Decisions, Decisions, Decisions

Post operation consultations

Today I had my post op meeting with my surgeon who is very happy with my progress. It is at this meeting that another name was given for the cancer which is Adenoid Cystic Carcinoma (ACC). He showed us a photo of the large 5cm tissue and septum area that he had removed in the second operation. This was much larger than I had envisioned. He mentions that the polyp removed in the first operation was a Stage 3 cancer which basically means it is an aggressive cancer (Stage 4 is the worst). The pathology of this second surgery (for removal of any remaining cancer) showed a stage 1 (low grade) cancer. The 2nd surgery included the removal of the posterior of my septum. Thankfully all this was done through my nostril and thus there is no disfigurement that can be seen. It did make it much more difficult for my surgeon to remove the septum & surrounding tissues however I am grateful that I 'look normal'. (I know vanity rears it's ugly head and it should be the least of my concerns at this stage.)

He also informs me that my severe headaches 2 weeks post op are an expected side effect of this operation, as well as the phlegm and blocked Eustachian tube. He assures me that all these symptoms will continue to improve. He is confident that he has gotten all of the cancer, however due to the nature of this rare cancer, being he thinks radiation therapy would be a wise option.

The surgeon and a multidisciplinary panel have met and consulted together about my case.

Oncology Team & Radiation

Rob & I then met with my oncology care team. We go over some of the medical stuff and what to expect. In a nutshell I have do not have to have radiation and chemotherapy is not mentioned. It is possible that they have got all the rest of the cancer in the second operation. However “the microscopic invasion of the cancer cells can be difficult for a surgeon to detect during surgery. Due to its microscopic size it may not even show up on MRI, CAT or PET scans. Even when achieving clean margins, it has been reported that this cancer has sometimes seemed to “skip” over areas and appear to have spread into a region close to the original tumor but not necessarily connected to it.”

The implementation of radiation therapy now is most likely to kill off any of these microscopic cancer if present. If we choose not to have the radiation and it does come back then it could be very difficult to locate & will quite possibly be in more inaccessible places that will be a lot more difficult to remove either surgically or with radiation, for example on the base of the brain.

Side Effects of Radiation

We discussed what the possible side effects could be from the wide spread radiation targeting my various sinuses. The majority of these are of a temporary nature, meaning discomfort and localized pain, fatigue & other such unpleasantness for a couple of months during and beyond the therapy itself.

However there are 2 possible side effects that are long term:

1. Possible Cataracts

I will be more susceptible to cataracts on my eyes. This is something that can easily be surgically removed and is quite a common procedure now.

2. Permanent Hearing Loss

The other thing that I am most concerned with is permanent hearing loss. The oncologist did not bring it up at all as a possible side effect. However with the advent of Google, we are able to look up a lot of researches and blogs etc ourselves and I found 2 people, both Americans I think, that have had the same rare cancer and been treated with radiation. One has lost so much of his hearing that he became bi-lateral cochlear recipient and the other just mentioned that she had permanently lost some hearing.

Real Life Cost

I do not want to risk losing the little hearing that I do have. I have been congenitally deaf all my life and I had a cochlear implant some 4 years ago which I feel has not helped a lot in my speech recognition. Sure a second cochlear would help me hear sounds but it doesn’t help me to recognize those sounds in a practical manner any more than the first one did! My initial thinking is that I would much rather take my chances and risk death down the track rather than go completely deaf as a result of radiation. I am sure many hearing people will not understand my reasoning. I am willing to explain or discuss this publicly if there is enough interest but this post today is NOT the time to explain my thoughts.

So that is where I am at today! I can take my time making my decision; ideally the Cancer Clinic would like to know in about a week’s time. Obviously my husband and family are impacted by whatever decision I take and I will be discussing all aspects and concerns they might have.

Most of the information about ACC I have sourced from Adenoid Cystic Carcinoma Organization International. Direct quotes have been done italics are from this very informative page.

(Edited sub note: Chemotherapy has shown to be relatively ineffective in the treatment of ACC)