I am disappointed in and somewhat ticked off at my oncologist. I am going to have to become less trusting (what in the hell was I thinking, to go trusting a doctor, anyhow) and even more clearly assertive. Or something.
I may not be able to recount all the details correctly, but I guess it all started when the doctor asked me if my tumor tissue had been tested for EGFR at MD Anderson. I was pretty sure it had not been, since it was like pulling teeth to get Johns Hopkins Hospital (JHH) to send slides and I was pretty sure slides would not be sufficient to do any testing. I never checked, however, and the doctor did not ask me about it again. I kinda forgot about that exchange. Turns out that she asked this because there is a drug (Tarceva) that can be very helpful for treating cancer which has the EGFR mutation (and there is some indication that it might be good even for treating cancer which does not have that mutation). The side effects include rashes, diarrhea, and fatigue. (Which sounds waaaaaaay better than chemo!). The doctor mentioned that there was a clinical trial on Tarceva at MD Anderson.
After researching Tarceva, finding out that my tumor tissue was never tested, writing a letter to the doctor (at her request) to request the test, and being told that I'd have to wait "weeks" for the result, I also did some looking around and found the Tarceva trial at MDA. I read it thoroughly and it looked like I met all the requirements and did not meet any of the disqualifiers. Yesterday I called them to find out if I could join the trial and was told that the trial had met its enrollment requirement and was closed last week; they just hadn't taken it off the web site yet. However, the nurse there also mentioned that Tarceva was now "standard of care" and I could get it from my doctor.
I emailed my doctor to ask about getting Tarceva and her response was "I didn't talk with you about it at our last conversation because you were against doing systemic treatment." My reaction was one of shock and surprise! I never, ever told her that I was against systemic treatment! I may have said something like "Gosh, I never want to do chemo again, haha," but I certainly never said that I would rather have surgery than take a pill with minimal side effects! Why on earth did she interpret my words like that?!
Oh well, it will not really help to be angry. So now I am going to send her an email that clearly and officially states that I want to hear about all treatment options. In the future I will make sure to say that at every visit. And I guess I am going to have to step up my research into treatment options so that I can ask good questions and get as much information out of her as possible. Always a good policy, of course. I just got so scared and overwhelmed that I forgot to subscribe to my usual policy of doctors-know-nothing-so-I-must-research-everything for a while...
Sigh.
Tuesday, April 22, 2008
Friday, April 18, 2008
Contacting Old Friends
I have recently been Googling old friends. I like to send them an email to say hello and then catch up. I suppose I am driven to do this because I feel like I am going to die. Or maybe because I am in my mid-30s (is this normal behavior for mid-30s?!). I really like contacting old friends and I hope that my reaching out will lead to continued friendships. (The ultimate would be if I got an old friend to come visit!)
My Body, My Self
I was talking on the phone to a friend of mine this afternoon and I went into a topic that I do not think I have discussed with anyone (except maybe Captain Obvious, here and there) and I thought I should share it here.
As you know, I had lung surgery in September 2007 (a lung resection, in medical jargon). This surgery had several repercussions, including a large scar, reduced lung capacity, and nerve damage. I may have mentioned each of these things in passing, but allow my to say that I feel the effects of the surgery every day and they suck. I have reason to walk up stairs in our house several times a day and every time I walk up them, I need a few minutes to catch my breath. Every time I take Captain Adorable for a walk to the playground by the lake I sweat and pant as well. The sweating may be because I am ovewrweight, bu the panting is from the hills. I know this because when we were in New Orleans I walked for miles (yes, it was checked on the map, I walked multiple miles) with Captain Adorable on my back and never panted unless we had to walk up a hill. I sweated like a champ, on a flat trail or on a hill! ;)
Anyhow, what I was saying to my friend was that the lung surgery has affected the way I feel about my body pretty profoundly. Firstly, (everyone says this is only cosmetic) I have two big purple (!) scars on my back. This makes me feel uncomfortable about wearing a bathing suit or any garment which would show the scar. Not that the issue comes up much, but there are times when you are alone and naked (before or after a shower, for instance) and a giant purple scar is rather jarring to the eye (and the self-perception).
The other big thing is the nerve damage. My right breast (the surgery was on my right lung) is numb and at the same time, overly painful. Most of the time, when it is touched, I cannot feel it, but sometimes and in certain spots, even the lightest touch is quite painful. This comes up most often when I am putting Captain Adorable to bed and he is lying right up against me and then rolls over (on top of) on my boob. Ugh.
As you might imagine, a big yucky scar, nerve damage, and a numb/painful breast affect my self image and also...uh...the way I perceive all touches, and definitely intimate touches. (To spell it out, those touches are now stressful and bad for me). Suffice it to say that I prefer to keep a shirt on at all times. I hate my scar. It reminds me of sad times and scary things. My nerve damage (totally normal side effect of the surgery, according to the surgeon) makes me extra sensitive and extra protective of myself.
My shortness of breath is embarrassing in different ways. I am overweight, as I mentioned above, but I am not in terrible shape. The lung capacity tests show that indeed, my lung capacity has decreased since surgery and it is not helped by inhalers. (No shit, sherlock, I had 2/3 of a lung removed!) However, when I take Captain Adorable for a walk (or, well, anywhere) I am often embarrassed by the amount of panting I have to do. I feel that people perceive me as fat and out of shape when really the culprit is my missing lung tissue...
(Which leads to another thought--why is it that lately every time I tell someone I have lung cancer, that person says "But you look good." I didn't say I had ugly disease, dammit. ;) For the most part I like to be told I look good, so please don't stop yourself from saying so if that is your opinion!)
Anyhow, the point of this post was, my self image has been seriously affected by lung surgery and I am just now (7 months later) beginning to see the reprecussions on my body and on my self image.
As you know, I had lung surgery in September 2007 (a lung resection, in medical jargon). This surgery had several repercussions, including a large scar, reduced lung capacity, and nerve damage. I may have mentioned each of these things in passing, but allow my to say that I feel the effects of the surgery every day and they suck. I have reason to walk up stairs in our house several times a day and every time I walk up them, I need a few minutes to catch my breath. Every time I take Captain Adorable for a walk to the playground by the lake I sweat and pant as well. The sweating may be because I am ovewrweight, bu the panting is from the hills. I know this because when we were in New Orleans I walked for miles (yes, it was checked on the map, I walked multiple miles) with Captain Adorable on my back and never panted unless we had to walk up a hill. I sweated like a champ, on a flat trail or on a hill! ;)
Anyhow, what I was saying to my friend was that the lung surgery has affected the way I feel about my body pretty profoundly. Firstly, (everyone says this is only cosmetic) I have two big purple (!) scars on my back. This makes me feel uncomfortable about wearing a bathing suit or any garment which would show the scar. Not that the issue comes up much, but there are times when you are alone and naked (before or after a shower, for instance) and a giant purple scar is rather jarring to the eye (and the self-perception).
The other big thing is the nerve damage. My right breast (the surgery was on my right lung) is numb and at the same time, overly painful. Most of the time, when it is touched, I cannot feel it, but sometimes and in certain spots, even the lightest touch is quite painful. This comes up most often when I am putting Captain Adorable to bed and he is lying right up against me and then rolls over (on top of) on my boob. Ugh.
As you might imagine, a big yucky scar, nerve damage, and a numb/painful breast affect my self image and also...uh...the way I perceive all touches, and definitely intimate touches. (To spell it out, those touches are now stressful and bad for me). Suffice it to say that I prefer to keep a shirt on at all times. I hate my scar. It reminds me of sad times and scary things. My nerve damage (totally normal side effect of the surgery, according to the surgeon) makes me extra sensitive and extra protective of myself.
My shortness of breath is embarrassing in different ways. I am overweight, as I mentioned above, but I am not in terrible shape. The lung capacity tests show that indeed, my lung capacity has decreased since surgery and it is not helped by inhalers. (No shit, sherlock, I had 2/3 of a lung removed!) However, when I take Captain Adorable for a walk (or, well, anywhere) I am often embarrassed by the amount of panting I have to do. I feel that people perceive me as fat and out of shape when really the culprit is my missing lung tissue...
(Which leads to another thought--why is it that lately every time I tell someone I have lung cancer, that person says "But you look good." I didn't say I had ugly disease, dammit. ;) For the most part I like to be told I look good, so please don't stop yourself from saying so if that is your opinion!)
Anyhow, the point of this post was, my self image has been seriously affected by lung surgery and I am just now (7 months later) beginning to see the reprecussions on my body and on my self image.
Friday, April 11, 2008
Just for the Sake of Clarity
I guess I never made it clear in the past, but I have been to MD Anderson in Houston, Texas already. We went there in late October-early November 2007 in order to get a second opinion. I wrote about the experience at the time, but never said that it was MD Anderson. I really liked the oncologist there (better than my oncologist here) but because the second opinion was almost exactly the same as the first I decided to pursue treatment here in Maryland. I really liked MD Anderson and felt really well treated there. I have not felt poorly treated at Johns Hopkins, where I am being treated now, just a more like a number than I felt at MD Anderson. I also really liked the amount of information I was given at MD Anderson, and the fact that I was introduced to the entire team on my first (and so far, only) visit. I've still never met the social worker at Johns Hopkins (or is the person I am thinking of actually a psychiatric nurse? Not sure, which just proves my point!).
No one has come by to see the house yet. It is a little stressful to keep the place super clean and perfect but manageable so far. :)
No one has come by to see the house yet. It is a little stressful to keep the place super clean and perfect but manageable so far. :)
Thursday, April 10, 2008
Q and A With My Oncologist
I sent the following eight questions to my oncologist in an email and she was good enough to call me up and answer them one by one. I took notes on my laptop (I guess law school was good for something--taught me how to take notes really fast!) and have modified them somewhat for sake of clarity and privacy when posting them here. I sent her these questions in response to her phone call a couple of nights ago when she told me that although the nodules in my lungs (one in each) did not light up on the PET scan, they are most likely cancer and I would have to decide what to do now. I decided to wait for 3 months and then talk to a radiologist and a lung surgeon (same one who did my last lung surgery) about getting these things out of me. This is not exactly what she said--as I said above, I made some changes and left some things out.
1) Are the nodules in my lungs cancer? What factors influence the answer?
Probably but they are not changing [growing] by leaps and bounds. The only way we can tell [if they are cancer] is by removing them. They are too small for a needle biopsy. They are too much on the periphery for a broncoscopy. The type of tumor you have does not always light up on PET so we can't exclude cancer because of the negative PET.
2) Why wait 3 months to address them? Won't waiting increase the chance of metastasis?
This is personal preference. We can cut 'em out but most likely they will come back in other areas. Pretty much equal [waiting versus not waiting]. You have plenty of lung capacity left and young healthy people don't have a problem [healing from lung surgery]. Not easy to tell if waiting will increase metastasis. These could be tiny primaries [so not metastasis from the big tumor I have removed in September].
3) Are these nodules metastasized from the big tumor?
They could be tiny primaries. Waiting is not going to increase chance of metastasis. We don't know if they are secondary or primary.
4) If they are secondary tumors, then why is it that I have 3 secondary tumors all in my lungs only and nothing in the rest of my body?
Chemo was an attempt to treat everything--the rest of the body where there may be cancer that is so small we can't see it. Chemo did not (if they are cancer) affect these. I [the oncologist] am more willing to use more local methods to treat these small things like ablation or surgery. If we went with surgery, they would just take wedges out (segments rather than lobes). Radiologists specialize in ablation, and in your case they would insert a needle with an umbrella-like (the inside of the umbrella) aperture into the tumor and then freeze or burn it (cauterize it) to kill it.
5) Does the fact that metastasis is limited to my lungs affect the way it should be treated?
Because it is limited to your lungs, I am more willing to use local methods to treat it.
6) Perhaps it is now time for me to seek a clinical trial. Do you know of any that I would qualify for?
I suggest you check with MD Anderson [in Houston, Texas] to see if they sent off the EGFR mutation. MD Anderson might have a clinical trial using Tarciva (a pill), which blocks the EGFR pathway.
7) What is your opinion of the immunization trials where a vaccine-type reagent is made from a tumor to use in attempts to instruct the cells to reject it? I know that type of treatment requires tumor cells, so if I were going to pursue that treatment it would have to be done before any cauterization is undertaken.
There is good data with vaccine treatment from Glaxo Smith Kline. They need tumor tissue because they test the tumor to see if it excretes what they will give you the vaccine against. Most likely the vaccine will not help by itself. The thought is there is some kind of tolerance that blocks people's immune system and don't let the lymphocytes kill the tumor. You have no tumors more than one cm in size which will limit the trials you are eligible for. (I do not remember exactly how she put it, but the oncologist pretty much said she did not have much hope for this type of therapy.)
8) You seemed really calm on the phone. Is that because this is not too serious or because you are very used to having to deliver this type of news?
If these are cancer, they are not very big and are not the cause of your cough or shortness of breath (my shortness of breath is due to the fact that my lung capacity was reduced when the two lower lobes of my right lung were removed in September 2007!). We have some time to make a decision on what to do. Both the surgeon and the radiologist are willing to do it if you are willing to do it...
I do not recommend radiation therapy for you. Radiation is not a one stop shop; you have to go back. Also, your tumors are so small. It would be better in your case to do surgery or ablation. Lungs are more difficult to do radiation on because lungs move.
I should add that the oncologist did emphasize (I think I noted it once above) that the cancer will be back. Once these tumors/nodules are removed, I should expect to see others eventually. The fact that I have good lung capacity is good (from her perspective) because it means that they can open me up and whittle on my lungs a few more times. She did not say that--I am saying that because that is one of my worst fears and it is coming true. Now that I have cancer, the allopaths (The Medical Establishment) have their hooks in me because their treatments are the best/most effectively proven. I have no choice but to submit to their poking and probing and cutting. And I will have to be grateful for it since it will keep me alive to be with my darling boy a bit longer and a bit longer and a bit longer...
So now I have enlisted the help of my FIL. He is finding out for me if my tumor was ever tested by MD Anderson for EGFR and if not, if it can be. Once we know that, we can perhaps pursue this clinical trial. Or not, if it is not right for me. If we do a clinical trial which involves a lot of traveling, we're going to have to take the house off the market. Did I mention the house went on the market yesterday?
1) Are the nodules in my lungs cancer? What factors influence the answer?
Probably but they are not changing [growing] by leaps and bounds. The only way we can tell [if they are cancer] is by removing them. They are too small for a needle biopsy. They are too much on the periphery for a broncoscopy. The type of tumor you have does not always light up on PET so we can't exclude cancer because of the negative PET.
2) Why wait 3 months to address them? Won't waiting increase the chance of metastasis?
This is personal preference. We can cut 'em out but most likely they will come back in other areas. Pretty much equal [waiting versus not waiting]. You have plenty of lung capacity left and young healthy people don't have a problem [healing from lung surgery]. Not easy to tell if waiting will increase metastasis. These could be tiny primaries [so not metastasis from the big tumor I have removed in September].
3) Are these nodules metastasized from the big tumor?
They could be tiny primaries. Waiting is not going to increase chance of metastasis. We don't know if they are secondary or primary.
4) If they are secondary tumors, then why is it that I have 3 secondary tumors all in my lungs only and nothing in the rest of my body?
Chemo was an attempt to treat everything--the rest of the body where there may be cancer that is so small we can't see it. Chemo did not (if they are cancer) affect these. I [the oncologist] am more willing to use more local methods to treat these small things like ablation or surgery. If we went with surgery, they would just take wedges out (segments rather than lobes). Radiologists specialize in ablation, and in your case they would insert a needle with an umbrella-like (the inside of the umbrella) aperture into the tumor and then freeze or burn it (cauterize it) to kill it.
5) Does the fact that metastasis is limited to my lungs affect the way it should be treated?
Because it is limited to your lungs, I am more willing to use local methods to treat it.
6) Perhaps it is now time for me to seek a clinical trial. Do you know of any that I would qualify for?
I suggest you check with MD Anderson [in Houston, Texas] to see if they sent off the EGFR mutation. MD Anderson might have a clinical trial using Tarciva (a pill), which blocks the EGFR pathway.
7) What is your opinion of the immunization trials where a vaccine-type reagent is made from a tumor to use in attempts to instruct the cells to reject it? I know that type of treatment requires tumor cells, so if I were going to pursue that treatment it would have to be done before any cauterization is undertaken.
There is good data with vaccine treatment from Glaxo Smith Kline. They need tumor tissue because they test the tumor to see if it excretes what they will give you the vaccine against. Most likely the vaccine will not help by itself. The thought is there is some kind of tolerance that blocks people's immune system and don't let the lymphocytes kill the tumor. You have no tumors more than one cm in size which will limit the trials you are eligible for. (I do not remember exactly how she put it, but the oncologist pretty much said she did not have much hope for this type of therapy.)
8) You seemed really calm on the phone. Is that because this is not too serious or because you are very used to having to deliver this type of news?
If these are cancer, they are not very big and are not the cause of your cough or shortness of breath (my shortness of breath is due to the fact that my lung capacity was reduced when the two lower lobes of my right lung were removed in September 2007!). We have some time to make a decision on what to do. Both the surgeon and the radiologist are willing to do it if you are willing to do it...
I do not recommend radiation therapy for you. Radiation is not a one stop shop; you have to go back. Also, your tumors are so small. It would be better in your case to do surgery or ablation. Lungs are more difficult to do radiation on because lungs move.
I should add that the oncologist did emphasize (I think I noted it once above) that the cancer will be back. Once these tumors/nodules are removed, I should expect to see others eventually. The fact that I have good lung capacity is good (from her perspective) because it means that they can open me up and whittle on my lungs a few more times. She did not say that--I am saying that because that is one of my worst fears and it is coming true. Now that I have cancer, the allopaths (The Medical Establishment) have their hooks in me because their treatments are the best/most effectively proven. I have no choice but to submit to their poking and probing and cutting. And I will have to be grateful for it since it will keep me alive to be with my darling boy a bit longer and a bit longer and a bit longer...
So now I have enlisted the help of my FIL. He is finding out for me if my tumor was ever tested by MD Anderson for EGFR and if not, if it can be. Once we know that, we can perhaps pursue this clinical trial. Or not, if it is not right for me. If we do a clinical trial which involves a lot of traveling, we're going to have to take the house off the market. Did I mention the house went on the market yesterday?
Tuesday, April 8, 2008
Looks Like Bad News and More Waiting
The oncologist called last night while I was cooking dinner. It turns out the mucocinous variant of adenocarcinoma, which is what I have, does not take up glucose. Therefore it will not light up on a PET scan. Therefore the fact that the nodules did not light up means nothing. It might have meant something if I had had a PET scan prior to surgery and that cancer had lit up, but I did not have one (my decision) and so we do not know if these nodules are cancerous or not. But it looks like they are. Nodules don't just form and grow in your lungs for no reason and if you already have lung cancer, well, it seems fairly obvious what the conclusion is. They're probably cancer.
So, as of right now, I am going to wait 3 months and then have another CT scan (which was my normally scheduled time for another one anyhow). At that time we will decide whether to have surgery or some other intervention. Will probably need a biopsy.
Not surprisingly, I feel worried and sad, but, surprisingly, I did not cry. Capt. Obvious cried and left to go buy some wine almost immediately after the phone call.
In other not so great news, Captain Adorable did not gain any weight since his last appointment 6 weeks ago. I believe that if he was still getting breast milk he would not be having this problem and I feel (I know I use this word a lot) robbed. If only I could have been breast feeding him all these months. We would not have the drinking problem (getting a bit better now...maybe...he certainly does not drink anywhere near what I would like him to!) and we would not have this gaining weight problem. Damn cancer is hurting me and hurting my beautiful little son. Damn fucking cancer.
So, as of right now, I am going to wait 3 months and then have another CT scan (which was my normally scheduled time for another one anyhow). At that time we will decide whether to have surgery or some other intervention. Will probably need a biopsy.
Not surprisingly, I feel worried and sad, but, surprisingly, I did not cry. Capt. Obvious cried and left to go buy some wine almost immediately after the phone call.
In other not so great news, Captain Adorable did not gain any weight since his last appointment 6 weeks ago. I believe that if he was still getting breast milk he would not be having this problem and I feel (I know I use this word a lot) robbed. If only I could have been breast feeding him all these months. We would not have the drinking problem (getting a bit better now...maybe...he certainly does not drink anywhere near what I would like him to!) and we would not have this gaining weight problem. Damn cancer is hurting me and hurting my beautiful little son. Damn fucking cancer.
Friday, April 4, 2008
Good News, Bad News
Well once again I am in the position of having both good news and bad news. Once again I am not too happy about the good news because I do not know if it is canceled by the bad news or not.
Good News:
The nodules did not light up on the PET scan.
Bad News
The nodules are indeed bigger.
Only the preliminary report was in and the doctors were a bit confused by this contradiction. On Monday perhaps the final report will be in and perhaps my doctor can tell me more...the nodules are only a centimeter, but they may be big enough to biopsy. I really hope I can escape that procedure. Perhaps we can just wait another 3 months, till the nex scheduled CT scan and see if they are bigger again and then make a decision. That 3 months would give me a little bit of freedom--enough time to enjoy the spring and beginning of the summer--perhaps even enough time to sell this house and buy and move into a new one...
Good News:
The nodules did not light up on the PET scan.
Bad News
The nodules are indeed bigger.
Only the preliminary report was in and the doctors were a bit confused by this contradiction. On Monday perhaps the final report will be in and perhaps my doctor can tell me more...the nodules are only a centimeter, but they may be big enough to biopsy. I really hope I can escape that procedure. Perhaps we can just wait another 3 months, till the nex scheduled CT scan and see if they are bigger again and then make a decision. That 3 months would give me a little bit of freedom--enough time to enjoy the spring and beginning of the summer--perhaps even enough time to sell this house and buy and move into a new one...
Tuesday, April 1, 2008
Delays
Because we need to wait for the results of the PET scan on Thursday, we're putting some things off. For instance, we were going to put our house on the market this week, but now we are going to delay that. We were going to get out and do some more house hunting and now we are going to delay that, too.
There were some tears shed last night by both me and Captain Obvious. I cried about it a bit today, too. I am scared and I just want to be healthy for a while. Just peaceful and happy for a few months or even a year.
We're still pushing ahead on getting the house ready for the market, though. Still on track, just a slower track. Still living my life.
There were some tears shed last night by both me and Captain Obvious. I cried about it a bit today, too. I am scared and I just want to be healthy for a while. Just peaceful and happy for a few months or even a year.
We're still pushing ahead on getting the house ready for the market, though. Still on track, just a slower track. Still living my life.
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