This is a big one.
Results from my surgeon about my last surgery (Dec15th)
Doc "We removed 6 lymph nodes, and they all tested negative for cancer"
YESSSSS! YAHOO!! WHOO WEEE! And not just because they were clear but because he took way more than he was originally going to which covers the other "surprise lump" and my arm doesn't even hurt anymore. That's awesome and I am GRATEFUL!
Doc "The bad news is, we removed 6cm of tissue and your margins are still negative"
BUMMER. There is probably still cancer in my breast, hence more surgery.
Doc "And the weird thing is, your cancer is very unusual...it is in multiple small nests deposited all throughout the tissue and there are more than one type of cancer."
Doc "Your cancer doesn't really have any of the typical characteristics of breast cancer, but I assure you it is still considered breast cancer."
HMMPH. What the hell does that mean? I didn't have a chance to get into details about it with him, because there were many more important priorities to address with him still. That's the thing, For me, with my surgeon, I feel like I always have questions unanswered because I feel like his priority is to only discuss getting the cancer out, which isn't a bad thing, but it keep me hunting for answers...I am sure the day I meet the oncologist that will all change.
My doc discussed with me that I will have to get genetic testing and an MRI (to look for cancer still in my breast and other breast too to be safe) both of these things need to be done ASAP and if I have the gene, the boobs gotta go. You see there is a reoccurance of 50-85% with a 3% increas in that risk each year you are alive...which for me is almost a guarantee...so bye bye boobies...
If the MRI shows more cancer in my infected breast, I need it removed...
AND, if the MRI shows nothing, doc would go back in and make a bigger margin again (and hope there would be one this time)
Basically we are both feeling that there is a good chance I still have cancer in my infected breast.
So I left the doc's with major mixed feelings. Mostly I was scared of my "weird" cancer...WTF did that mean and should I be scared? He said it was "concerning" to him, so that sucks...but I was sooooo happy my nodes were clear. I was starting to think more and more that a mastectomy would be a good idea, because even if there wasn't anymore detectable cancer in my tissue, I would live afraid that one of the little nests had "crossed the border" so to speak and was starting a new colony somewhere in my breast OR body....kind of like cutting off the moldy cheese on a block of cheddar...you have to take enough to make sure there isn't invisible bacteria somewhere just waiting to grow, OR you could not risk it and just toss the cheese out. I am thinking I want to toss the cheese and get a new block of cheese. :)
I drove home with my husband, the mood was grim, I was beat, I went to bed.
I woke up at 3am with cancer-mares....barely slept until 6am then I crashed and woke up all groggy at 10am. I was to go to a dentist appointment (this was yesterday). I was in a bad place from the time I opened my eyes...thoughts of dying had never been more vivid and every 20 seconds I was shot with fear through my body and felt like I was going to puke...I was DEPRESSED!!! Officially.
I tried to have a tea and take in some useless Facebook time to cheer me up but then the phone rang.
Doc"So, I found out that even with a rush order, the soonest you would be getting your genetic results back would be in 3-6 months, therefore we can't wait on the results for you to make a decision on what you want to do."
My stomach sank
Doc"You have to make a decision here Megan and here are your choices..."
There will be an MRI later January....
Senario 1. The MRI shows there is still cancer on my breast...Mastectomy...live with one boob until my genetic tests are in and my chemo is over and I am healthy again....
Senario 2. The MRI shows nothing....I either have a mastectomy (again on the one breast) and live with one boob until my tests are in and chemo is done and I am healthy again. OR have another surgery where doc makes a bigger margin, hoping to god he gets it all, and there isn't some cancer cell that has hidden itself somewhere for a rainy day. Then wait for genetic tests, if I am positive then after the chemo I get both boobs off, and reconstructed at the same time.
Originally I wanted both boobs gone, right away and reconstructed right away to minimize my risk and minimize the number of surgeries in my future, basically "GET IT OVER WITH" so I can move on to chemo and the rest of the fun....but Doc says it's "unethical" for him to remove a breast without knowing if it is neccesary, and we can't wait for the results so it would be one boob at a time. So I tell him I don't think I could live without one breast for even a day!! the thought of seeing even my lumpectomy scar freaks me out and makes me sick.
He tells me I can't reconstruct it until I have the genetic results back because, the flap reconstruction can only be done once, so my one boob would just have to wait for the other...
It was starting to look like I didn't have much choice after all.
Doc said to think about it for a week. I hung up the phone and went ballistic.
This was officially the worst day of my life. ever. I wanted to get hit by a truck. I have never felt such helpless fear and anguish in my life. the rest of the day I had to get a haircut, chest Xray and blood tests and I basically walked around town perma-bawling and feeling like I was going to puke and any moment...
My husband took the afternoon off of work, canceled my dentist appointment, and called his folks to invite ourselves over for dinner to talk about it. Once there my day continued, sick, sad, scared, SO SCARED, like I was actually convinced I was going to die. Depressed, sick, angry, tired Help Me!!!!!
Until about 7:30pm.
I read a blog on a woman who got breast cancer when she was pregnant and had to have a mastectomy when she was pregnant and she didn't even really complain.
"It's a small price to pay to live" she said. Well. Ain't that the truth. I mean, this woman has a way worse situation than I and she is calm and centered. Nice. My clouds started parting...
Then an email from an old friend. She had a messy mammogram come back and was scared and needed my help and info to calm her down....while I don't believe in sugar coating cancer (because I still am pissed at everyone who told me I didn't have cancer and then I did and was un prepared!!) I had a moment of clarity. I could help someone. I had a purpose and it wasn't only selfish. I had to be strong so I could hold others up!! My clouds dissappeared. Just like that.
I went from wanting to die, to awakened in less than an hour!!
This felt much better. I was going to go to bed and feel better tomorrow.
What a day.
Results from my surgeon about my last surgery (Dec15th)
Doc "We removed 6 lymph nodes, and they all tested negative for cancer"
YESSSSS! YAHOO!! WHOO WEEE! And not just because they were clear but because he took way more than he was originally going to which covers the other "surprise lump" and my arm doesn't even hurt anymore. That's awesome and I am GRATEFUL!
Doc "The bad news is, we removed 6cm of tissue and your margins are still negative"
BUMMER. There is probably still cancer in my breast, hence more surgery.
Doc "And the weird thing is, your cancer is very unusual...it is in multiple small nests deposited all throughout the tissue and there are more than one type of cancer."
Doc "Your cancer doesn't really have any of the typical characteristics of breast cancer, but I assure you it is still considered breast cancer."
HMMPH. What the hell does that mean? I didn't have a chance to get into details about it with him, because there were many more important priorities to address with him still. That's the thing, For me, with my surgeon, I feel like I always have questions unanswered because I feel like his priority is to only discuss getting the cancer out, which isn't a bad thing, but it keep me hunting for answers...I am sure the day I meet the oncologist that will all change.
My doc discussed with me that I will have to get genetic testing and an MRI (to look for cancer still in my breast and other breast too to be safe) both of these things need to be done ASAP and if I have the gene, the boobs gotta go. You see there is a reoccurance of 50-85% with a 3% increas in that risk each year you are alive...which for me is almost a guarantee...so bye bye boobies...
If the MRI shows more cancer in my infected breast, I need it removed...
AND, if the MRI shows nothing, doc would go back in and make a bigger margin again (and hope there would be one this time)
Basically we are both feeling that there is a good chance I still have cancer in my infected breast.
So I left the doc's with major mixed feelings. Mostly I was scared of my "weird" cancer...WTF did that mean and should I be scared? He said it was "concerning" to him, so that sucks...but I was sooooo happy my nodes were clear. I was starting to think more and more that a mastectomy would be a good idea, because even if there wasn't anymore detectable cancer in my tissue, I would live afraid that one of the little nests had "crossed the border" so to speak and was starting a new colony somewhere in my breast OR body....kind of like cutting off the moldy cheese on a block of cheddar...you have to take enough to make sure there isn't invisible bacteria somewhere just waiting to grow, OR you could not risk it and just toss the cheese out. I am thinking I want to toss the cheese and get a new block of cheese. :)
I drove home with my husband, the mood was grim, I was beat, I went to bed.
I woke up at 3am with cancer-mares....barely slept until 6am then I crashed and woke up all groggy at 10am. I was to go to a dentist appointment (this was yesterday). I was in a bad place from the time I opened my eyes...thoughts of dying had never been more vivid and every 20 seconds I was shot with fear through my body and felt like I was going to puke...I was DEPRESSED!!! Officially.
I tried to have a tea and take in some useless Facebook time to cheer me up but then the phone rang.
Doc"So, I found out that even with a rush order, the soonest you would be getting your genetic results back would be in 3-6 months, therefore we can't wait on the results for you to make a decision on what you want to do."
My stomach sank
Doc"You have to make a decision here Megan and here are your choices..."
There will be an MRI later January....
Senario 1. The MRI shows there is still cancer on my breast...Mastectomy...live with one boob until my genetic tests are in and my chemo is over and I am healthy again....
Senario 2. The MRI shows nothing....I either have a mastectomy (again on the one breast) and live with one boob until my tests are in and chemo is done and I am healthy again. OR have another surgery where doc makes a bigger margin, hoping to god he gets it all, and there isn't some cancer cell that has hidden itself somewhere for a rainy day. Then wait for genetic tests, if I am positive then after the chemo I get both boobs off, and reconstructed at the same time.
Originally I wanted both boobs gone, right away and reconstructed right away to minimize my risk and minimize the number of surgeries in my future, basically "GET IT OVER WITH" so I can move on to chemo and the rest of the fun....but Doc says it's "unethical" for him to remove a breast without knowing if it is neccesary, and we can't wait for the results so it would be one boob at a time. So I tell him I don't think I could live without one breast for even a day!! the thought of seeing even my lumpectomy scar freaks me out and makes me sick.
He tells me I can't reconstruct it until I have the genetic results back because, the flap reconstruction can only be done once, so my one boob would just have to wait for the other...
It was starting to look like I didn't have much choice after all.
Doc said to think about it for a week. I hung up the phone and went ballistic.
This was officially the worst day of my life. ever. I wanted to get hit by a truck. I have never felt such helpless fear and anguish in my life. the rest of the day I had to get a haircut, chest Xray and blood tests and I basically walked around town perma-bawling and feeling like I was going to puke and any moment...
My husband took the afternoon off of work, canceled my dentist appointment, and called his folks to invite ourselves over for dinner to talk about it. Once there my day continued, sick, sad, scared, SO SCARED, like I was actually convinced I was going to die. Depressed, sick, angry, tired Help Me!!!!!
Until about 7:30pm.
I read a blog on a woman who got breast cancer when she was pregnant and had to have a mastectomy when she was pregnant and she didn't even really complain.
"It's a small price to pay to live" she said. Well. Ain't that the truth. I mean, this woman has a way worse situation than I and she is calm and centered. Nice. My clouds started parting...
Then an email from an old friend. She had a messy mammogram come back and was scared and needed my help and info to calm her down....while I don't believe in sugar coating cancer (because I still am pissed at everyone who told me I didn't have cancer and then I did and was un prepared!!) I had a moment of clarity. I could help someone. I had a purpose and it wasn't only selfish. I had to be strong so I could hold others up!! My clouds dissappeared. Just like that.
I went from wanting to die, to awakened in less than an hour!!
This felt much better. I was going to go to bed and feel better tomorrow.
What a day.
1 comment:
I am so sorry to hear what you are going through. I am a Supervisor of a large mammogram department and we hear the same story all too often. There ofter tends to be so many tests until you finally find out what is actually going on. Just stay positive andkeep asking questions. The better informed you are the better. Best of luck and my thought are with you.
Post a Comment