Advanced Prostate Cancer
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Devastated - new here - needing information -

I hope it is ok that I am not a man posting to this group. My beautiful husband was diagnosed with prostate cancer 15 years ago. He was only 50 at the time. We decided that surgery was the best option because we did not want the dark cloud of cancer hanging over our heads for the next 30 years. He had the surgery and for 15 years all of the follow up psa tests came back clean. The most recent was only 3 months ago.

Thurs. evening I took him to the emergency room for what we thought was lower back pain from lifting a heavy object. 18 hours, 1 CT scan, 1 MRI, blood work and a full body xray later, we are told that his prostate cancer has metasticized to his pelvis and one rib. Our initial reponse was "What prostate cancer?"

We are numb with shock, unable to understand how this can be possible, and feeling like we went in for a back ache and came home with a death sentence. We are supposed to see an oncologist on Monday, but right now, we have very little faith in doctors in general. We feel like we have been lied to for a decade and a half. I have only just started to look online for information, and this was the first site that popped up. Please, if there is someone out there who has information to share on how my sweet, wonderful husband can win this ugly battle, please respond. He is only 64, and we thought we had so many more wonderful years ahead. Thank you for any help you can give,

Cynthia

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Hi Cynthia,

There are many Intelligent, kind and caring people on this site and you will get many answers. I am one of the wives and couldn't do this without all of them. I myself believe that your husband has many many years left once you find the correct treatment. Not to worry many answers will come.

P. S. My husband had 5 mets in different places after his surgery...a few years after his surgery and he had radiation 2 times now in different years-and liquid radiation and also triple blockade HRT and he was in remission for about 3 or 4 years.

Most sincere,

Jackie

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Thank you Jackie.

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Hi Cynthia. Can I just ask which country you live in?

I am thinking of you. You will get a lot of great advice from this website.

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I live in the US. California to be exact.

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I also recommend going to a support group if you can make it. Doctors and hospitals specialize in treating the disease, but they typically don't have much to offer in terms of the human and emotional sides of the disease. Face to face support groups help in so many ways. In my opinion, there's no substitute for the help and support you get from people who are in the same situation as you. They are your brothers and sisters in this fight. They want to help you because they know what you are going through.

Not sure where you are in California, but in northern California where I am, we have quite a few groups. If you are in the northern part of state I can provide you a list if you would like.

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Prostate Ongology Specialist in Marina Del Ray is a leader in the Field, Dr Shotlz and Dr Lam are very forward thinkers , If I was within a thousand miles I would be there, PCRI has a free helpline , PCRI (Prostate Cancer research Institute) which they started has a free helpline, Men to Dr Sholtz and Lam to manage thier APC from all over the world, They are very good!

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I second your recommendation, Dan. I live inSanta Monica, CA, and Drs Sholtz, Lam and Turner have been managing my treatment since January, 2015. Cynthia, if you are in SoCal, they are worth traveling to. I'm in treatment with two physicians who travel a long way to see them: one from Las Vegas and one from Phoenix. Prostate Oncology Specialists deserve their reputation.

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We are fortunate to have a dr sholtz as well as Myers patient. For those of us who cant get excellent doctors, any info as to there treatment protocol and school of thought since they are on the cutting edge would be helpful to all of us. Thank you very much. Hope these docs keep all of you around a long time. The very best. Rocco

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I agree that finding the best doctor you can is important.

I have never been treated by Drs Sholtz or Lam, but I've heard great things about them. Another doctor in private practice in California with a great reputation is Dr. Robert Liebowitz in Los Angeles.

California also has a ton of top cancer hospitals, more than any other state. Here's a list of California research hospitals recommended by the National Cancer Institute:

cancer.gov/research/nci-rol...

You can find doctors at these places that are up on the latest research.

Ask your doctor about combination therapies and about different kinds of hormone therapy, for example Firmagon or Zytiga.

Best of luck.

Alan

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I had a similar experience, except that I still have my prostate and never had any other symptoms except pain in various places in my body, mainly the lower back. I too went in with back pain and after seeing my bone scan lit up like a christmas tree, I figured that was it for me. My PSA was 400 and Alk Phos at 600. I had bone mets all over my skeleton and so much pain I could hardly get up out of a chair.

During my first meeting with my MO, she was very optimistic about my recovery with treatment. She referred to it as "managing" not treating. I was equally shocked by her response as I was to my initial diagnosis. She told me many of my bones mets would actually heal and I would likely get a good response to Primary Andogren Deprivation Therapy. In case you aren't familiar, that's where you get a shot which shuts down testosterone production and provided your prostate cancer is hormone sensitive (almost all are) it quickly and effectively kills the cancer. Most patients get an immediate and strong positive response to this treatment. In my case, my PSA dropped to 12 in one month and I was completely pain free. Then I started early Docetaxel chemotherapy which hits the cancer with a double whammy, killing any cancer cells which might not be hormone sensitive. So now, after 4 months, my PSA is .2 and Alk Phos is in the normal range for the first time since diagnosis.

As grim as it seems, stage 4 prostate cancer is in most cases very treatable. I was so happy to find this out after experiencing it myself. Don't give up hope, your husband could have many, many years left.

Keep us posted on your husband's progress. We're all pulling for him.

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Just to add a bit of advice. Lupron/Eligard is the usual ADT prescribed. I've heard (and I insisted on it myself) that it is wise to take casodex for a week or two before any ADT shot -- it prevents a PSA 'flare' when starting ADT. Best of luck to you Cynthia and your husband.

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That nurse was right on. Ithink thats where this disease is going being treated as a chronic disease like diabetes. Next best thing to a cure. The best. Rocco

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Welcome, Cynthia. I trust you and your husband still have years together. I'm 54. I've had bone mets visible on scans for seven years. A good medical oncologist who you trust and who is experienced and knowledgeable will help a lot. I agree with Gregg57's comments. This is not the end. It's a new beginning. Hold each other and go attack this beast together!

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Thank you so much for the encouragement. You are right, this is a beast and it's a battle we are determined to win.

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Welcome Cynthia, I concur with the excellent advice of both Yost and Gregg. I am impressed with the psa being undetectable for 15 years. That being said I was diagnosed in 2006 inoperable with widespread metastatic disease to bone I was 49 , I am 61 now. You have many options ahead to treat this like a chronic disease there has been so much new in the last decade and things are changing fast. that being said I say keep the meeting with the Medical Oncologist, He will likely suggest Lupron or zolodex or another from of that testosterone reducing pharmaceutical, we have all been on it, and it works very well for most Men. Is it a long way for you to travel to LA, There are many excellent centers with prostate Specialist, I like Prostate Oncology Specialist in LA, with Dr Sholtz and Lam. , and in SF I know there is Dr. Ryan and Dr Small. at UCSF. I wish you the best and keep us posted

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Hi, Cynthia. Sure it is OK for you to join this group in dealing with your husband's cancer. You are both in this together. You have my deep sympathy for the shock you are feeling right now. We've all been there and it is awful. You've already got the bad news: cancers (and each one is different) are sneaky bastards. Your challenge now and in the days ahead is dealing Day by day with uncertainty. The good news is that your husband's diagnosis isn't a death sentence. As you read through the stories on this forum, you'll see that there are a lot of treatments available and that many of us are enjoying rich and fulfilling lives in spite of troublesome treatments and sometimes unpleasant side effects. I'm urging you and your husband not to give up. Make sure you have docs you trust and then accept the treatments they recommend. And when you are able to breathe again remember that worry and panic can't prolong a life, but enjoying the time you have can make all the difference. Please stay in touch

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Hi Cynthia, my husband had a Radical Prostatectomy in 2005, and after two and a half years the cancer came back. Bob then had 33 Radiation treatments, which didn't work, Bob then went onto intermittent ADT. Whilst on the rest from ADT, it mestatasized to his spine (5) lesions. Went back onto ADT and Finasteride, and lesions became inactive. Had a rest from ADT again, but stayed on a maintenance dose of Finasteride. The PC is now in 8 Lymph nodes, so we decided with the Oncologist for Bob to start again on triple ADT. Lucrin injection 3 monthly, Casodex 50mg & Avodart 500mg daily. First PSA after starting triple ADT was undetectable. PC has been a chronic disease for Bob for 12 years, and it keeps going into remission, so don't lose hope. The fact that your husband's PC has been dormant for 15 years is good, and you have lots of options to get it into remission. It's good to learn as much as you can about the disease and the options, also have an Oncologist that is willing to work with you as a team, and try different options. God bless you and your husband.

Lee

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Hi Cynthia.

I am writing to you as the wife of a wonderful man who has been battling this this disease of 14 years. I have only been with him on this journey for the past 8 years. And I, too, am hoping that we will have many more wonderful years together. My husband will start Chemotherapy tomorrow.

I can understand that you are shocked. But this is not a life-sentence. There are lots of treatment options out there and I am sure if you have a good oncologist he/she will tell you all about them.

Keep us posted.

Mel.

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Mel,

I think if I were unmarried, and had this crap, a woman wouldn't want to get involved. You must be an angel. Or at least some reasonable facsimile of one.

Joe

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Hi Cynthia,

First be assured that you and your wonderful husband will certainly win this battle. All of us are here to support you. Many of our warriors have similar stories despite having even worse pathological conditions at diagnosis. Your husband has been fortunate enough to have lived 15 fruitful years with a prostate cancer! You have put it very beautifully and quite innocently that you asked "What cancer?" when you herd of some symptoms of the cancer recurrence after 15 long years which is quite a possibility for all of us. Even for 20 years the prostate cancer can be in remission and may come back again. One may be blissfully ignorant about this fact but that is the bitter truth. When cancer comes back again it is not the confirmation of a death sentence. It will be relatively easier to manage the decease since you have not been troubled for such a long period. You have started with the gold standard treatment Surgery - Prostatectomy with a significant survival result exceeding 15 years. ( I don't know whether your doctors have told you that the cancer has been cured with the surgery alone! ). I am very much interested in knowing more about the pathology of your husband's PCa at diagnosis. PSA at the start, Gleason Score, cancer staging, any other treatments taken in addition to surgery. Didn't you check his PSA at least once a year?

Microscopic cancer cells possibly remaining in our body even after a surgery can start growing even after many many years and begin to metastatize - more easily to bones, then to lymph nodes and also to other parts of the body such as lungs and the liver. If you act fast now you can stop all these, there are enough treatment protocols to put him back to remission. It is very important to get hold of a reliable very good Oncologist who is specializing in treating prostate cancer and who is also compassionate enough to answer your questions.

Get some more knowledge about this subject. Go ahead and put your questions at anytime to our forum, you have enough brothers and also sisters ( without the prostate gland! ) who are waiting to help you and your husband.

Cheers

Sisira

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Cynthia,

Your husband does have many more wonderful years left. I could tell my story but reading the comments above, it's been told. Many,many men on this site have been living with mets on their bones for a decade or more and continue to live a good life. Yes, it's a shock but with todays cancer treatment and more treatments on the way, start planning your 2027 vacation while the prices are still low. Your husband is 64? I would begin to worry when he is 80.

Remember one thing, this stuff can be killed, my psa was once 850, with mets, lymph node involvement. Nearly three years later my psa is nowhere to be found and I'm just getting started on a long line of effective drugs. Knowledge is key along with a world class oncologist to help guide you two. Read, research, it will enable you to take control of the many years of treatment that are in front your husband.

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Very encouraging!Thank!

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Cynthia, I am so sorry to hear this. You are absolutely welcome here. This is a place where people living with PCa and their loved ones come together to hold each other up. My wife is my rock, without whom this road would have been a lot bumpier.

Joy shared is doubled, sorrow shared is halved.

I had a RP in March of 2016, and so far, my PSAs have been undetectable. While my urologist gave me good odds for staying cancer free for at least 5 years, there are no guarantees. What happened to your husband has happened to many men, and could also happen to me.

How do we cope? For me, it's about reminding myself every day why I want to continue living, and thanking the universe every single day for this day. When faced with a potentially deadly illness, we tend to focus only on that while ignoring all the other things out there that could kill us. That's simply human nature.

By all means, get the best medical treatment you can, but don't give up hope. Many men out there have gone through this and have enjoyed many more years of life after getting news like yours.

Fight like hell, and while you are busy improving and prolonging your life, don't forget to live it!

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Be thankful you've had that much time without problems - my husband's prostrate cancer happened in 2012 - I pray my husband Mike will have 15 years. He's been thru hell. Taken radiation, chemo, Zytiga, xtandi, provenge-too much stuff-none has worked so far. He's 69. Your husbands appears to be slow growing-that's a good thing-I wish you the best-take care-keep us posted

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Sorry for the hell part , that we all share at times..Thanks for your strength and sticking by your love!

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I too am a wife of a Stage IV cancer patient, diagnosed at stage iv 3+ years ago, with bone mets in the spine and pelvis. This site has been really helpful to me, although I just discovered it a few months ago. Wish I'd seen it earlier.

The best thing we did (others have mentioned this) is to go see an expert in Prostate Cancer at a cancer research center. There are some SoCal recommendations here. If you are closer to San Francisco, we highly recommend Dr. Eric Small at UCSF. He does not "treat" cancer patients on a regular basis but he provides insight and overview on the details --- the "information" you want. We live in Hawai`i and we really wanted some outside confirmation about what was going on. As someone else noted, Stage IV is considered "palliative" treatment (which does not mean terminal/hospice ready by any means). It just means the cancer will not be "cured" and will very likely not go into remission. (It did take us a while to wrap our heads around this one!!) I call it "suspending the progression" and when we are succeeding at that, we're pretty happy. And mostly we have. The first year was rough, and we went through a lot of treatments fairly rapidly. My husband started at stage iv with advanced metastasis (only bone) and apparently a very hot tumor. In the end, although the individual treatments (Casodex, Lupron, CHAARTED/early taxotere chemo, Provenge/immunotherapy, Xofigo (RA223) - all within the first 18 months) didn't seem to make a big or long-lasting difference at the time of each treatment, we think they accumulated to a positive effect. Husband has now been on Xtandi/enzalutamide for almost 2 years, and is doing well, although he has started to have progression into lymph nodes. Also some nagging spinal tumor which he will have zapped with short-term radiation (5x). He did this once before.

He retired because we could manage it and get social security and get the early IRA withdrawal fees waived. Even though he is only in his early 50's, we are treating this time as his "retirement" while he can still enjoy being retired (rather than working until he felt too crappy to work). Stage IV PC is an "automatic" condition for social security. He has been enjoying life, working a little bit part-time (less stress), volunteering, riding his bike, swimming, hiking and playing with our dogs. We both think he is doing as well as he is (in part) because he retired. So consider this to enjoy the time you have. We all think we have a long time, but there are lots of things that can happen to mess that up, so live now and enjoy as much as you can.

Best wishes and warm thoughts to you as the two of you navigate this difficult time.

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So sorry that your husband is faced with a decision that I faced over thirteen years ago. The approach that I undertook was atypical for most. At the time, 57, and facing a two to five year death sentence, I opted for very aggressive treatment. Within two months of a Dx of metastatic disease in L2 & T3, I entered a six month chemo - hormonal trial with a Medical Oncologist who specialized in Prostate Cancer and its' Research while a Professor at a major medical school. Six years later I stopped ADT and at age 70 remain undetectable. For five years, I have been taking 4 mg of testosterone gel twice a week.

After reading posts on this group and others, I know that not all chemo protocols are equal. Below is what I received:

Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. After completion of 3 courses of chemotherapy, hormone management [medical castration plus casodex (at the completion of chemotherapy)] is initiated at the start of chemotherapy....." During the six months, I took orally 30 mg of Prednisone daily (20 mg and 12 hours later another 10 mg). I reason as described to me is that Prednisone has PCa cell killing properties. In fact, all of the medications are known through research to kill PCa cells. BTW, in my case I stopped casodex nine months after the conclusion of the six month infusion period.

I am not the only exception to the norm and consequently, do not believe that Stage 4 treatment is only palliative in nature and that there is no remission nor cure. I could be wrong, but its been one hell of a ride enjoying life thus far.

Keep kicking the bastard,

Gourd Dancer

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WOW! That is SO Awesome!!!

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Thanks. I don't get this business about palliative treatment either. What the hell does that mean? I get that we have an incurable disease, but so does everyone else. It's called life. So I guess that anyone who is going to die someday in the future is just being palliated in the interim?

All of life is palliation...

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It's all palliative!!!! For us....

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We all are in the same boat. Everyone alive today is trying to survive. Some have more they need in order to do that than others. That's about the only difference.

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This might sound weird to you ,but your story inspires hope in me ..I'm 56 & dealing with APC for 2yrs ,1 yr w/no visible signs .The fact that remission for 15 yrs was possible is optimistic for those of us just starting this journey..Now on the flip side it must be devastating to have this current return, So to speak..This is a major fear for me as to what can possibly go bad for us in the future..although I have no signs presently...I'm told that APC will be the death of me..Fortunate for your husband not to have been under ADT or other treatments of which now I believe will be offered to him..The blessing I see in you words is living with the love of such a wonderful woman as yourself..If this is the first site that you be seen you have good luck.So much compassion and real time experience in these pages that I don't see many questions going unanswered. As our friend joe_kam has said" you must be an angel". I agree.Im lucky Enough to have the same type of love from my wife as you clearly have for your husband..You made the correct decisions 15 yrs ago and you will again this round. He needs you more than ever..Thank god he has you in his life..With you he is truly enriched..It is not an immediate death sentence at all ..Treatments and side effects are tolerated well by some .others not so much..no one will say that it's easy..For sure it's not..Your love can conquer all..I'm pulling for him and you..Thank you for sharing...continue please, it should be beneficial to all of us.

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Such beautiful words Lulu ♡

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When the"Docs" give good or bad news , doesn't it affect us in a powerful way? Words can heal ,And we know that love can heal.Thank you for your words of compassion and love!

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Yes it sure does and Yes it sure can ♡ :)

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Our hearts go out to all spouses and care givers.without thier love we couldn’t exist....🌵

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Hi Cynthia,

Your husband is still young. I'd take the glass half-full approach. His cancer is probably not super-aggressive, so knock it out again and perhaps he'll get another 15 years.

You bring up an important point. For many of us prostate cancer is like the old roach motel commercial - it checks in but it will never check out. Active surveillance must be part of our lives no matter how "cured" anyone thinks we are.

Thank you for reminding us of this.

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That sucker checks in and doesn't check out , until we check out, with him .A friend to the end..Rather selfish friend.I prefer a dog as a loyal companion.I wish to cure this sick child that I so aptly raised inside me for so long . But he's a real S.O.B....

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I'm almost embarassed to make this post. First I want to thank you all for the encouragement that you have given my husband and I. Unfortunately, after more pathology, it has been determined that my husband has stage IV lung cancer. It has metastisized to bone all thru his pelvis and spine, and he shows a large spot on his right lung, lymph nodes and spots on his liver too.

While I was terrified of the prospect of prostate cancer, I now wish that had been the case, as the prognosis for the lung cancer is much more grim. I feel like I should apologize for bothering you all with an incorrect diagnosis, but in a selfish way, I am glad that I posted, because so many of you have shown me your strength and tenacity in fighting your battles, and regardless of the type of cancer, that kind of fortitude is bound to come in handy.

My best wishes to each of you, and thank you again. I hope there is a group out there for lung cancer half as caring as this group!

Cynthia

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Thanks for the update, Cynthia. You probably would want to get your own copy of all the technical details of the pathology report that is the basis of this revised lung cancer diagnosis.

It may be helpful for you to review the results of this Google search:

"how to read a lung cancer pathology report"

google.com/?gws_rd=ssl#q=ho...

Then ask the doctor to explain any parts of it you may not understand.

I hope you find some good Lung Cancer Support Group connections soon.

inspire.com/groups/american...

lung.org/

Ask your local doctors and hospitals if they have references to local face-to-face Cancer Support Groups, too. They can be very, very helpful for both patients and spouses, particularly if they may be facilitated by someone with years of local experience with advanced cancer patients and facilities, and doctors, in the local area.

Lung cancer that is already so widely metastatic, and also in the liver, usually has a poor prognosis, based on older treatments. You might want to ask early about possible genetic testing of tissue samples, and possible matches to clinical trials.

In parallel, it might be a good time to make a review of the usual end-of-life and estate planning issues that are always in the background for any family as people age, or become ill. Some of these links can be family conversation starters, ahead of need.

passing-on.org/

nhpco.org/about/hospice-care

pbs.org/wgbh/frontline/film...

Just some thoughts,

We wish you both well, Cynthia.

Charles

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Thank you Charles. We are already looking into immunotherapy and genome testing. Got a copy of the pathology report, so your link will be helpful in understanding it. Our oncologist is affiliated to UCLA and is looking for clinical trials for us also. We will try any reasonable suggestion, as we really want to get a good result. I have read the statistics, and they are really bad, but we have to hang on and have a positive attitude as long as we can. I learned that from the kind folks in this forum. And yes, its time to look at the estate planning. We will have to squeeze it in between daily radiation and weekly chemo!

Thanks again for your post.

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💖

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How are you and your precious husband doing Cynthia?

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Just because there are complications doesnt mean that life is over.. I can t even imagine the hard phycology of being clear for so long and then *bam* its back. Sorry for this set back . Unfortunately APC can hide ..For us newbies 15 without signs would be a godsend. As it was for your husband.You should have many many loving years together to enjoy life..64 is young enough to fight this and push it away. With you by his side he is far from done..Your love will lead him through once again. God bless!

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