Adenocarcinoma

Hello All,
I hope everyone is doing well. I am aware that FA camp in the states starts this Friday. I am disappointed that we were not able to make it again this year. However, our turn will come again.
My mum came home from Africa on Friday. It is really nice to have her home. On Sunday, after church, we had a family lunch at my sister's house. I am really amused by Tim, Liesl's husband....hehe. He seems to constantly have energy and endurance with the kids. Eliana is his daughter and you can see her in the photo. The other child is mine....Isaac. Uncle Tim is good at roughing Isaac up and in this photo he had been roughing Isaac up a while and Eliana also wanted to join in. It was really funny and noisy and crazy. I am amused. Moving right along.
My dad is still in Tanzania. Please pray for him. He has been really unwell and they think he has Malaria. He will be home this Friday. Below is a picture of the wound on my hand where another lesion was taken. I am showing the photo just out of interest....hehe. Doesn't it look interesting. Alan reckons it looks like a spider. In real life, it does! It is healing well and looks a bit better than this now. It has dissolvable stitches in it. It has been really sensitive. I was concerned it was not ready to have the stitches out yet and then the surgeon told me they were dissolvable so that is a relief.

So I had my follow up with my surgeon today. He tugged and pulled at the wound on my head which he told me is healing well. It hurt while he was tugging. Even though it is healing well, he was not ready to take out the stitches today. It has almost been 2 weeks and for a person who doesn't have any health issues, he would have taken the stitches out but he is being extra careful with me. He knows FA can cause delayed healing and because of the pressure on the skin with the scalp, he doesn't want it to pop open just by chance. He doesn't think it would because it looks good but he wanted to leave the stitches in for one more week to give it time to heal real well. Also, I would probably bleed easily if it popped open so it is better to not risk it.

I now have the pathology report in my hot little hands in regards to the type of cancer. On the phone the surgeon had told me that this tumor is unlikely to spread and is not a sebaceous gland carcinoma. I am still a little unsure about the details of this cancer. Today he confirmed it is not sebaceous gland carcinoma but an adenocarcinoma which is consistent wit a primary eccrine carcinoma. Let me explain. An adenocarcinoma refers to cancers within tissue that is glandular like the epidermis (skin). Adenocarcinomas can be in different places like the breast, armpits and other places. Mine is a sweat gland tumor......which is what an eccrine carcinoma means. Now I got the basic explanation from the surgeon. However, from researching it myself, I have also become to understand a bit. Sweat glands are obviously all over the body. Mine was in the scalp. It was completely excised with clear margins.

However, I am confused and a little alarmed. I mentioned that they told me this type of tumor usually remains localised and most unlikely won't spread. Then today he said this again but he said it CAN spread but is unlikely. So, he thinks I should still have my lymph nodes checked regularly. I looked it up and it mentioned that this type of cancer has a high potential of spreading......this is where I became alarmed and unsure of what I have been told. I was worried I was told the wrong information. I know that sometimes when we look things up without being a doctor, we can get it wrong........but I don't want to take my chances and now that I have looked things up I have HEAPS of questions. However, I really think the surgeon does not know much at all. He just cuts things out. I am interested to know why this tumor is much different to a sebaceous gland carcinoma. Less aggressive I have been told.......which is good......I am not sure if the location of the tumor in my scalp has anything to do with spreading being less....and they excised it all with clear margins....this could be so. So why does the info I have tell me that it has a high potential of spreading?

I also found out that this sweat gland tumor is also very rare. Not many cases recorded at all.....apparently.

SO, I do know that it is a better outcome than sebaceous gland.....but I am determined to understand all this different information I have on whether it can spread or not. Looks like I will need follow up.

I am talking to my head and neck oncologist about it more too. He will be able to tell me more than a surgeon about the type of cancer and about it more.

We are also getting in touch with Blanche Alter about it all. She has been guiding us through stuff since we found out about the tumor. I have written to her and copied her in on my pathology. We are trying to get some more info about the tumor and about any follow up that might be needed for an FA patient with this type of cancer. We hope to talk to her on the phone as well. She already has been very helpful when we thought it was a sebaceous gland carcinmona.

So, once I know more again I will let you all know. I know one thing......this tumor is BETTER than the sebaceous gland. The statistics of reoccurance with sebaceous gland were horrible. The surgeon seems really relieved it was not sebaceous gland. He said, "you certainly gave everyone a scare. A sebaceous gland carcinoma is something very different". So obviously a sebaceous gland carcinoma is not good. Praise the Lord it is not that. However, I still feel a bit alarmed. He also said he was SO relieved that the whole cancer was excised and that he was nervous it would come back with no clear margins. He didn't want to see me needing any harmful treatment.

Now, also another thing. I have something in the gynae area which I have been treating the last month. I am concerned about it. I am probably paranoid by the cancer scare i have just had. This spot didn't just "turn up" but has been caused by something but doesn't seem to be healing well even after a month of steriod therapy....so I am thinking I will have it biopsied. All I can think about is that this cancer in my head was left there for 6 to 12 months wrongly diagnosed and I don't want that to happen again in another part of my body. I mean, it may not be anything at all. However, I am scared not to biopsy it after what has happened with my head.

Well, sorry for writing so much. Please keep me in prayer and thanks for all your support.

I better start to settle. I am working tomorrow.

Love Charisse