I had the PET/CT scan yesterday afternoon. Then today, Dr. S presented my case at the tumor conference. This afternoon, Beth (nurse practitioner) called to tell me what they recommended. First of all, the scan showed that the cancer is now located in a line of lymph nodes from my neck to my abdomen. This lymph chain runs along my aorta, but it has not invaded my aorta. It is just in the nodes. There is also a suspicious spot in my lower right lung, but they think it's just inflammation. I have a feeling it is cancer, too, can't tell why, just a feeling. She said the recommendation from the board is to have radiation and chemo. I have an appointment on Thursday to meet with the radiation doctor. I have never had radiation before, but mom has. She's been sort of paving the way, so a lot of this isn't new to me. Thanks, Mom! I'm actually glad to be getting the radiation because it is supposed to help with the pain. And my neck and shoulder have really been bothering me. I almost want to wear my arm in a sling to help relieve the pressure the tumor is causing.
As for the chemo, the recommendation is to repeat the Taxol/Carboplatin that I had originally. Since my recurrence happened more than 12 months ago, the original treatment is considered "successful" and is expected to "work again". The problem is, my definition of "successful" and "work" are apparently not the same as theirs. Right now I am feeling like those 6 rounds of chemo I had in 2007 were a total waste. All those toxins and poisons I had injected into my body, all those days spent in misery on my couch, all those months lost, my hair, my eyebrows, and all the things I can't even remember, I don't want to remember . . . I got through it all because it was supposed to be my guarantee that I'd never have to do it again. Now, I have to do it again.
Dr. S would like me to start my treatments as soon as possible. But after my appt with the radiation dr on Thursday, I made an appt to meet with Dr. S and discuss other options. He is a very open and understanding dr and he gets that I need to be on board with whatever treatment I get. He would even suggest other drs if I decide to get a second opinion. Right now I feel like I can talk with him about my options and he will give me the best choices. And if it turns out to be Taxol/Carbo again, so be it. I'll do whatever I have to do, of course. I just want to be around long enough to see my girls grow up. If that means a long, drawn-out cancer battle, I'll do it and I'll try my best not to let it affect my family. That's the worst part of cancer, it's got a ripple effect.
So, more news will be coming on Thursday. I'll write again as soon as something is decided.
Tuesday, June 15, 2010
Saturday, June 12, 2010
Scan will be Monday
My PET/CT scan will be on Monday at 3:00. We'll find out then how much cancer there is. Dr. S will call me on Tuesday with the results and with his recommendation on treatment protocol. He mentioned repeating the original chemo which was the combination Taxol/Carboplatin. This time, though, instead of having one mega dose every three weeks, I could have a smaller dose every week for 3 weeks. He did say it would take about 12 weeks, then he would do another scan to see if it was working.
My thinking is this - my original cancer was essentially removed with surgery since there was no evidence of disease after my total hysterectomy, appendectomy, omenectomy, etc. The Taxol/Carbo chemo treatments were only given as insurance that any microscopic cells possibly lurking undetected would be caught and killed. So, fast-forward 3 years and cancer is back which leads me to believe that there were, in fact, microscopic cells lurking undetected back then and the Taxol/Carbo DID NOT KILL THEM! Why, then, should I believe another 6 rounds of it will kill it now???
I know that cancer treatment is mostly a guessing game, a series of trial-and-error attempts. Dr. S talked about how they have an arsenal of weapons against cancer, but they don't want to exhaust every means too soon and have nothing left if it keeps getting worse. But again, my thinking is this - if you have an ant pile with a few ants, you can start by spraying it with weak bug spray. But if it doesn't work, then the pile just gets bigger. So you try a stronger spray. Still doesn't work and the pile keeps getting bigger. By the time you finally break out the Amdro, you've got half your yard infested with ants and all your grass ruined by their piles. Do I want to risk putting my body (and family and friends) through that? Am I ready for a long cancer battle?
I'm only 40 years old. Caroline is only 8 and Rachel Rose is only 5. It just makes me mad that there is not a quick fix to this! I mean, it's 2010, they should have a cure by now!
Did I mention I'm at the anger stage right now?
My thinking is this - my original cancer was essentially removed with surgery since there was no evidence of disease after my total hysterectomy, appendectomy, omenectomy, etc. The Taxol/Carbo chemo treatments were only given as insurance that any microscopic cells possibly lurking undetected would be caught and killed. So, fast-forward 3 years and cancer is back which leads me to believe that there were, in fact, microscopic cells lurking undetected back then and the Taxol/Carbo DID NOT KILL THEM! Why, then, should I believe another 6 rounds of it will kill it now???
I know that cancer treatment is mostly a guessing game, a series of trial-and-error attempts. Dr. S talked about how they have an arsenal of weapons against cancer, but they don't want to exhaust every means too soon and have nothing left if it keeps getting worse. But again, my thinking is this - if you have an ant pile with a few ants, you can start by spraying it with weak bug spray. But if it doesn't work, then the pile just gets bigger. So you try a stronger spray. Still doesn't work and the pile keeps getting bigger. By the time you finally break out the Amdro, you've got half your yard infested with ants and all your grass ruined by their piles. Do I want to risk putting my body (and family and friends) through that? Am I ready for a long cancer battle?
I'm only 40 years old. Caroline is only 8 and Rachel Rose is only 5. It just makes me mad that there is not a quick fix to this! I mean, it's 2010, they should have a cure by now!
Did I mention I'm at the anger stage right now?
Thursday, June 10, 2010
Biopsy results
"Right supraclavicular mass . . . metastatic adenocarcinoma . . . the specimen is compared with patient's previous right ovarian cyst that demonstrated endometrioid adenocarcinoma . . . they have similar histology."
So basically, all that is saying is my original cancer has come back in my neck lymph node. I will go for a PET/CT scan to determine the extent of its spread.
After the surgeon told me the results and gave me a copy of the report, John and I went next door to Dr. Salmieri's office, my oncologist. They had already received the report. The nurse let me back in to see him in his office, even though I didn't have an appointment. He explained that there is a 10% chance of stage 1 cancer recurring. Even though I took every precaution - surgery to remove all susceptible organs and 6 rounds of chemo (some doctors only recommend 3 rounds for stage 1 and some don't recommend any chemo at all!) - it came back anyway. He explained that there are 3 time periods they look at with recurrence. If it comes back within 6 months of initial treatment, they try another chemo. If it comes back 12 months later, they can re-treat with the same chemo or try another. And if it comes back 2 years later (like mine), they usually re-treat with the same chemo. They rationalize that it worked for 2 years, maybe it will work for another two.
He also said radiation was an option depending on the extent of metastases (spread). He mentioned using radiation or chemo to shrink the mass in my neck, then using the cyberknife to eliminate it. But, of coure, all this depends on how much cancer there is. The PET/CT scan will show all the places in my body that have cancer. I'm waiting right now for a call back from the scheduling office to see how soon I can get it done.
Dr. Salmieri will present my case to the tumor board where several doctors will weigh in with their recommendations. He's going to call me on Tuesday with the next step.
It's been a bad day, I'll write more later. Thanks for reading!
So basically, all that is saying is my original cancer has come back in my neck lymph node. I will go for a PET/CT scan to determine the extent of its spread.
After the surgeon told me the results and gave me a copy of the report, John and I went next door to Dr. Salmieri's office, my oncologist. They had already received the report. The nurse let me back in to see him in his office, even though I didn't have an appointment. He explained that there is a 10% chance of stage 1 cancer recurring. Even though I took every precaution - surgery to remove all susceptible organs and 6 rounds of chemo (some doctors only recommend 3 rounds for stage 1 and some don't recommend any chemo at all!) - it came back anyway. He explained that there are 3 time periods they look at with recurrence. If it comes back within 6 months of initial treatment, they try another chemo. If it comes back 12 months later, they can re-treat with the same chemo or try another. And if it comes back 2 years later (like mine), they usually re-treat with the same chemo. They rationalize that it worked for 2 years, maybe it will work for another two.
He also said radiation was an option depending on the extent of metastases (spread). He mentioned using radiation or chemo to shrink the mass in my neck, then using the cyberknife to eliminate it. But, of coure, all this depends on how much cancer there is. The PET/CT scan will show all the places in my body that have cancer. I'm waiting right now for a call back from the scheduling office to see how soon I can get it done.
Dr. Salmieri will present my case to the tumor board where several doctors will weigh in with their recommendations. He's going to call me on Tuesday with the next step.
It's been a bad day, I'll write more later. Thanks for reading!
Wednesday, June 9, 2010
Biopsy done, results tomorrow, anxiety overflow!
The biopsy went well, but when the dr came back he said he saw some abnormal cells. Instead of calling me with the results, he wants me to come in to the office on Thursday at 12:40. That can't be good. I'll post with news as soon as I can.
Saturday, June 5, 2010
Waiting is hard
I keep reading on the internet . . . nothing is positive. I almost wish my connection would go down so I couldn't get online, but then that might be worse. I'm a believer that information is good, it prepares you for all the possibilities, good and bad. But there's a fine line between making yourself prepared and making yourself panicked!
Here's what I'm worrying about -
1. Supraclavicular lymph node enlargement has a 90% chance of malignancy.
2. Hard, unmoveable lumps that are matted together like mine are signs of malignancy.
3. The left node receives lymph flow from the abdomen and is a common site for ovarian cancer metastasis.
4. CA 125 usually becomes elevated as an early indication of recurrence before a tumor is discovered.
5. When ovarian cancer spreads to distant sites it is stage IV, and when it recurs it's treated with more CHEMO!!!
6. The average duration of survival after recurrence of ovarian cancer is 12 to 18 months. Fewer than one in ten patients survive beyond five years! www.news.cancerconnect.com/recurrent-ovarian-cancer
I remember when I was 9 weeks pregnant with Caroline, I began bleeding one morning. I knew that the main cause of first trimester bleeding was miscarriage. On the way to the dr, I prayed to God asking Him to find another reason for this bleed, anything but the obvious reason. I was asking for a loophole. When we arrived and the dr did an ultrasound, we saw a tiny, tiny baby and she was fine! Her heart was beating and she was perfect. I asked what caused the bleed and I was told that since we put back 2 embryos and only one of them developed, the bleeding was caused when the other embryo passed. It had not grown, but had probably partially implanted. It was considered a "vanishing twin" and was technically a miscarriage, but it was the second embryo, the one that we thought we'd lost from the beginning. We still had our baby, Caroline was okay. My reaction was, "Thank you, God!" He had found another reason for the bleed, a loophole. The obvious reason, the logical outcome, was avoided. I wasn't miscarrying Caroline. She was fine and went on to be a perfectly healthy baby and an amazing little girl (now big girl, but still perfect!).
So I know God can do anything. I just hate to ask Him again, I mean, how many near misses can I get! I'm hoping for one more.
Here's what I'm worrying about -
1. Supraclavicular lymph node enlargement has a 90% chance of malignancy.
2. Hard, unmoveable lumps that are matted together like mine are signs of malignancy.
3. The left node receives lymph flow from the abdomen and is a common site for ovarian cancer metastasis.
4. CA 125 usually becomes elevated as an early indication of recurrence before a tumor is discovered.
5. When ovarian cancer spreads to distant sites it is stage IV, and when it recurs it's treated with more CHEMO!!!
6. The average duration of survival after recurrence of ovarian cancer is 12 to 18 months. Fewer than one in ten patients survive beyond five years! www.news.cancerconnect.com/recurrent-ovarian-cancer
I remember when I was 9 weeks pregnant with Caroline, I began bleeding one morning. I knew that the main cause of first trimester bleeding was miscarriage. On the way to the dr, I prayed to God asking Him to find another reason for this bleed, anything but the obvious reason. I was asking for a loophole. When we arrived and the dr did an ultrasound, we saw a tiny, tiny baby and she was fine! Her heart was beating and she was perfect. I asked what caused the bleed and I was told that since we put back 2 embryos and only one of them developed, the bleeding was caused when the other embryo passed. It had not grown, but had probably partially implanted. It was considered a "vanishing twin" and was technically a miscarriage, but it was the second embryo, the one that we thought we'd lost from the beginning. We still had our baby, Caroline was okay. My reaction was, "Thank you, God!" He had found another reason for the bleed, a loophole. The obvious reason, the logical outcome, was avoided. I wasn't miscarrying Caroline. She was fine and went on to be a perfectly healthy baby and an amazing little girl (now big girl, but still perfect!).
So I know God can do anything. I just hate to ask Him again, I mean, how many near misses can I get! I'm hoping for one more.
Friday, June 4, 2010
Biopsy scheduled
My biopsy is scheduled for Tuesday. Dr. Martin will be doing it at Gwinnett Medical (gawd, I dread going back to that place!!!). He will have to take out a piece of the mass, not just a needle biopsy like I was hoping, but it will be outpatient, at least. I should know the results by Friday next week. Will keep you all posted.
Wednesday, June 2, 2010
Not happy to be back
I have to say, I haven’t missed writing in this blog . . . and I’m not real happy to be back here. Hopefully, it will be a short stay. But here goes . . .
Since last fall my CA 125 (ovarian cancer test) has been going up – from 7 to 14 to 52 to 100 – under 30 is considered normal. I had a CT scan on March 30 and nothing serious showed up, just some tiny nodules in my lungs and an occlusion in my right subclavian vein. I had the vein thing checked out and it was fine. Then in April I noticed my left eye was acting weird – droopy eyelid and pupil much smaller than my right. I went to an ophthalmologist who diagnosed Horner’s syndrome. He said it’s not much of a problem itself, but it is indicative of a bigger problem. Apparently, the nerve that controls pupil dilation begins in the brain then travels down into the chest and back up the neck into the eye. Horner’s syndrome can be a symptom of a lung tumor called Pancoast tumor. With my history of cancer, he wanted to inform my oncologist and get a scan of my lungs. Of course, I freaked out a little bit remembering those tiny nodules that showed up on my last scan. He also wanted me to see a neuro-ophthalmologist to determine where along the nerve pathway was the problem. In the meantime, I noticed a lump on the left side of my neck just above my collarbone. I assumed it was my thyroid and since I take Synthroid for low thyroid I was hoping the problem was just thyroid-related.
So yesterday, I went to see Dr. Spector, a neuro-opthalmologist at Northside. He did a test with eye drops and determined the problem was in my neck or chest, not in my eye. I showed him the lump in my neck and he wanted me to get an MRI and CT scan that afternoon. After multiple mishaps (change of location, MRI machine broke down, went home only to be called back in), I finally got the scans done. I had never had an MRI before and I was shocked when he said it would take 2 hours! So after going into the machine at 5:00, I got to go home at 7:30! I just kept hoping it would be all worth it when they realized it was just my thyroid.
This morning, John and I go back to Dr. Spector for the test results. It’s not my thyroid, it’s a lymph node. It’s highly likely that it’s the cancer metastasized. I have to have a biopsy done on the lump. I go tomorrow to meet with the surgeon and get it all set up.
From what I’ve been reading (I know I shouldn’t), the left lymph node is called Virchow’s node and it receives lymph flow from the abdomen and can be an early indication of ovarian cancer spread. Don’t ask me why it wouldn’t have shown up closer to the original site first! But all my scans have been clean, just my CA 125 has been suspicious . . . and now this!
I have had some narrow escapes in my life and I’m praying for one more! I know God can create loopholes when there seems to be no other way and He can make this lump benign even though all signs are pointing toward the worst. I've never liked to pray for specific outcomes, I have always trusted His will and just prayed for peace and acceptance. But this time, I’m asking for one thing – a loophole! I appreciate all the prayers you can give – thanks!
Since last fall my CA 125 (ovarian cancer test) has been going up – from 7 to 14 to 52 to 100 – under 30 is considered normal. I had a CT scan on March 30 and nothing serious showed up, just some tiny nodules in my lungs and an occlusion in my right subclavian vein. I had the vein thing checked out and it was fine. Then in April I noticed my left eye was acting weird – droopy eyelid and pupil much smaller than my right. I went to an ophthalmologist who diagnosed Horner’s syndrome. He said it’s not much of a problem itself, but it is indicative of a bigger problem. Apparently, the nerve that controls pupil dilation begins in the brain then travels down into the chest and back up the neck into the eye. Horner’s syndrome can be a symptom of a lung tumor called Pancoast tumor. With my history of cancer, he wanted to inform my oncologist and get a scan of my lungs. Of course, I freaked out a little bit remembering those tiny nodules that showed up on my last scan. He also wanted me to see a neuro-ophthalmologist to determine where along the nerve pathway was the problem. In the meantime, I noticed a lump on the left side of my neck just above my collarbone. I assumed it was my thyroid and since I take Synthroid for low thyroid I was hoping the problem was just thyroid-related.
So yesterday, I went to see Dr. Spector, a neuro-opthalmologist at Northside. He did a test with eye drops and determined the problem was in my neck or chest, not in my eye. I showed him the lump in my neck and he wanted me to get an MRI and CT scan that afternoon. After multiple mishaps (change of location, MRI machine broke down, went home only to be called back in), I finally got the scans done. I had never had an MRI before and I was shocked when he said it would take 2 hours! So after going into the machine at 5:00, I got to go home at 7:30! I just kept hoping it would be all worth it when they realized it was just my thyroid.
This morning, John and I go back to Dr. Spector for the test results. It’s not my thyroid, it’s a lymph node. It’s highly likely that it’s the cancer metastasized. I have to have a biopsy done on the lump. I go tomorrow to meet with the surgeon and get it all set up.
From what I’ve been reading (I know I shouldn’t), the left lymph node is called Virchow’s node and it receives lymph flow from the abdomen and can be an early indication of ovarian cancer spread. Don’t ask me why it wouldn’t have shown up closer to the original site first! But all my scans have been clean, just my CA 125 has been suspicious . . . and now this!
I have had some narrow escapes in my life and I’m praying for one more! I know God can create loopholes when there seems to be no other way and He can make this lump benign even though all signs are pointing toward the worst. I've never liked to pray for specific outcomes, I have always trusted His will and just prayed for peace and acceptance. But this time, I’m asking for one thing – a loophole! I appreciate all the prayers you can give – thanks!
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