Q. My son's partner was recently diagnosed with pancreatic cancer and the prognosis is not good. He is very much part of our family. Our son looks very stressed and sad and sometimes is irritable and short with me, which is very unlike him. We have talked to him about getting some help but he says no one will understand because his partner is a man. What can we do?
Your son and son-in-law are both very fortunate to have your support. People in even the most devoted and long-standing gay relationships may not get the same degree of social recognition and support as straight couples. Coping with a loved one’s cancer diagnosis can be a difficult experience and is compounded when one is the primary caregiver, as it sounds like your son may be. With much of the focus on the person with cancer, the needs of caregivers can be unintentionally overlooked and this dynamic is even more likely to be present in gay relationships. Your son is having a very normal reaction to a difficult circumstance, but I feel that the emotional changes you describe could increase without professional support. It is not unusual for gay people to be concerned about being rejected or misunderstood, but there are ways to help your son connect to mental health professionals who are sensitive and open. You can contact us and speak with an oncology social worker for support and referrals to local resources.
Another point gay partners need to consider when faced with a cancer is ensuring that certain rights are addressed and attended to proactively. Gay partners have encountered barriers to areas that others may take for granted such as hospital visitations and medical decisions. Some states address concerns such as these by recognizing domestic partnerships, but there are other measures that can provide certain protections such as having your son-in-law prepare a health care proxy, living will, or power of attorney. These documents will help facilitate communication with health care providers. To locate free legal services to help with these protections, please visit http://www.lawhelp.org.
Although you write out of concern for your son, a cancer diagnosis impacts the entire family and I hope you won’t ignore your own need for support. CancerCare services include telephone and online support groups for people with cancer and their loved ones and we also offer a number of publications.
Q. I've been recently diagnosed with pancreatic cancer and want to know if the back pain I am experiencing worsens over time? How can I manage it?
Unfortunately, pain is very common with a diagnosis of pancreatic cancer. The good news is that often the pain lessens as the chemotherapy and/or radiation works to shrink the tumor. Speak with your oncologist or radiologist about how to best manage your pain. There are now a variety of pain medications that can lessen your pain without harsh side effects.
Prepare for the discussion with your doctor by keeping track of your pain by writing down:
- When and where you experience pain
- What is the intensity of your pain (use a scale of 1 to 10, or verbal scale of mild, moderate, severe)
- Does anything make your pain worse?
- Does anything relieve your pain?
- How is pain affecting your everyday life?
Because pain can be difficult to describe, it might be helpful to have friends or family share their assessments as well. It’s always a good idea to bring someone with you to any appointment; another set of ears can help reduce confusion. I recommend that you bring a list of questions to the appointment and have someone write down the doctor’s responses. People sometimes even bring a recording device – just make sure to ask the doctor for permission.
For more information read our publications, Controlling Cancer Pain: What You Need to Know to Get Relief, Communicating With Your Health Care Team, and “Opening the Door to Effective Pain Management”.
Visit the American Pain Foundation for information and resources to locate a pain specialist. They also offer an online community, PainAid. And finally, the American Pain Society offers useful information.
Q. My husband was recently diagnosed with pancreatic cancer and I'm confused and frightened by all the information I'm finding on the internet. Can you help?
After being diagnosed with pancreatic cancer, one is often faced with numerous questions and decisions to make in a short amount of time. While pancreatic cancer can be a difficult diagnosis, much progress has been made. Doctors have established a standard of care protocol for people able to have surgery (known as the Whipple Procedure) as well as for those for whom surgery is not an option.
There is an overwhelming amount of information on the internet and I recommend these reputable resources:
The Pancreatic Cancer Action Network (PanCAN) is an organization that provides information about treatment options, specialists, clinical trials, support groups, diet and nutrition. They work to increase funding for research and awareness of pancreatic cancer.
The Hirshberg Foundation for Pancreatic Research and the National Cancer Institute’s Cancer can provide up-to-date diagnosis and treatment information. NCI’s also offers, How To Evaluate Health Information on the Internet.
CancerCare’s Connect Education Workshop, Medical Update on Pancreatic Cancer and booklets, Medical Update on Pancreatic Cancer and Pancreatic Cancer: Latest Cancer Research and Treatments (Highlights from ASCO 2010) are good resources as well.
Q. I was diagnosed last fall with Stage 2 pancreatic cancer. The survival rates are not great, but I am quite hopeful. My 18-year-old daughter, however, has told me that she cannot be hopeful because she can't handle being let down if I die. While this makes sense to me, what can I do to help her?
Everyone responds differently to a cancer diagnosis — some people are optimistic, and others, like your daughter, are afraid to be hopeful. Your ability to respect your daughter’s views and understand the difficulty she is having with your diagnosis is important. While you may not be able to change her outlook, you can be supportive of her through this challenging situation.
Encourage your daughter to share her thoughts and feelings about your diagnosis with you. What are her fears? Worries? Hopes? Allowing her to express her feelings freely can provide you with the opportunity to talk openly about your situation. You can even start the conversation by sharing your own worries, hopes, and fears with her. Telling her that you, too, have uncertainties will help to validate her feelings and make it easier for her to open up.
Communication is the key for families coping with cancer. By opening up to your daughter, you are showing her that it’s okay to discuss her feelings. The fact that she has expressed her fears about being let down indicates that she feels the two of you have a trusting relationship. It is understandable that you want your daughter to be optimistic; however, your being able to accept her fears gives her permission to share exactly how she is feeling.
Teens often struggle talking with their parents about illness. Look to adult relatives, teachers, and coaches as potential sources of support for your daughter. She may also benefit from talking one-on-one with a counselor. She can call us and speak with an oncology social worker and we can also help her find local support services.
Your daughter might also find helpful resources online that are specifically designed for teens with a parent with cancer, such as Cancer Really Sucks.
For yourself, CancerCare offers a telephone support group for people with pancreatic cancer. This is a safe place to discuss all the concerns and issues that arise from your diagnosis. Please contact us at 1-800-813-HOPE (4673) for more information.
Q. My husband, his mother, and her brother died of pancreatic cancer. My daughter has had breast cancer. I also have two sons, one with Crohn's disease and one with type 2 diabetes. What protocol should we be following?
Pancreatic cancer is often difficult to diagnose. That’s because of where it is located in the body (right in the middle of the body) and the way it often presents (generalized pain either in the belly or the back, right or left side). There is no distinct cause for pancreatic cause but there are findings that certain risk factors increase the likelihood of the disease.
According to the Pancreatic Cancer Action Network (PanCan) strong family history is one of the risk factors for pancreatic cancer as well as a family history of breast cancer and diabetes. Make sure you are detailed and clear with your health care providers when giving your family health history and ask about getting a blood test called CA19-9 as a baseline. When the test is trending upwards, it might mean that there is some pancreatic cancer activity in the body. You might also consider pursuing genetic testing.
Again, it is important for you and your family members to discuss your specific family history (including all illnesses) with your health care providers so that you will know what protocol is best to follow.
Learn more about The Genetics of Pancreatic Cancer from Cancer.Net.