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How to know if Cancer has spread

npl8261
Posts: 33
Joined: Jun 2009

I am wondering what type of symptons would we have if the cancer started spreading. I read Frans post where she said by the end of the day her bra hurt and that was from the cancer in her lungs.

I will have a full body scan around the one year anniversary from my surgery and lots of follow up appointments with all my doctors but between appointments, tests, scans I want to know what type of symptons I need to be aware of. Anyone have ideas.

Also, just two more radiation treatments and I am done with the External. For me the radiation has been awful, the nausea started the very first night. I have gone for a few acupuncture appointments through this and they have helped greatly. Would highly suggest anyone having nausea, either from Chemo or radiation, to try acupuncture.

bonniesue
Posts: 126
Joined: Apr 2009

Zofran helped my mother and it was 4 mg dissolved on the tongue. Also kept some baby food around when nausea and diahhrea. Glad accupuncture helped.

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

It would be hard to imagine what symptoms to look out for, as the cancer might reappear just about anywhere. I would report any sudden dramatic weight losses or gains, any radical changes in bowel function that you can't tie to the flu, any bleeding or abnormal bruising or swelling or discoloration, any pain that you can't imagine why you hurt, any shortness of breath or headaches that won't go away. I asked my oncologist what to look for, and he say, "If I give you a list of symptoms, you'll think you have them." He wants me to assume that every twinge is NOT cancer, and to count on him to find the cancer if it returns. He said the most important thing I can do to build my immunity is to BE HAPPY.

Did any of you catch the discussion about a month ago on the Ovarian Cancer discussion board? A new study was done of women with ovarian cancer who went back into chemo when their CA-125's rose above their normal levels, but before the recurrance was verified by visibility on a CT-scan. The study showed that this early intervention did nothing to improve long-term survival rates; and that women who waited until the cancer was visible on a CT-scan had the same end results as those who moved for earlier recurrance intervening treatment. Apparently chemo knocks back a 1cm+ tumor as easily as it knocks back a smaller tumor. Most of the women on the ovarian board still wanted the earliest intervention they could get. But I think maybe when you have a cancer like ovarian or UPSC that 'seeds' so broadly and aggressively almost from the beginning, with 3-month oncologist monitoring, perhaps we can just be happy between tests and stop forever looking for a sign that the other shoe is about to drop. I believe in being a advocate for myself and a member of my cancer treatment team, but maybe remission is the time to trust our oncologists and allow ourselves to be happy again and unfettered with worry. What do you think?

thank you
Posts: 77
Joined: Jun 2009

Personally, and being just a caregiver I wonder and I really want to know: How do you manage to have this absolute positive way of thinking and living? I know you have been tired to hear that (how optimistic you are etc.... ), but I am really asking your advise. Since my mom was diagnosed with cancer I haven't been able to enjoy NOTHING (and many good things are happening every day to me). People around me don't know that, since I don't talk, but I am not relaxed. My mom is 8 months after the end of treatment, with no return of her disease.... Do you have a secret to share???

I agree with you that between the 3 month follow up, we should forget this disease. Our oncologist does not even want any imaging at all unless symptoms arise. I did not listen, my mom had an MRI and a false positive finding sent her to a 2nd surgery only to find that this was inflammation. This really hit her hard, since she felt that her ordeal starts again...

Are you getting ready for your trip to Italy and Greece? We have elections on 4th of October there. No more fires.... but also no more green in Athens. But life is still nice and you should not miss the opportunity to visit a traditional (not touristic) tavern with live music, to dance until the sunrise... OPA!!!

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

You ask how I can be upbeat and happy. I have been so blessed in my life. I truly have everything that makes life good: the love of my husband and family, rewarding work, no real financial worries, and up until the cancer wonderful perfect health. How can I be angry or bitter or even afraid when all I have to do is look around me to see all of my blessings? I wouldn't trade lives with ANYone! I have been so lucky always. If my luck has run out, well I still had an amazingly good run and I leave behind a beautiful family that will live on, and a thriving business that I built from the ground up that should continue to make money for my family, and a huge beautiful garden that is almost self-sustaining and will grow into its full potential without me. I see my influence in my children and grandchildren and who they have become, in ways that I think will last. If I don't survive this cancer, I'll be checking out at the top of my game, before I had a chance to disappoint anyone or outstay my welcome by being a burden. And if I luck out and fall into the lucky small percentage that gets CURED of this cancer, I will be unstoppable in my new inner strength. So I'm honestly at peace with either scenario. I want to live FOREVER, but I am happy with my stay on earth even if it gets cut short. I'm genuinely happy. Just am.

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

Linda your comment was just beautiful. My hardest challenge is leaving the people I love so dearly if I recur. That brings tears to my eyes because I love them so much. I had breast cancer and now uterine. I can't waste my time being bitter. I too have had a good run. I am going back to work two days per week and will see the Rose Parade in Jan where my daughter is a grad student. I feel my love and life and lives on through them. I have had a marriage most of us only dream of. I think we all have ups and downs through this because treatment can be so rough. Even Randy Pausch sometimes cried in the shower. My father lived five years before leaving us due to colon cancer. He was a joy to have around all the while he was in treatment. I know there were bad days but also mainly good days. He was happy just listening to his great grandchildren play. My daughters are not married yet nor have children. I am writing a series of stories to my grandchildren. If I survive this cancer I will have them sit on my lap and we will read and talk about the story. IF not, I know someone else will and they will somehow feel the love that I have for them. I am trying to be like my father, keeping my spirits and life positive for those I love around me.

npl8261
Posts: 33
Joined: Jun 2009

I just read your post and noticed you put that your dad died of Colon Cancer. Did you get any Genetic Testing? Uterine and Colon Cancer are the two main cancers associated with the Lynch Syndrome. I have the gene and as a result my entire family has been tested and the ones that are positve will have preventive screening. Not all doctors know about the Lynch Syndrome so it would not surprise me if you have not been tested. My own primary had not heard of it and my siblings doctors had not heard of it.

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

My Gyn Onc and I discussed Lynch syndrome; no one in my family has heriditary polyposis of the colon. My father got colon cancer in his 70's. My colonosocpies are clean; due for another one next month but plan to mention this to GI. I tested neg for BRCA; suspect uterine cancer is from tamoxifen used in treating breast cancer. Thanks for being on the ball!

npl8261
Posts: 33
Joined: Jun 2009

I am glad to hear that you most likely don't have Lynch. For me I not only worry about the Uterine Cancer reoccuring but I also worry about the cancers that are associated with the Lynch Syndrome.

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

I see a lot of bitterness in surviving caregivers and family when a cancer patient ends their cancer battle with a couple of really bad and painful 'last days'. I guess I have a different perspective on this, and I hope to share it with my family so that they won't go crazy should my 'leave-taking' be less than pleasant. I think you need to look at your whole life and not build up the 'final days' with so much importance viewed in the retrospective of your whole life. It's not that important how you die; it's how you LIVE that matters. If I suffer at the end of my days, I hope everyone who cares about me will view that suffering within the context of all of the many many days of joy and vibrancy that comprised the bulk of my days on earth. I hope they will know that any physical suffering I endure will still be less painful for me than having me live on to witness the death of my children or my husband, pain an early death will spare me. And that my 'good' days far out-balance even the most horrible of deaths, and that I am unafraid of a painful end.

I guess I'm just trying to say, for those of you that are caregivers and co-survivors of cancer patients, please don't give the bad days of treatment more importance than they deserve. Please put any pain or suffering you witness within the context of the person's whole life. We all want to die peacefully in our sleep and people talk about that and worry about that WAAAAAAY too much. But it doesn't really matter, in the big picture. It's a small thing, a couple of days in decades of many thousands of days in a person's life. Let go of that pain and bitterness by placing it in the proper context and by giving it no more weight than it truly should have.

Just my 2 cents, and a new perspective I have, courtesy of my cancer.

deanna14
Posts: 734
Joined: Oct 2008

I love this thread and your posts here! I agree with you and would only add one other comment that helps me "keep my chin up." Knowing that that I walk with the Lord in my heart has gotten me through and gets me through even the toughest days. He is with us all in this journey and the journies of our lives and our deaths. Count on it... He is waiting to bring us home in His time not ours or some doctors or even cancers! So, as you said Linda, it is all about how we LIVE, not how we die.

deanna14
Posts: 734
Joined: Oct 2008

By the way... look at all of that hair!! You look fantastic and so happy in your new pic.

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

my father had pain at the end and I gave him morphine by a dropper; I had promised him to help with the pain. Actually he had no pain until the afternoon before he died. It did come suddenly and I worked hard to give it to him. He opened his mouth like a little bird. The hospice nurses guided me over the phone. He went comatose, with all of the hard breathing. By then we had moved him to a hospital bed. My sisters and brother and myself sat on the twin bed opposite his bed. We sat up all night. We actually became so tired that we started talking about our childhood; we laughed at all the stories we had. Our wild out of control pony that Dad loved and almost killed us. Our horse rides. Our back yard summer games. Our family stories that only we could share. We laughed until the tears ran down our faces. Later I worried we were irreverent but realized we gave him the greatest last gift. The happiness of his children and all of the times he was there was making new stories we would remember forever. His body was very mottled in the coma and he had the death rattle, but he awoke right at the end and sat up. He looked towards the heavens and then looked at us as if he wanted to tell us something but couldn't speak. My mother walked in; he smiled and she said "I love you." He looked up again at the heavens, I could tell he saw something or someone. Then he left upwards. I could almost see the spirit go. I remember him smiling, strong, and happy.

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

I love your attitude. I am learning to find something good about each day. Its the only way to survive especially since mine has reoccurred. I wish I could find just one person that has beat it for several years on a reoccurrence, but so far no luck. You just keep enjoying life and what it has to offer and with everyones help I am trying to do the same. God has a plan for me I just don't know which plan it will be yet, but right now its one day a time.

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

As far as warning signs - let your doc know about if any change in intensity, frequency, or duration lasts for 2 weeks.

Re: living life. I believe my quality of life - stage 3a UPSC - has to do with a CONSCIOUS DECISION to be WELL rather than sick - from day one of my diagnosis. I like Fran's attitude about finding something good about each day - we can do this if we want to.

Life is too short to feel sorry for ourselves and we are the ones who lose out in the end.

As for me, I've booked a Belize adventure vacation in February - You are all invited to join me!

At 62, I'm Too busy Living life and not planning on a recurrence.

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

I do believe,like many of you, that life is what we make of it. Once we have faced cancer, life does indeed take on new meaning. I am so happy to be feeling good again and hope to make the most of each day that I have. I can't spend my time worrying about the "what ifs" although we all know that they are lurking out there...

A dear friend recently sent me this site....it says soooo much. Hope you find it as inspiring as I did!

http://www.inspiringthots.net/movie/best-day.php

Cheers!

Karen

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

Aloha All
we all fight the same beast but in different ways because of different stages and grades; Linda, I questioned my oncologist awhile back about why no CT scans for me; his reply was precisely as you state....elevated CA 125 prior to verified visibility by CT scan; my onc says if the CA 125 bumps up suddenly more than 5 points and I have vague complaints of bloating, abdominal discomfort etc, he'll order a CT scan and go look for the cancer; he's much more interested in vagina cuff paps, which he does every three months; this is the primary spot for the cancer to return (hence the radiation for stage 2,3 & 4)
so jealous you're going to Greece; I have such "itchy" feet to be "living"; we're planning a trip to Europe for early next year; hoping to hit the road for at least 2 months; I could easily be a vagabond with a backpack and not much else; why waste the time left, working!!!!
Marie

california_artist
Posts: 850
Joined: Jan 2009

2009 Official Guidelines from diagnosis to treatment protocols.

Claudia

http://www.nccn.org/professionals/physician_gls/PDF/uterine.pdf

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Thanks for the link for the guidelines. I went to my second opinion today and was confirmed to be Stage 1C, Grade 2. (My first pathology report showed Grade 3). My gyn/ong said no further treatment but the new doctor feels that radiation should be done. I'm going to check this site ASAP since doctors don't seem to be in agreement.

Thanks,
Sue

bonniesue
Posts: 126
Joined: Apr 2009

my mom was grade 1 stage 1c or 2b and she got both brachy X3 and 25 external beam pelvic txs and there were differring opinions and strong differring opinions but she is happy that she did the txs. good luck with your decision. it seems like the consensus is lacking but I guess medicine is not exact.

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