I did get the biopsy done last Friday, and had high hopes that I would hear the results on Monday. Well, Monday came and went without any news. And it was 5:30 today before I finally got the call I was waiting for from the surgeon with the biopsy news. And the news was not what I was hoping for, but what I was kind of expecting given that I didn't hear until so late. The biopsy showed more cancer in the new spot and so now mastectomy is pretty much the only option. There's more to this story, and maybe I'll update this post later, but for now I'll just stick with the basic news. Surgery will no be an April 13 and I will meet with the plastic surgeon asap to discuss reconstruction. If there is a bright spot here, it is that I really liked the plastic surgeon so I won't mind having to see more of her.
The good news, that I don't think I posted yet, is that the PET scan looked very good. All the lymph nodes except for one looked normal, and the one that didn't look right is under my collarbone so it doesn't require me to make any agonizing decisions about whether to cut it out or not, since it isn't one that they can cut out. So the chemo did a really good job on the cancer and I will not be having any lymph nodes removed. I will have radiation on them after surgery and that should be able to knock any remaining cancer cells out. I have been much more worried about losing the lymph nodes than losing a breast, so I'm trying to put all of the news of the last week into perspective and get ready to move forward. Just as soon as I get some sleep...
Tuesday, March 29, 2011
Wednesday, March 23, 2011
The next curve in the road
I thought I would post an update so you aren't all left hanging after my stories from earlier today.
I just got off the phone with the surgeon, and here are the possibilities regarding the calcifications: 1) totally benign and just happened to change during chemo 2) cancer - if it is cancer it was probably there all along and just got missed due to the dense tissue. Which sounds much better than having some kind of super-cancer that feeds on chemotherapy. He noted that there were those other spots on the MRI that looked suspicious even though we weren't able to find anything with the ultrasound. My choices now are: 1) have a mastectomy and be done with it, 2)have these spots biopsied to see what is going on before deciding. If they are benign I could still have the lumpectomy, if not or they are still looking suspicious then we can still do the mastectomy. If they can get the biopsy scheduled this week I could still stick to the original surgery date of March 30.
I decided that I really want to know more before making this call. Mastectomy and reconstruction means two real surgeries, and lumpectomy would be much easier. Plus I can't stop thinking that I would have regrets about lopping off body parts if I found out these areas were benign after it is too late. So, I asked for the biopsy and now am waiting for the call to see if they can fit me in this week. With my luck I'll have to go buy another sports bra for a biopsy tomorrow (since the other ones are at home) and then have to have a mastectomy and never need it again - ha! Note to readers: I have always found that things you predict out loud don't come true - that's why I wrote that.
I just got off the phone with the surgeon, and here are the possibilities regarding the calcifications: 1) totally benign and just happened to change during chemo 2) cancer - if it is cancer it was probably there all along and just got missed due to the dense tissue. Which sounds much better than having some kind of super-cancer that feeds on chemotherapy. He noted that there were those other spots on the MRI that looked suspicious even though we weren't able to find anything with the ultrasound. My choices now are: 1) have a mastectomy and be done with it, 2)have these spots biopsied to see what is going on before deciding. If they are benign I could still have the lumpectomy, if not or they are still looking suspicious then we can still do the mastectomy. If they can get the biopsy scheduled this week I could still stick to the original surgery date of March 30.
I decided that I really want to know more before making this call. Mastectomy and reconstruction means two real surgeries, and lumpectomy would be much easier. Plus I can't stop thinking that I would have regrets about lopping off body parts if I found out these areas were benign after it is too late. So, I asked for the biopsy and now am waiting for the call to see if they can fit me in this week. With my luck I'll have to go buy another sports bra for a biopsy tomorrow (since the other ones are at home) and then have to have a mastectomy and never need it again - ha! Note to readers: I have always found that things you predict out loud don't come true - that's why I wrote that.
The roller coaster ride continues
I bet you all thought that things were on a predictable, even course now, didn't you? Well, so did I - wrong again!
I showed up Monday morning for the mammogram and ultrasound, secure in the knowledge that a tumor that can no longer be felt must have responded well to chemo and so I had little to worry about. The good news is that I was right about that part - the original tumor is barely visible anymore. They can still see the edges of it, so the measurement doesn't seem to have changed much, but it is all hollowed out and kind of sucked in, indicating that most of it has disappeared. So that's the good news.
They also found several calcifications on the mammogram that were either not there in November, or were barely visible, and now they are brighter and bigger. One of these areas is in a cluster, which is evidently more likely when there is cancer. The radiologist (who was the one that I like, so that was good) said that she thought it looked very suspicious and her first reaction was that the breast needs to go. Later she kind of backpedaled on that and said that the surgeon and I would need to talk about it - I'm guessing it's not her place to make that call. She did say that if I was not already a cancer patient, this was an area that they would biopsy for sure. As I read all about calcifications online Monday afternoon, it looks to me like this is just the kind of situation that had me skipping mammograms in the first place. Eighty percent of the biopsy's that they do on these end up being benign. On the other hand, if they really have changed this much in 4 months maybe that is a more ominous sign. I'm still wondering if perhaps something else was different this time - I forgot to ask whether the calcifications in the area of the tumor look brighter now too. The radiologist commented several times that this is extremely rare, and if it is a new cancer that started growing during chemo, it also isn't good. So, welcome to roller coaster ride that is my life, is your seat belt securely fastened?
As I tried to process this news, which isn't really solid news, just new doubts and speculations, I watched the weather forecast develop into a winter storm warning for Tuesday and Wednesday, with a foot of snow predicted. My PET scan was scheduled for Wednesday morning, and I did not want to miss or delay it, so I called the clinic to see how often they close up due to bad weather. Almost never, was the answer, they hadn't closed so far this winter despite some major storms.
So, secure in the knowledge that my appointment would go on if I could get there, I headed to Fargo last night so I could be here this morning for the test. The Weather Channel was even here. If you want to experience surreal, try walking back to your hotel with lightning flashing and thunder rumbling, getting pounded by wind driven sleet pellets, past The Weather Channel guys who are huddled in their van next to a little blue tarp-tent over their camera on the sidewalk. What a glamorous job they have - kind of like a fisheries biologist!
This morning it looked like 8-10 inches of new snow had fallen overnight and several of the major highways were closed. I was sure I had made the right call coming early. Then the cell phone rang. It was the PET department. It seems that the radioactive sugar that they inject for the test is made in Grand Forks, and since the roads were closed they could not get it to Fargo in time for my test. I asked if later today would be a possibility, but she didn't think so because the solution has such a short shelf life they would have to start over and make a new batch. My options for rescheduling were Monday or early tomorrow morning. I picked tomorrow, wanting to get some of this uncertainty cleared up. I would really like to have more than a day to mentally prepare for whatever surgery I will end up having. Although, the PET scan will have limited value for that, since PET scans are not very good at detecting early breast cancers, however it will show if there is anything still going on in my lymph nodes. Since I have to check in at 6:30 am, I decided to just stay here in Fargo for another day and get some work done, rather than spend today driving back home, walking the dogs, and being distracted all day.
So that's where things stand right now. I haven't talked to the surgeon yet, so I don't know what his advice will be regarding a biopsy or perhaps to go straight to mastectomy. It's kind of funny because initially I was all ready to prepare mentally for mastectomy, but over time the doctors kept insisting that lumpectomy was going to be possible and eventually I completely bought into that. To switch gears back to losing my breast now, less than a week before it would happen is not easy. Another lesson in the benefits of living in the moment and not jumping too far ahead of yourself I guess, but that doesn't make it any easier to adjust to right now. And on top of that the question still remains very much open as to whether this is what will happen. How will I feel if I get a mastectomy and then find out that these calcifications were benign? Do I really want to have another biopsy before having surgery? Is this just a preview of what I am if for with future cancer screening? I'll bet it is. Not to mention the more ominous questions, like: Is this a second cancer that was there all along but got missed at first? And, what would it mean if a new cancer has started growing during some of the nastiest chemotherapy out there.
Well, I hope this post doesn't bring you all down, but why should I have all the fun alone, right? And, as I keep reminding myself, I really don't know anything yet, so I'm back to practicing patience with not knowing what tomorrow will bring. Hopefully it brings some radioactive sugar to Fargo by 6:30 am.
I showed up Monday morning for the mammogram and ultrasound, secure in the knowledge that a tumor that can no longer be felt must have responded well to chemo and so I had little to worry about. The good news is that I was right about that part - the original tumor is barely visible anymore. They can still see the edges of it, so the measurement doesn't seem to have changed much, but it is all hollowed out and kind of sucked in, indicating that most of it has disappeared. So that's the good news.
They also found several calcifications on the mammogram that were either not there in November, or were barely visible, and now they are brighter and bigger. One of these areas is in a cluster, which is evidently more likely when there is cancer. The radiologist (who was the one that I like, so that was good) said that she thought it looked very suspicious and her first reaction was that the breast needs to go. Later she kind of backpedaled on that and said that the surgeon and I would need to talk about it - I'm guessing it's not her place to make that call. She did say that if I was not already a cancer patient, this was an area that they would biopsy for sure. As I read all about calcifications online Monday afternoon, it looks to me like this is just the kind of situation that had me skipping mammograms in the first place. Eighty percent of the biopsy's that they do on these end up being benign. On the other hand, if they really have changed this much in 4 months maybe that is a more ominous sign. I'm still wondering if perhaps something else was different this time - I forgot to ask whether the calcifications in the area of the tumor look brighter now too. The radiologist commented several times that this is extremely rare, and if it is a new cancer that started growing during chemo, it also isn't good. So, welcome to roller coaster ride that is my life, is your seat belt securely fastened?
As I tried to process this news, which isn't really solid news, just new doubts and speculations, I watched the weather forecast develop into a winter storm warning for Tuesday and Wednesday, with a foot of snow predicted. My PET scan was scheduled for Wednesday morning, and I did not want to miss or delay it, so I called the clinic to see how often they close up due to bad weather. Almost never, was the answer, they hadn't closed so far this winter despite some major storms.
So, secure in the knowledge that my appointment would go on if I could get there, I headed to Fargo last night so I could be here this morning for the test. The Weather Channel was even here. If you want to experience surreal, try walking back to your hotel with lightning flashing and thunder rumbling, getting pounded by wind driven sleet pellets, past The Weather Channel guys who are huddled in their van next to a little blue tarp-tent over their camera on the sidewalk. What a glamorous job they have - kind of like a fisheries biologist!
This morning it looked like 8-10 inches of new snow had fallen overnight and several of the major highways were closed. I was sure I had made the right call coming early. Then the cell phone rang. It was the PET department. It seems that the radioactive sugar that they inject for the test is made in Grand Forks, and since the roads were closed they could not get it to Fargo in time for my test. I asked if later today would be a possibility, but she didn't think so because the solution has such a short shelf life they would have to start over and make a new batch. My options for rescheduling were Monday or early tomorrow morning. I picked tomorrow, wanting to get some of this uncertainty cleared up. I would really like to have more than a day to mentally prepare for whatever surgery I will end up having. Although, the PET scan will have limited value for that, since PET scans are not very good at detecting early breast cancers, however it will show if there is anything still going on in my lymph nodes. Since I have to check in at 6:30 am, I decided to just stay here in Fargo for another day and get some work done, rather than spend today driving back home, walking the dogs, and being distracted all day.
So that's where things stand right now. I haven't talked to the surgeon yet, so I don't know what his advice will be regarding a biopsy or perhaps to go straight to mastectomy. It's kind of funny because initially I was all ready to prepare mentally for mastectomy, but over time the doctors kept insisting that lumpectomy was going to be possible and eventually I completely bought into that. To switch gears back to losing my breast now, less than a week before it would happen is not easy. Another lesson in the benefits of living in the moment and not jumping too far ahead of yourself I guess, but that doesn't make it any easier to adjust to right now. And on top of that the question still remains very much open as to whether this is what will happen. How will I feel if I get a mastectomy and then find out that these calcifications were benign? Do I really want to have another biopsy before having surgery? Is this just a preview of what I am if for with future cancer screening? I'll bet it is. Not to mention the more ominous questions, like: Is this a second cancer that was there all along but got missed at first? And, what would it mean if a new cancer has started growing during some of the nastiest chemotherapy out there.
Well, I hope this post doesn't bring you all down, but why should I have all the fun alone, right? And, as I keep reminding myself, I really don't know anything yet, so I'm back to practicing patience with not knowing what tomorrow will bring. Hopefully it brings some radioactive sugar to Fargo by 6:30 am.
Thursday, March 17, 2011
Happy St Paddy's Day!
What a day it has been. I had to meet my friend Judy at 7:15 so we could get to Fargo in plenty of time for my appointment this morning. Somehow I managed to do everything except set my alarm last night - I had my iPod all plugged in, alarm ap open with the correct wake up time showing. Everything all set except for the part where I should have changed it from "off" to "on". So I woke up at about 6:50. Luckily all those years of getting ready for school in 5 minutes flat left me with lifelong skills when it comes to getting ready fast. Having almost no hair doesn't hurt in these situations either. I had the pets fed and was out the door at 7:03, grabbed a crappy breakfast and some coffee at the gas station and picked up Judy at 7:15 sharp.
The appointment with the surgeon was awesome. I was so nervous about getting pressured to do more surgery than I wanted, but that did not happen at all. In fact the Doc agreed that my concerns were reasonable, and that the lymph node surgery would not affect my chances of survival. He said that although doing the lymph node dissection is the standard procedure, deciding not to do it is a valid choice and he didn't pressure me at all to go ahead with it. And he ordered more tests so that we will have as much information as possible before making the final decision. You could have knocked me over with a feather, as they say, I never expected this to go so well. So next week I will get a mammogram (and possibly an ultrasound) to see what, if anything, is left of the breast tumor, followed by another PET scan to find out if there is any activity in the lymph nodes. The PET can't pick up very small areas of cancer, but it's the bigger areas that we would need to be worried about. The radiation therapy should be able to knock out small bits that are left. As it stands right now I have the lumpectomy scheduled for March 30, and if the tests show anything bad going it we may change the plan and opt for more extensive surgery after all. It seems that nothing is ever certain in this cancer journey until it over.
I also had blood work done today to make sure I have bounced back from the chemo and everything looked good with that. My liver enzymes are finally back in the normal range, so I could even be out drinking green beer right now, if I was still into that kind of thing. A glass of wine sounds better, but I had to rush off to dog obedience class instead. Maybe tomorrow!
And the final bit of good news for the day - we have a patch of green grass in the front yard! Surrounded by large piles of snow, but it's a start, at least.
The appointment with the surgeon was awesome. I was so nervous about getting pressured to do more surgery than I wanted, but that did not happen at all. In fact the Doc agreed that my concerns were reasonable, and that the lymph node surgery would not affect my chances of survival. He said that although doing the lymph node dissection is the standard procedure, deciding not to do it is a valid choice and he didn't pressure me at all to go ahead with it. And he ordered more tests so that we will have as much information as possible before making the final decision. You could have knocked me over with a feather, as they say, I never expected this to go so well. So next week I will get a mammogram (and possibly an ultrasound) to see what, if anything, is left of the breast tumor, followed by another PET scan to find out if there is any activity in the lymph nodes. The PET can't pick up very small areas of cancer, but it's the bigger areas that we would need to be worried about. The radiation therapy should be able to knock out small bits that are left. As it stands right now I have the lumpectomy scheduled for March 30, and if the tests show anything bad going it we may change the plan and opt for more extensive surgery after all. It seems that nothing is ever certain in this cancer journey until it over.
I also had blood work done today to make sure I have bounced back from the chemo and everything looked good with that. My liver enzymes are finally back in the normal range, so I could even be out drinking green beer right now, if I was still into that kind of thing. A glass of wine sounds better, but I had to rush off to dog obedience class instead. Maybe tomorrow!
And the final bit of good news for the day - we have a patch of green grass in the front yard! Surrounded by large piles of snow, but it's a start, at least.
Sunday, March 6, 2011
Milestones
It seems that I have been getting lazy about blog posts. Rest assured that no news is good news - it just means I haven't been sitting around the house at the computer. I am now done with chemotherapy, having had the final Taxol treatment last Monday. I followed that up with a little x-country ski getaway with some girl friends up at Maplelag. Great ski conditions, great food, great company - it was a really nice break. I managed to not overdo it too much, although it was tough to have to come back early to rest in the afternoon. At least I had the brains not to force myself to keep going and get too worn out.
My hair is officially growing back! I've been seeing signs of growth for several weeks, but in the last week or so it has become noticeable and I have a full head of fuzz filling in the gaps between the stubble of the hair that never fell out. Last weekend I finally got the clippers out and buzzed off all except the very back (where it sticks out below a hat). And this morning I saw that a couple of eyelashes are sprouting. I am down to just a handful of eyelashes now, and have been reminded of my older sister's baby dolls when I look at my eyes. When she was little she used to pull out the eyelashes on her baby dolls, so maybe she would like this new look of mine. At any rate, it seems that I won't have to sport it for too much longer, and I'm just happy that by the time the weather warms up I will no longer be bald. Hats have been fun in the winter, but warmer weather would be much less comfortable.
Now it's time to move on the next step in this journey. I will meet with my Naturopath this week to review how things are going and change up my supplement plan, since I won't need to take some of the things that I have been taking to help with side-effects from the chemo. I'm looking forward to hearing her thoughts on the surgery and the Tamoxifen, which are both coming up for me. It's been so helpful to me to have someone on my team who can give me another viewpoint on treatment options. Surgeons believe deeply in surgery, radiation oncologists believe in radiation treatment, and so on (at least I hope they do, or they wouldn't be doing it). Everyone has their biases, including me, and including the Naturopath. I'm just trying to ensure that the decisions I make are fully thought out and mine, so I won't look back and feel that I was pressured into doing this or that.
I meet with the surgeon on the 17th, and I'm not sure what the schedule will be after that but I expect (and hope) that we will get on with surgery soon after. Since I can't even feel the lump anymore, I expect that a lumpectomy will be possible. How do they do a lumpectomy without a lump, you may ask? Well during the biopsy they put a small titanium clip in to mark the site of the tumor. I was quite distressed over that at the time, as I have never had good luck with metals, at least against my skin. Earings, necklaces, even a watch would irritate my skin and give me a rash. But it seems that this piece of metal has been benign, and indeed the chemo shrunk the tumor to the point where they will need this marker to find the right spot to take out. Then there will be lab work to see if there are still cancer cells active in there or not.
The big question mark for me on the surgery surrounds the lymph nodes. The docs recommend a full lymph node dissection, which means they open up the armpit and take out all of the nodes that are easy to get to. Then the lab sorts through them looking for cancer cells, and the ratio between the number of nodes with cancer and the number without cancer helps them predict the risk of recurrence and spread of the cancer down the line. Supposedly, taking the lymph nodes out also reduces the risk of recurrence and spread of the cancer, but if this is so, then why does the pathology of the nodes that have been removed still predict that risk? The other part that gives me pause, is that there are lymph nodes that showed up on the PET scan as having cancer in them behind my collar bone. Those can't be removed surgically, on so we are counting on the chemo and radiation to get the job done with those. I am feeling pretty strongly that my risk of recurrence or progression is tied to factors other than cutting out the armpit lymph nodes. And the lymph node surgery is far from benign - I won't go into all the details, but when the surgery is done and followed up by radiation, the risk of lifelong side effects is very high - 20% at the lowest, with some studies that look out 20 years finding as high as 70% of women having problems. I can get on board with that if I really believe that it will have life saving benefits for me, but I'm not there right now.
So, we'll see what the next few weeks brings. Maybe there will be more tests that will change my mind. I'm trying to keep that balance between staying open to various options, but still making the best decision for me. I know I've changed my mind numerous times so far, so stay tuned for the next chapter.
And my other big challenge for the next couple of weeks will be to get my head back into my job, with all this other stuff swirling around my brain. I'm feeling better physically, but focusing on work has been challenging to say the least.
My hair is officially growing back! I've been seeing signs of growth for several weeks, but in the last week or so it has become noticeable and I have a full head of fuzz filling in the gaps between the stubble of the hair that never fell out. Last weekend I finally got the clippers out and buzzed off all except the very back (where it sticks out below a hat). And this morning I saw that a couple of eyelashes are sprouting. I am down to just a handful of eyelashes now, and have been reminded of my older sister's baby dolls when I look at my eyes. When she was little she used to pull out the eyelashes on her baby dolls, so maybe she would like this new look of mine. At any rate, it seems that I won't have to sport it for too much longer, and I'm just happy that by the time the weather warms up I will no longer be bald. Hats have been fun in the winter, but warmer weather would be much less comfortable.
Now it's time to move on the next step in this journey. I will meet with my Naturopath this week to review how things are going and change up my supplement plan, since I won't need to take some of the things that I have been taking to help with side-effects from the chemo. I'm looking forward to hearing her thoughts on the surgery and the Tamoxifen, which are both coming up for me. It's been so helpful to me to have someone on my team who can give me another viewpoint on treatment options. Surgeons believe deeply in surgery, radiation oncologists believe in radiation treatment, and so on (at least I hope they do, or they wouldn't be doing it). Everyone has their biases, including me, and including the Naturopath. I'm just trying to ensure that the decisions I make are fully thought out and mine, so I won't look back and feel that I was pressured into doing this or that.
I meet with the surgeon on the 17th, and I'm not sure what the schedule will be after that but I expect (and hope) that we will get on with surgery soon after. Since I can't even feel the lump anymore, I expect that a lumpectomy will be possible. How do they do a lumpectomy without a lump, you may ask? Well during the biopsy they put a small titanium clip in to mark the site of the tumor. I was quite distressed over that at the time, as I have never had good luck with metals, at least against my skin. Earings, necklaces, even a watch would irritate my skin and give me a rash. But it seems that this piece of metal has been benign, and indeed the chemo shrunk the tumor to the point where they will need this marker to find the right spot to take out. Then there will be lab work to see if there are still cancer cells active in there or not.
The big question mark for me on the surgery surrounds the lymph nodes. The docs recommend a full lymph node dissection, which means they open up the armpit and take out all of the nodes that are easy to get to. Then the lab sorts through them looking for cancer cells, and the ratio between the number of nodes with cancer and the number without cancer helps them predict the risk of recurrence and spread of the cancer down the line. Supposedly, taking the lymph nodes out also reduces the risk of recurrence and spread of the cancer, but if this is so, then why does the pathology of the nodes that have been removed still predict that risk? The other part that gives me pause, is that there are lymph nodes that showed up on the PET scan as having cancer in them behind my collar bone. Those can't be removed surgically, on so we are counting on the chemo and radiation to get the job done with those. I am feeling pretty strongly that my risk of recurrence or progression is tied to factors other than cutting out the armpit lymph nodes. And the lymph node surgery is far from benign - I won't go into all the details, but when the surgery is done and followed up by radiation, the risk of lifelong side effects is very high - 20% at the lowest, with some studies that look out 20 years finding as high as 70% of women having problems. I can get on board with that if I really believe that it will have life saving benefits for me, but I'm not there right now.
So, we'll see what the next few weeks brings. Maybe there will be more tests that will change my mind. I'm trying to keep that balance between staying open to various options, but still making the best decision for me. I know I've changed my mind numerous times so far, so stay tuned for the next chapter.
And my other big challenge for the next couple of weeks will be to get my head back into my job, with all this other stuff swirling around my brain. I'm feeling better physically, but focusing on work has been challenging to say the least.
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