Guest Post by David Haas

Cancer Survivor Networks: Connecting with Others

When you have been diagnosed with cancer, it is easy to feel alone and isolated. You don't need to feel alone; there is hope. Other cancer survivors are ready and willing to help you. All you must do is seek out a support network either online or through a local group with regular onsite meetings.

Cancer survivor networks allow you the opportunity to share your innermost feelings about cancer and treatment with others who understand what you are going through. An article by the Mayo Clinic titled "Support groups: Make connections, get help," states that cancer support networks often have other benefits that you might not expected, such as providing a source of information about cancer and available treatments and an opportunity to learn tips and information from other cancer survivors who are further along in their treatment.

Online meetings have several advantages. For example, if you are undergoing treatment and you aren't feeling well enough to go out, you can attend meetings or participate in forums online. Many of the online meetings are conducted via a chat room and you do not need sophisticated technology to participate. The forums allow you to post questions and read the answers posted by other cancer patients. Online support groups have the additional benefit of allowing you to find a group of cancer survivors who suffer from the same illness that you have, for example, mesothelioma or colon cancer. In addition, many of these forums even have a doctor or nurse available to answer basic questions about treatment or recovery.

If you aren't technologically savvy or if you prefer to connect with people on a more personal level, you can participate in face-to-face meetings. During these meetings you can share experiences with real cancer survivors in your community. Many survivors find that the emotional support and feeling of belonging that they experience in a face-to-face support group makes recovery more tolerable.

If you are interested in finding a cancer survivor network, ask your doctor or nurse for a list of groups near you. Your local telephone book or newspaper might provide additional information as well. If you prefer an online group, search for a group or visit the website of the national foundation for cancer or for your particular type of cancer. You have nothing to lose by reaching out to others, but you have everything to gain. 

Thank you.

And I heard the voice of the Lord, saying, Whom shall I send, and who will go for us? Then I said, Here am I; send me.
Isaiah 6:8


To all those who served, thank you.

A Journal Entry From 2006

Two days after Christmas, in 2006, I started keeping a journal.  Here is an excerpt from that day:

Story so far--PSA rising after surgery. Diagnosed February 2006, surgery in April.  First PSA undetectable, second 0.2.  December PSA 0.6.  I think I'm in big trouble.  Meeting with a radiation oncologist and a medical oncologist January 9.  I will try radiation, I think, even though the cancer is probably distant rather than local, since PSA rose so quickly.  I imagine hormones and chemo are in the works before long.  Worried about how long I will live, but more importantly, what that life will be like, with all the effects hormone therapy causes.  Lots of thoughts passing through my mind, so figured it's a good time to start journaling.  Waking up at 4 am with anxiety, but doing okay during the day.  Read a part of Walsh's book yesterday--a study where a subset of men had PSA rise within one year.  Only 1 of 16 got any benefit (from radiation) and his PSA started to rise three years later. Worried about _____ growing up without me.  Everything is different now.  Should I bother putting anything into my career?  Should _______and I plan a romantic trip now, in case HT is going to destroy that part of life?  Should I start getting into pictures and videotapes more now so that in the future, ____________ can see me as I was, not sick?  Should we bank some family experiences now?  I think I have a 74% chance of surviving three years but only a 15% chance of ten years.  That's a pessimistic view (looking at "Risk of Prostate Cancer-Specific Mortality etc." from JAMA 2005; 294: 433-439.  

It was actually an overly pessimistic view.  I had thought, based on what my surgeon told me and the yellow Post-It attached to the record he sent the radiation oncologist, that my surgical margins were negative.  But when the oncologist read the file, he found that actually, my margins were positive.  Positive surgical margins mean that cancer was present right up to the very cut edge of the removed tissue, meaning that it's likely some bits of cancer were left behind in the region of the prostate.  And those cancerous leftovers were a likely culprit for my rising PSA.  Since their location could be approximated (the prostate "bed", or fossa), radiation was more likely to effect a cure, than if the margins had been negative.

I had salvage radiation in early 2007.  Within a few months, my PSA fell back below 0.1, where it has remained.  Am I cured?  It's too soon to tell.  It may always be too soon to tell.  But I'll take what I can get.