My sister was diagnosed with carcinoid cancer just after Christmas. It was in her chest, which only happens about 25% of the time. 75% of the time, it's in the abdomen.
Her surgeon has been great. She actually spoke to my sister 5 out of 7 days plus they were emailing each other with information and questions for the month before the surgery. The dr was busy seeking information from other surgeons and oncologists since this is a rare form of cancer with which she had no prior experience.
The surgery has occurred and there aren't clean margins from the tumor. We were originally told that carcinoid is resistant to chemo and radiation, though I've seen online that there is success with radiation. This is my sister's next step.
They also found out on the day of the surgery that she also has cancer on her pancreas. They are assuming this will turn out to be carcinoid, too, but they will not be certain until she recovers more from the original surgery so she can have this biopsied.
She is in very good spirits and she doesn't have to always have her coughing pillow in her arms anymore. She is 3 weeks post op today.
So, even though this is a rare cancer, do you know of anyone who has experienced it and what their recovery plan included?
Luckily, her heart has not been affected by the carcinoid, since this is a side affect of this cancer, too.
If you've read this far and don't have any knowledge of this cancer, please pray for my sister's recovery. She's 34 yo and she has a 3 and a 5 yo. We are convinced that she found the tumor for a reason since her only symptom was a cough and that through prayer, she will recover fully.
On another note, her tumor was wrapped around one of the nerves that is next to her vocal chords. She can only speak in a whisper now and an ENT surgeon will be putting a stabilizer in her neck later to see if they can bring her voice back. She said her 3yo DS whispers to her now and then he says, "Mommy, I forget. Why are we whispering?" She thinks that is just the cutest thing.
Her surgeon has been great. She actually spoke to my sister 5 out of 7 days plus they were emailing each other with information and questions for the month before the surgery. The dr was busy seeking information from other surgeons and oncologists since this is a rare form of cancer with which she had no prior experience.
The surgery has occurred and there aren't clean margins from the tumor. We were originally told that carcinoid is resistant to chemo and radiation, though I've seen online that there is success with radiation. This is my sister's next step.
They also found out on the day of the surgery that she also has cancer on her pancreas. They are assuming this will turn out to be carcinoid, too, but they will not be certain until she recovers more from the original surgery so she can have this biopsied.
She is in very good spirits and she doesn't have to always have her coughing pillow in her arms anymore. She is 3 weeks post op today.
So, even though this is a rare cancer, do you know of anyone who has experienced it and what their recovery plan included?
Luckily, her heart has not been affected by the carcinoid, since this is a side affect of this cancer, too.
If you've read this far and don't have any knowledge of this cancer, please pray for my sister's recovery. She's 34 yo and she has a 3 and a 5 yo. We are convinced that she found the tumor for a reason since her only symptom was a cough and that through prayer, she will recover fully.
On another note, her tumor was wrapped around one of the nerves that is next to her vocal chords. She can only speak in a whisper now and an ENT surgeon will be putting a stabilizer in her neck later to see if they can bring her voice back. She said her 3yo DS whispers to her now and then he says, "Mommy, I forget. Why are we whispering?" She thinks that is just the cutest thing.
. Wishing her all the best. I just have some of the voice experience. My tumor was crushing my trachea and my one vocal chord was bruised after the surgery so I was basically whispering alot too. One of the options was to do the stabilizing thing too. Is that where they will use the foam to push the vocal chords closer to each other? (I didnt have that surgery though) Its been a year and my voice is better but not great at times, usually after 8 pm its hoarse and whisper low sometimes. Hoping your sister will get the best treatment possible as she fights this battle. I am sure you will be a great source of comfort and encouragement for her too.
