what we always do. Chin up, get strong, get going, and don't stop.

Yea it is crappy news. But you have so many wonderful people praying and listening to you.

(((((HUGS TO YOU)))))

Kathy

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Linda,

Only you would think of us with this reoccurrance. You didn't want to make us afraid for ourselves. What a woman you are! You have fortitude, love, grace, humor, and a deep sense of caring. You are what we all should be.

You have alot of living to do yet and you will go forward. Who needs hair anyway? I agree it is heartbreaking to see your family so upset. Their strength will come back.

I am writing little stories for my grandchildren (I don't have any yet.) Someday they can read them with their parents and perhaps their own children. I keep the stories short; just about my childhood, meeting my beloved husband, and simple things like when I lost my favorite dog and she was found again.

Love,
Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Your family is hurt and crying. I remember when my father was diagnosed with colon cancer; we were told right away it could not be cured. I can still feel the tears.

But then a surprising thing happened. We learned to live with the illness, the ups and downs. Dad learned to rest when he needed to. But best of all we really lived. He even flew out to see me for Christmas. He smiled and never lost his interest in life until he was really ready to go. But what I want to tell you is that your loved ones learn to live with this and they find themselves in a pattern of life and love. Let them care for you when they need to. I still think of all of the fun times we had together while he was on chemo. He could still make us laugh. I remember when he helped chop our grandparents old farmhouse before they tore it down. We wanted a piece of that old house. I can see him swinging the ax while we screamed like kids. My grief occured mainly after I lost him. He is with me inside and I love him so. Always will. He gave me a great gift; he taught me how to live with cancer.

You may live a long time with this cancer. None of us really knows. Friends are here for you. In the dark nights your friends - that's us - are angels in spirit. You don't have to be brave everyday for us. You can just be Linda. I've had breast and now this. Cancer has been a part of my life for a long time.

Diane

california_artist
Posts: 850
Joined: Jan 2009

Maybe it's an infection. My two lymph nodes never did grow any bigger. How big were those nodes???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My report says:

FDG avid left auxillary lymphadenopathy with the largest node measuring 1.0 x 1.2 cm and having an SUV of 8.3. (LINDA'S NOTE: the one in the arm pit, I'm guessing. SUV is the degree it lights up on the PET. Must've been bright because this is the only SUV noted on the report).

FDG avid retrocrural lymph nodes with the largest measuring around 8mm. (LINDA'S NOTE: the one behind the stomach).

FDG avid para-aortic lymphadenopathy beginning at the left renal vein, extending inferiorly to just above the aortic bifurcation. The largest nodal conglomerate measures 1.9 x 2.1 cm. (the one on the pelvis between the kidney and a big vein.)

No other areas of FDG uptake are present.

Then the scan notes that I have 'numerous surgical clips' along the common iliac chains (where they clipped off my surgical staples, I guess), and "fat stranding throughout the lower abdomen and pelvis representing recent surgery or radiation change."

california_artist
Posts: 850
Joined: Jan 2009

Did some quick research.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563015/

Regarding PET scans

…On other hand, some acute infectious and inflammatory processes such as TB, Cryptococcus infection, and rheumatoid nodules might have high SUVs that often overlap with the SUVs of rapidly growing and undifferentiated tumors...

standardized uptake value (SUV).

That'd be us, undiffernetiated tumors. Okay, it's a straw grasping exercise, however--

I'm just sayin'

Love ya,

claudia

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I like your "secret tiny hopeful dream"! I will hang my hope on it too!

Karen

thank you
Posts: 77
Joined: Jun 2009

These lymph nodes will shrink, your CA 125 will be normal for ever... you just have to go through the treatment again. All these stories we hear about people who were told they will die from cancer but lived and went to the funeral of the doctor who gave the news?
My best friend lost her mother from ovarian cancer when we were students. When my mom was diagnosed she told me: Don't cry for her as if she was dead, while she is alive!!!!!
This is the best advise I had since my mom was diagnosed.
I also remember your answer when I asked you how you stay so positive: It's not how long you live, but how you live you said. My fear for my mom is that she is very frail and will get depressed with the news of a terminal disease. That's why I kept secret the severity of her disease. But, I don't feel sad that she might die soon, because I know (from life and from my job) that I might die much earlier than her.
Today, I admitted a 16 year old girl to ICU. She is bleeding into her lungs. She does not have cancer, but her quality of life is awful since she was diagnosed with vasculitis. I am trying to say, that you have been active, and full of energy and dignity. I admire you and although I am not happy with the news, I don't pity you. YOU ARE ALIVE, HAPPY and you know how to cease the day!
I want to be like you!!!!

MoeKay
Posts: 63
Joined: Feb 2004

Funny you should say this, Linda:

"They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway!"

I have been thinking virtually the same thing, and I'm really not sure why. I must confess that I still am not totally convinced this is what they are saying it is.

Perhaps my doubt about whether you are really experiencing a recurrrence is because I've become so suspicious of tests due to my recent pulmonary saga (posted on your thread about the rise in your CA-125). Or perhaps it is because during my surgery my gyn-onc stated in my Operative Report that I had "palpably enlarged notes in the obturatur fossa on the left side." The operative report also stated that the obturator nodes were sent separately to pathology because of their firmness and suspicion that the tumor was in the lower obturator chain." In the end, the 30 lymph nodes removed were all negative for tumor.

I know I am stubborn, but I still don't think you have enough evidence to conclude with 100% certainty that you have had a recurrence.

All the best,

MoeKay

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My oncologist also is skeptical of CA125s and PET scans as diagnostic tools. I was given the option to wait a month until after Christmas and re-do the tests before starting chemo. I chose to immediately start taking the low dose of taxol weekly (low enough to not affect my quality of life, other than the bald head). This way I will get weekly CA125 monitoring and a jump on any yukky cells deciding to wander out of those lymph nodes and into any of my organs, as the taxol should at least hold me steady. If the taxol doesn't work, we can always revisit the biopsy idea of that underarm node after the holidays. My oncologist said "we'll make it up as we go along", and I think that's really how it has to work.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Linda,
Tears came to my eyes as I read your note. I am praying for the best possible tolerance of the chemo and quick remission. You are such an inspiration to the many of us who are in the "sisterhood". I don't know how we get through but as strong women we just do. Our angels are with us....helping us...watching out for us always. Stay in the present moment as much as you can---don't look back----tomorrow is yet to come.
(((Hugs)))
Lori

wje630
Posts: 14
Joined: Nov 2008

Linda:

I haven't been on the site for awhile and was sorry to read you have had a recurrence.
I am joining everyone on here who has written you and given you encouragment. When I first started reading posts on here, it was yours that were so uplifting and positive. You also have a great sense of humor, which we all know is a great help when dealing with cancer. I hope during these next few weeks you will be comforted by the fact that all of us here are wishing you the very best Christmas ever and how inspiring you are to everyone on this forum. Keep the faith and God Bless.

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