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)


  1. What a huge time you are going through. I just found your blog as I was searching for Explosion Cards. Then saw you were an Aussie so thought I would have more of a look at what you create. Before I go I just have to wish you every success with your choices. Lovely cards by the way.

    1. Thank you Merry. Yes, it is a rotten position to be in at the moment. Did you find your explosion cards? Were you after instructions or samples? I might have some in computer storage somewhere. I only have the boxes on this site at this stage.

  2. Sending you every good wish I can during your decision time. I was diagnosed with ACC in 2006, and went through surgery and radiation. They still watch me for cataracts - none yet. The extra fluid on my ear due to the radiation eased off without causing permanent damage to my hearing. I have written about my personal treatment stories, and linked to more information about ACC on my blog: . Please let me know if I can get you in contact with a medical librarian to help you search further in the biomedical information than Google.

    1. Thank you for your encouragement. I started to go back to the beginning of your blog to read of your ACC journey, but didn't get far. (too tired) but I have bookmarked it for future reading. I have just found a Australian Support group and joined them. It is nice to know I have others I can rely on. (PS I used to be a Library Technician way back yonder!)

  3. I just came across your blog and wanted to wish you the best of luck in your decision. I have end-stage cancer myself (breast that has spread to the liver) and the decisions we have to make are often very difficult. The only radiation I had was Gamma Knife radiation to try to stop some liver tumors, which is highly targeted and not what you will be facing, I don't think, but it went well. We still don't know and with breast cancer, it won't be permanent, but it could give me more time.

    My only advice is that you do as much research as you can, talk to everybody you can and make your decision based on everything you come up with so that whatever happens - whether you have the rads and lose your hearing, or don't and end up with spread - you know you did the best you could. Do NOT let anybody rush you into it because of something like schedules or a cancer center's convenience or something like that. You deserve and have the right to make a good decision or yourself.

    Best to you.

    1. Thank you for your support Ann. As I just mentioned to Teresa, I have just found a ACC Support Group. I had breast cancer just over 2 years ago but the 2 are totally not related. I was just unlucky enough to be hit twice! I have made a decision to go ahead with the radiation and now that I decision has been made I am at peace once again. Making the decision was the hardest part! What my hubby suggested was to postpone the radiation for 4 weeks to allow my body (head) to recover from the 2 recent surgeries as they have really knocked me around. We are going to use the time to travel in our caravan trailer as soon as possible.

  4. Just thought I would add yet another postscript: I did NOT go ahead with the radiation after all. The side effects esp the possibility of losing my hearing freaked me out too much. I decided to take my chances however I made a promise that I would really consider the possibility of radiation if it comes back which apparently is highly likely with this type of cancer. One never goes "into remission" with ACC. It is now 2 years since I was first diagnosed and 8 operations later, (including 4 for unrelated kidney stones). I am expected to have regular 3 monthly checkups with my specialist and yearly MRI's which has been impossible until just recently when I finally had my cochlear replaced with a MedEl brand of cochlear which is 'MRI friendly'. I have learnt to live with the uncertainty. I have a few things I have to deal with since then: Fatigue not every day but certainly several times a week. I suffer more frequent headaches. Also I can not sleep flat usually requiring 3 pillows with the odd nights when I can't breathe laying down at all so I sleep in my recliner chair. I also have occasional nights of insomnia. I rarely can smell and that obviously affects my sense of taste. Still I have a life that I mostly enjoy. I have new friends and my husband and adult children are very supportive. I have much to be thankful for.


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