we all need it....
A cancer diagnosis can lead to many challenges for people with cancer and their families. Each person's experience will be different because their cancer, treatment and recovery are different. A man with penile cancer may have concerns about:
· follow‑up after treatment is finished
à It is important to have regular follow‑up visits, especially for the first 5 years after treatment.
à After radiation therapy, it may take several weeks before the penis is completely healed. After complete healing, regular checkups are required.
à Penile reconstruction is rarely done. However, it is sometimes possible to reconstruct the penis after a penectomy by using tissue from another part of the body.
· body image and self‑esteem
à Some men may feel differently about their bodies and themselves, especially after having surgery for penile cancer or if sexual function is affected.
à After a total penectomy, a new opening has to be made between the anus and scrotum so that urine can be passed. In this case, the man must urinate sitting down.
à Radiation therapy can occasionally cause the opening of the urethra to narrow and make it difficult to urinate. This may require periodic stretching (dilation).
à A man may develop swelling of the legs when lymph nodes in the groin or pelvis are removed.
à Although many men continue to have strong, supportive relationships and a satisfying sex life after penile cancer, penile cancer and its treatment can significantly impact some men's sex life.
Since Penile Cancer is such a topic one may shy away from in reaching out or talking about, you must remember that support at this time is critical.
Some of the places/things we found beneficial are listed below.....
à GOOGLE We scoured the internet searching in Google for anything we could find. It was very helpful. Only thing is, there wasn't much Canadian content.
à MDJunction People Helping People" We found this site after much searching. It is a site that has many facets of which one forum is for Penile Cancer. Having the opportunity to share an hear others stories helps immensely. Make sure to check out their many sections; we found the lymphademia section helpful as well. http://mdjunction.com/penile-cancer
à Canadian Cancer Society We looked here, but Penile Cancer wasn't listed, and at the time felt timid to ask for that information not seen. After my husband died, I emailed for it, of which I did promptly received info. Please don't hesitate in asking for any info. Everything is important to get your hands on at the time. http://www.cancer.ca/
· Books & Pamphlets
à IN HOSPITAL There are many pamphlets available on different subjects, grab them when you can. You may not feel like reading when you see them, but when ready you will have them. One thing we wished the Doctors/Nurses would have done more of. Not much registers at times in these circumstances, and it helps in having something that one can read later; in answering questions or when your mind is recollecting things that were said.
à THE HEALING CIRCLE by Dr Rob Rutledge ,MD and Timothy Walker, PhD
This is a book that we read and found very helpful in our journey. I would read to my husband in times when concentration wasn't best.
Hearing others stories helped us both. Dr Rutledge was Curtis' radiologist. http://healingandcancer.org/
à We found it so helpful after Curtis' lymph node dissection. Learning massage & what you can do to help your condition aids in better quality of life. It was only through the therapist after his heart attack that a nurse followed through and got him set up for this. Something the doctor we felt should have made sure was done post op.
· Health care professionals
à Ask questions, I cannot stress more. One has to take their own health into their own hands and push to find answers. There are many caring health care professionals out there that are valuable in helping you.
· Palliative Care
à Although palliative care isn't brought in on things until deemed terminal and and one is in need of it; remember that it is there. Quality of life and pain management is of utmost importance and the palliative care team are experts in this area.
à In the Truro area, we are fortunate to have Hospice; "The Colchester East Hants Hospice Society".
They provide care and support to families as they face serious illness, death & grief. Hospice volunteers & professionals work closely with the Palliative Care team under a philosophy of care that values quality of life until death and putting the patient at the center and in control of their life and care. http://www.cehhospice.org/
· Family & Friends
à At a time when one has cancer, you need the support of your family and friends surrounding you. Let them help you, in a time you need it most.