Our ability to treat cancer is ever increasing and the number of young adults who are able to walk away and undertake something that resembles a fairly 'normal' life is high. But it is not without it's challenges.
Did you know that every treatment option offered, whether chemotherapy, radiation or surgery has the potential to leave you with long-term and late term effects? Not everyone will experience these challenges but many will and the best thing we can do is educate ourselves about the potential complications from our particular treatment regime so that if something does occur, we will be able to catch it early.
There's a strong movement at the moment towards everything positive and some people believe that knowing the potential long-term effects of our treatment is a focus on the negative.
Someone who acknowledges the reality of their treatment, arms themselves with knowledge and acts swiftly to ensure that anything that comes up is caught early, is making the most positive move available. Empower yourself to value your health and your quality of life.
Sticking your head in the sand isn't being positive. It's a coping mechanism, it even has a place where it can be a valuable tool, but don't mistake ignoring something with being positive about it.
While you're undergoing treatment, your oncology team follows you closely and monitors your bodies ability to cope. After treatment you will likely be followed for up to 5 years by your oncology team, but after that point most people are sent back out to their general health care providers and they are not equipped with the detailed knowledge of late effects like your oncology team is. So what's a long term cancer survivor to do?
We've come up with a list of suggestions to get you headed in the right direction.
1. If you are still under the care of your oncology team, ask them to make a list for you that you can give to your GP to put on your medical files and keep a copy for yourself. Ask that they have a honest discussion with you about your late effects.
2. If you're finding that your oncologist wants to gloss over this not so glam area of oncology then don't panic, ask them for a treatment summery. Armed with that you can visit the LiveStrong Care Plan where you can type in what treatment you have undertaken and it will spit out a care plan for you. This is a fantastic resource and empowers young survivors to take charge of their health as they move forward into their future. It is powered by Penn Medicines OncoLink.
3. Once you are armed with this information, move forward with it. People assume that if there is an ongoing risk to their health they will be told about it and treated accordingly. Unfortunately this isn't aways true. Let me give you an example. After I put my treatment summery into into the LiveStrong Care Plan, I discovered that I had a risk of breast cancer as high as women who carry the BRCA gene. I spoke to my GP and asked for a referral to the team at the hospital that deals with BRCA women. She didn't think I should bother but I pushed and within a week I had an appointment and a breast MRI booked. I now have a breast surgeon looking after my high risk and am being screened yearly with the best equipment New Zealand has to offer. I know that if I do get breast cancer as a side effect of my treatment, we will catch it early and I will have the best possible chance of survival.
You have to understand, the medical system may not just give you what you need, but you are entitled to it and you should ask and expect that it be given. Sometimes you have to push a little which isn't easy, but know that you are worth it and you deserve the best chance at a full and happy life.
This video has been put together by The Institute of Medicine. The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of the US government to provide unbiased and authoritative advice to decision makers and the public.
Examples of late effects listed by the LiveStrong Foundation:
Examples of late effects from Chemotherapy:
- Difficulty with focused thinking (sometimes called chemo brain).
- Early menopause.
- Heart problems.
- Reduced lung capacity.
- Kidney and urinary problems.
- Nerve problems such as numbness and tingling.
- Bone and joint problems.
- Muscle weakness.
- Secondary cancers.
Examples of late effects from Radiation:
- Dry mouth.
- Permanent hair loss.
- Problems with thyroid or adrenal glands.
- Decreased range of motion in the treated area.
- Skin sensitivity to sun exposure.
- Problems with memory or ability to learn.
- Secondary cancers such as skin cancer.
Examples of late effects from Surgery:
- Scarring at the surgical site.
- Problems fighting infection.
- Lymphedema or swelling of arms or legs.
- Nutritional problems.
- Cognitive problems such as trouble focusing or memory loss.
- Changes in sexual function or fertility.
- Pain that may be chronic or long term.
- Difficulty with speech or swallowing.