Tom K

Linzy, I just caught up with this thread and I was wondering if you have the option of talking with another doctor about other treatment options. I had cancer in my middle lymph nodes and it was eradicated with concurrent chemo-radiation. In fact there are a lot of people here who had similar diagnosis as yours and are cancer free after receiving this same type of treatment first then having surgery afterwards. I did it in reverse order because my lymph nodes were not discovered until after the surgery. I am glad you decided to receive treatment. But if possible, you should consult with another physician because there are additional treatment options that may extend your life well beyond the 12 months your current physician is prognosticating. There are a lot of people on this board who had stage III cancer and are still here many years later. Good luck to you and I will be praying for you.

I was taking statins for 6 years before I was diagnosed. Of course since I had smoked for 35 years and my real father (I never met him) died of LC at age 45, it may be that my risk was already to high.

Sharon, Welcome. Thank you for joining and sharing your story. When I found this board, what I liked most was that it was real people who had really survived. Since I am less than 2 years post surgery, hearing stories like yours gives me even more hope that this thing can be beaten for the long term. I am sure a lot of others will be inspired as well.

My wife Rina insists on going with me to most of my check-ups. She is a fully involved partner in this fight. At times she has played the role of head coach and other times she has been the cheerleader. We have pretty much discussed everything including my fear of unresolved pain. I don’t know who this quote is from, but it sums up my thoughts about dying. It goes; “I don’t mind dying; I just don’t want to be there when it happens”. Rina knows that if I am in a great deal of pain I would rather be sedated into oblivion than suffering in agony. My kids never wanted to discuss the details, in fact my daughter once told me that I was “superman” in her eyes and she did not want all this cancer talk to destroy that illusion for her. So we never discussed much with them other than telling them the latest test results when the news was good. That is the way they wanted to deal with it, so we respected that and banned cancer from the dinner table. However, my parents are still totally unaware I had cancer. They live in northern PA and can not travel because of their own health problems. My sister passed away 1 year before I was diagnosed and I saw no reason to have my folks worry about me when there was nothing they could do about it. I am in trouble with them for not having been up for a visit in more than 2 years, so we were planning a visit next month for my dads 81st birthday.

These are very personal choices that each of us have to make and there is much to consider. Stage IV cancer is not an immediate death sentence and treatment does not have to dramatically alter your quality of life. There is a school of thought that states one goal of treatment is to prolong life until a cure is found or at least until we can treat cancer as a chronic disease similar to diabetes or even HIV. Good luck to you whichever road you choose.

Thank you all for your kind thoughts, words and prayers to help my family heal from the tragedy of my daughters passing. You probably never met her, but Tracy was a very beautiful little girl (4”10”) with a heart the size of a mountain. She still lived at home and she still called us mommy and daddy. I am told that with time, we will learn to live with this grief. It does help knowing there are friends who care enough to pray for us. Thank you all.

I did not go for the scans that were scheduled for last Friday. Last Thursday evening, I was awakened at 1:30AM to every parent’s nightmare. My daughter Tracy had apparently had a heat stroke and been taken to the hospital. When she arrived at the hospital, her fever was 107. While the medical staff was attempting to cool her down, she had a seizure from which she did not recover. My wife and I buried our little girl today. Even with all that my wonderful wife has endured this week, she is still concerned about me. So, I will be going in for scans this Friday and I expect to have results by Monday. Thank you for your concern and I would appreciate your prayers. http://www.legacy.com/TimesUnion/DeathN ... D=92505904

Welcome Leela, Please do not hesitate to ask questions. A lot of folks here have gone through similar regimes and could share their experiences with you. For me, it was a big help knowing others had already been down this road and told me what to watch out for. I will pray that the doctors are able to help your mom with her SOB.

About a week ago, I noticed a slight bulge along my left rib cage (opposite side of where my cancer was). There is no pain to the bulge. I saw my oncologist today and he could not rule out mets to the rib. But he said, in his experience, mets to the ribs are symptomatic with noticeable pain that interferes with breathing. He may have been trying to reassure me, but he said it is not uncommon for our rib cages to shift a little as we age and this bulge could be a result of that process. He ordered a PET and a CT for Friday. So by Monday I will know what it is or at least what it isn’t. Has anybody experienced a shifting of the rib cage? Is there anybody in the group who has had experience with mets to the ribs and was there always pain associated with it?

Responding to Larry’s post; Was that from the “Wonderful World of Disney”?

Petticoat Junction Hows about.... Give us any chance, we’ll take it. Give us any rule, we’ll break it.

A few months after I finished treatment, I was standing in the lobby of the building I work in and a lady who worked in another building and whom I have worked with occasionally over the years, walked up to me and said, “I heard you died”. I responded by saying, “some people wait their whole life for a straight line like that”. She picked up on my meaning and said she was “glad the rumor was greatly exaggerated”.

I went through a similar treatment regime and it was 4 to 5 months before my RBC returned completely to the normal range. I asked my doctor why it took so long and he said it was not at all unusual to be anemic for several months after treatment completes. He said I should not underestimate the toll treatment had taken on my body and to just let the healing process happen. It does sound like you are doing pretty good. It was about 2 months after treatment completed before my esophagus had even healed enough to eat regular food again.

Robin, It is very possible that this is a false alarm. I had a CT, MRI and a PET that all indicated mets to the liver. One surgeon and two radiologists were convinced it was cancer. My oncologist insisted on a biopsy, which required surgery because of the location. The biopsy identified the growths as inflamed fatty tissue. It is a year later and those growths are still on my liver but are no longer inflamed. The scans do not always give the full story. Even if the PET indicates higher metabolic activity, ask your oncologist about the possibility of a biopsy.

Thanks for sharing the good news. Have fun in CA.

Congratulations Carol and thank you for all the advice and for being one of my role models.

Hi Alex and welcome. Please don’t hesitate to ask questions.

Yes, it has happened at my pulmonologist’s office. Now, I call a few days before and ask his staff if they have the latest image reports from the imaging center. I also get my own copies of all imaging reports so if needed, I could also bring the reports with me to the doctors office.

If your husband couldn’t remember the “in sickness and in health” part of the oath, he probably would have forgotten a lot of other promises. Your cancer may have saved you from a lot of heartache down the road. Welcome to the community.

Cancer was found in my lymph nodes after the surgery. So I was treated with concurrent chemo/radiation and then consolidation chemo. I finished all the treatments a year ago and I am still here with NED. I work with a guy who had a similar situation and his was also LLL. He underwent similar treatments and has been NED for 3.5 years.

Teri, Thank you for the update. Please tell Bill I think of him often and I miss his thought provoking posts.

About 6 weeks after surgery, I was also diagnosed with cancer in the lymph nodes in the center of the chest. I was devastated by this new diagnosis. I was also offered aggressive treatment similar to your MILs and was told it was for curative intent. When my doctor told me it could still be cured, I felt a whole lot better and became an active participant in the fight. The treatments are not easy. The radiation to the center of the chest caused serious esophagusitous and combined with the chemo, it made eating a real chore for many weeks. I was anemic and exhausted. BUT, knowing that I was fighting for my life and that I could realy win this fight made me want to continue with the treatments. In fact I was enthusiastic about going to chemo and radiation. I distinctly remember being very, very disappointed on the one occasion my chemo was canceled (because I was so anemic). The point of my story is that somebody should ask your MILs oncologist what is the intent of the treatment. I am sure, once she hears they are going for a cure, she will be much more engaged. If her doctor does not indicate they are seeking a cure, get a new doctor. Please encourage your MIL to come to this site and read the stories of other survivors. I found that reading all the stories of the many real people here that have won the fight was inspirational and immensely encouraging.

Before you go, please let me add my voice to the chorus of people thanking you for all you have done for us. I pray you have health, peace and good fortune in all your endeavors.

Hi Carol, I have been on vacation and I’m catching up on all the posts. Congratulations on the good news. I have had that banana flavored barium drink and it is indeed awful.

Hi Richard, Welcome to the group. First off, that whole thing about cancer always returning is a myth (I am banking on it not being true). Surgery gives you the best chance for a permanent cure. Don’t concern yourself with the statistics, most are aged and do not take in account results from newer therapies or they are skewed by other factors. There are lots of people on this site that have been cancer free for many years. You have already received lots of god advice on how to handle the surgery and follow treatment. The only other things I might add is that I found having an epidural for a few days after surgery made it more bearable and I was most comfortable sleeping in a recliner for the first 10 days or so. As you progress along the journey you may have lots of concerns. Please do not hesitate to ask questions. For me, it helped a lot knowing others in this group had had similar experiences.