Follow-up at BC Cancer Agency

My mom, dad, and I headed into Victoria today because I had my follow-up appointment at BC Cancer Agency with my surgeon, and also had an appointment with the radiation oncologist to discuss potential radiation treatment. I still can't drive, so I have to rely on everyone else to chauffeur me around. :)

Before my appointments, we headed to a family friend's place in Sydney and had a nice, healthy lunch and visited for a while. Then we headed to BCCA. I have to say that the building is gorgeous and I'm always treated so well when I go there. There is always some complimentary tea for the patients and families.

I answered a questionnaire on an iPad before my appointment. Most of the questions were related to pain, bowel movements, and bladder/urination issues. There was a little bit about emotional states, like depression or sadness. Fortunately, I don't feel depressed, only frustrated that I'm still in pain and taking heavy medication everyday.

Once my mom and I got in to see the radiation oncologist, I felt pretty good. She was very impressive. She really knew her stuff, and I liked her approach. She explained that there are 3 criteria for recommending radiation treatment... if you meet 2 of the 3, then they suggest radiation as a secondary treatment to the surgery.

1. Tumour size - anything over 4 cm is a risk for recurrence. My tumour was exactly at 4cm, so I didn't quite meet this criteria.
2. Depth of invasion of the tumour. Mine was at 8mm, which is considered high risk.
3. Lymphatic vascular space invasion (LVSI). This is the lymph within the cervix, and I had some vascular invasion. (I know ... it sounds like a video game)

So unfortunately, I met 2 of the 3 criteria. Therefore, the standard treatment protocol is radiation. However, when I discussed this with the oncologist, she explained that there is a 20% chance of recurrence based on my status. With radiation, risk of recurrence is reduced to 10%. So with all the potential side effects from the radiation to only have a 10% improvement in outcomes didn't seem like enough to move forward with radiation. 

When I said this to the oncologist, she was amazingly receptive to that decision. She said she would be willing to break protocol and monitor me for the next 5 years. She said that because I had 14 lymph nodes removed, that improved my chances. She admitted that the treatment protocol that is used today is based on a study from back in the 1990s and it didn't include the removal of the sentinel lymph nodes, so there is not enough information related to my particular situation. So I will be having regular MRI scans and seeing her every 6-8 months for a few years, then the MRIs and visits will be once per year for 5 years ... and potentially up to 10 years. 

Hopefully I've made the right decision regarding the radiation treatment. Worst case scenario is the cancer returns to a lymph node (which is where recurrence would appear), and they have to do surgery to remove it and then I'd have to have radiation treatment. If I have radiation now, I would not have that as an option in the future.

Here is a research study on LVSI for stage 1B1 cervical cancer:

https://www.ncbi.nlm.nih.gov/pubmed/17722314

After that I met with the surgeon and he did a thorough exam. He couldn't understand why I was having the intense pain in my groin area. He explained that they didn't do any surgery around that area, so it shouldn't be in pain. He felt it might be a hernia, but couldn't commit to that either because I was having the pain right from day 1 after the surgery, and I feel the pain even when I'm not moving (if I'm not on medication). Anyway, eventually he thought that it might be related to the bladder repair so he's going to reach out to the urology department to see if they might have encountered this type of issue before. I have another appointment with him in Victoria in a month. I'm hoping this pain will be healing by then.

Other than that, I am healing well and he was impressed with my energy level. As soon as this groin pain is gone, I will be able to drive again and will have some freedom. It can't be too soon for me!