I came home yesterday afternoon and am firmly planted in my recliner with an occasional venture out and about. I was able to take a shower this morning and then Christine and I took a short walk down the street. It's a beautiful day and the temperature is just perfect.
I'm keeping on top of the pain with valium at night, meloxicam and extra-strength tylenol. At this point, I am not sure I hurt much more than I did from the seroma that caught us all off guard. It was painful and now it is gone. Actually, most of the feeling is gone and is likely to remain so. How much sensation returns is a good question.
The drains are a pain, as we knew they would be. I have to empty them and record the contents each time. Once the draining slows way down, they can be removed. That won't happen until a week from Thursday when I go to the plastic surgeon. We are keeping the drains corraled in some really comfy hoodies that have pockets on the inside. They are brightly colored and zip up the front. At $10 each, these things are an ultimate bargain.
Although the surgeon had to remove two levels of lymph nodes, she did not make a separate incision near my armpit. She was able to get to them without any additional damage, so I am glad that I don't have to deal with that pain (and another drain).
Christine and Rick are taking really good care of me. And I am thankful for the flowers, cards, phone calls and well-wishes from all of you.
Michelle
Wednesday, April 13, 2011
Monday, April 11, 2011
Surgery update
Christine here, Michelle's daughter. I just wanted to let you know that she is out of surgery and in recovery. We spoke to both her breast surgeon and her plastic surgeon, and they said she did great. The breast surgeon did have to take out all of her nodes, because they were too suspicious looking. She also had to take quite a bit of muscle to get around the tumor/seroma site. They were, unfortunately, unable to get at the intra-mammary node; it was too deep and would have required thoracic surgery. This isn't all bad, as watching that node will allow the oncologist to see if the chemotherapy is working, and make changes if necessary.
Thanks to all of you for your support, thoughts and prayers. I know they mean so much to her, and to our family!
Thanks to all of you for your support, thoughts and prayers. I know they mean so much to her, and to our family!
Saturday, April 9, 2011
PET Scan results
I got a call from the oncologist last night and spoke to my breast surgeon this morning. The news was not as good as we hoped, and not as bad as it might be. There is no bone or organ involvement, but there is likely lymph node involvement. Two nodes in the axillary area show cancer activity, and one in the intramammary area (if you touch the chest area between the breasts, you'd be pretty much right there). The axillary nodes will be removed and dissected, and I have requested the breast surgeon attempt to remove the intramammary node. I'm not comfortable leaving it there and waiting until chemo and/or radiation finally delivers the death blow. There is too much time to inflict more damage from what appears to be an especially aggressive cancer. She said she'll take it if she can find it easily. Removing all the intramammary nodes involves thoracic surgery and they just don't do that. Pretty sure I wouldn't want it, either.
Just trying to breathe ... 46 hours and counting until surgery. Really needing my "warrior attitude" to take over.
Michelle
Just trying to breathe ... 46 hours and counting until surgery. Really needing my "warrior attitude" to take over.
Michelle
Thursday, April 7, 2011
The lymphatic system and why I want to hang on to the nodes if possible; and medical establishment change management
Some of you may be wondering why I would endure a biopsy of my nodes just three days before my mastectomy. Here's an article that explains how the lymphatic system works:
Importance of Lymphatic System
The "cliff notes" version is that breast cancer tends to spread to the nodes before going elsewhere in the body. If those nodes are removed and they are all OK, it is now that much easier for rogue cancer cells to escape the "traps" set by the nodes. Lymphedema is another serious side effect, and is particularly prevalent in women who undergo mastectomies with axillary node dissection. It happens up to 10% of the time.
The latest research indicates that full axillary dissection does not increase survival rates in women with tumors smaller than 5 cm, even if they have sentinel nodes that test positive for cancer. Here's a nice summary of the findings:
http://www.medscape.com/viewarticle/737513
Note the last sentence of this article: "This study received considerable attention in the media and lay press, and I anticipate that patients will not only welcome the news, but also help drive change to avoid an additional surgical procedure which, for some, appears unnecessary."
I heard an interesting statistic yesterday from someone I know who is extremely knowledgeable about how the medical establishment manages "change" - it takes, on average, about 17 years for a change to work its way through and be wholeheartedly adopted by the medical community!
Here's an example of this that most of us have experienced. If you have ever had a surgical procedure, you always get the "nothing to eat or drink after midnight" instructions, right? No clarification, no exceptions, don't eat or drink. Well guess what, the latest data says that 6-8 hours is plenty for solid food, and 2-4 hours is sufficient for clear liquids. Anesthesiologists have been trying to get this message across for years; but telling everyone the same thing keeps it simple for staff, even if it's unnecessary. My surgery is scheduled for 1:00 in the afternoon. I don't plan on getting up at 5:00 to eat so that I can meet the 8 hour rule. But I will be up by 7:30 and I'm sure as he$$ having my morning cup of coffee, and any other clear liquids that will "float my boat" up until 9:00, with the complete approval of my anesthesiologist.
We all need to ask questions. We can actually help drive change.
Michelle
Importance of Lymphatic System
The "cliff notes" version is that breast cancer tends to spread to the nodes before going elsewhere in the body. If those nodes are removed and they are all OK, it is now that much easier for rogue cancer cells to escape the "traps" set by the nodes. Lymphedema is another serious side effect, and is particularly prevalent in women who undergo mastectomies with axillary node dissection. It happens up to 10% of the time.
The latest research indicates that full axillary dissection does not increase survival rates in women with tumors smaller than 5 cm, even if they have sentinel nodes that test positive for cancer. Here's a nice summary of the findings:
http://www.medscape.com/viewarticle/737513
Note the last sentence of this article: "This study received considerable attention in the media and lay press, and I anticipate that patients will not only welcome the news, but also help drive change to avoid an additional surgical procedure which, for some, appears unnecessary."
I heard an interesting statistic yesterday from someone I know who is extremely knowledgeable about how the medical establishment manages "change" - it takes, on average, about 17 years for a change to work its way through and be wholeheartedly adopted by the medical community!
Here's an example of this that most of us have experienced. If you have ever had a surgical procedure, you always get the "nothing to eat or drink after midnight" instructions, right? No clarification, no exceptions, don't eat or drink. Well guess what, the latest data says that 6-8 hours is plenty for solid food, and 2-4 hours is sufficient for clear liquids. Anesthesiologists have been trying to get this message across for years; but telling everyone the same thing keeps it simple for staff, even if it's unnecessary. My surgery is scheduled for 1:00 in the afternoon. I don't plan on getting up at 5:00 to eat so that I can meet the 8 hour rule. But I will be up by 7:30 and I'm sure as he$$ having my morning cup of coffee, and any other clear liquids that will "float my boat" up until 9:00, with the complete approval of my anesthesiologist.
We all need to ask questions. We can actually help drive change.
Michelle
Tests, tests and more tests
We are home after spending the day at the hospital. I had the PET scan at 9:00, which is a strange experience. Then we left the hospital and had breakfast, and stopped in Best Buy to kill a little time. We got back to the hospital and had all the pre-op testing, xray, blah blah blah. I've been poked and prodded, dyed and scanned. I should hear the results of the PET later today, with any luck. But...
the only way I can avoid full axillary dissection of my lymph nodes on Monday is to go tomorrow morning to the Breast Center and let them biopsy the questionable nodes. And since I really want to avoid removal of all these lymph nodes if it is at all possible, I'm showing up for the biopsy.
One day at a time...literally.
Michelle
the only way I can avoid full axillary dissection of my lymph nodes on Monday is to go tomorrow morning to the Breast Center and let them biopsy the questionable nodes. And since I really want to avoid removal of all these lymph nodes if it is at all possible, I'm showing up for the biopsy.
One day at a time...literally.
Michelle
Tuesday, April 5, 2011
Surgery scheduled...surprise!
Imagine my shock when I got a call from the pre-admission RN who told me I am scheduled for surgery Monday at 1:00! My doctor's office called while I was in the midst of the interview that is conducted in advance of surgery. My Thursday will be taken up by the PET scan at 8:00, then pre-op testing starting at 1:15. Chest x-ray, EKG, some blood work for sure, discussion with anesthesiologist, instructions to prevent MRSA, etc. etc. etc.
If everything goes as planned, I will spend just one night in the hospital Haven't done that since 10/6/80!
Sooner is better, less time to stress over all this.
If everything goes as planned, I will spend just one night in the hospital Haven't done that since 10/6/80!
Sooner is better, less time to stress over all this.
Monday, April 4, 2011
Rough Road Ahead
Today has been a whirlwind of doctor appointments and information dumping. I got a call from the breast surgeon this morning and the MRI showed the cancer that we knew was there, plus three inflamed nodes. It doesn't necessarily mean they are cancerous, but they are suspicious. Luckily, nothing seems to be outside the region of the left breast and the right breast was OK. I will have a PET scan on Thursday and that will help detect cancer anywhere in my body, including those suspicious lymph nodes.
I met with the plastic surgeon and...I don't have enough fat for the DIEP reconstruction I was hoping for. I should be thrilled that someone told me I don't have enough fat for anything but "A" cups and I've had lots of offers from potential fat donors ;>) It looks like my reconstruction will be done using tissue expanders. Here's a link that explains the process:
http://breastreconstruction.org/TypesOfReconstruction/ExpanderImplant.html
It makes the whole surgery thing much easier - that's the upside. One or two nights in the hospital and then about two weeks for recovery. You go back weekly or bi-weekly for fills until you get to about the size you want. The implants last about 15 years on average. I guess at that point I won't care.
After the PS appointment, I went to see the breast surgeon. She showed me the MRI and we talked about a surgery date. It will be either next Wednesday, 4/13, or the following Wednesday, 4/20. During the surgery, a port will be installed for administering chemo.
Then she walked me over to an oncologist who is also a radiation oncologist right there at the hospital. I was in her office for 2 1/2 hours. A nurse took my history (please let us have digital medical records soon; I'm so tired of explaining the deaths of my siblings and my dad), took my vitals, weighed me, etc. After a wait, the oncologist came in. She already had quite a bit of information and had read the existing pathology reports. She asked me a lot of questions and answered mine, she spent a lot of time talking about how we would control glucose levels (and really got into the whole diabetes thing). She tried to reassure me that everything I have done so far to take good care of myself would lead to a better outcome than a diabetic who has not been cautious. She knew about the metformin trials and felt that it could still be doing its job of fighting the cancer. She made a point of saying it might be worse if I hadn't been on it. So she recognized that it has benefit. She also noted that diabetics on metformin usually have a good pathological response to chemo.
This is the hard part...her chemo protocol is even more aggressive than the other onco's. She wants me to do 8 rounds of chemo (one every 3 weeks). She gave me options - 4 rounds before surgery, followed by surgery, followed by 4 more rounds; or do the surgery first, then do the chemo. She leans toward doing chemo first because, as she said, she's an onco and it tells her if it's working. But both protocols have the same end results and she understands if I want the cancer removed immediately. I said that surgery first would provide the pathology so we know what we're dealing with, and she agreed with that. There are tumor marker tests and PET scans to determine that the chemo is working. I really don't want this aggressive beast hanging out one minute longer than necessary.
After chemo, there will be radiation - probably 33 rounds. Once I am healed from the radiation, there will be an outpatient surgery to switch out the saline implants for silicone, and I'll probably have my port removed.
If all goes well, I will be finished with treatment by Christmas. Tough to swallow.
Time to arm the battle stations.
I met with the plastic surgeon and...I don't have enough fat for the DIEP reconstruction I was hoping for. I should be thrilled that someone told me I don't have enough fat for anything but "A" cups and I've had lots of offers from potential fat donors ;>) It looks like my reconstruction will be done using tissue expanders. Here's a link that explains the process:
http://breastreconstruction.org/TypesOfReconstruction/ExpanderImplant.html
It makes the whole surgery thing much easier - that's the upside. One or two nights in the hospital and then about two weeks for recovery. You go back weekly or bi-weekly for fills until you get to about the size you want. The implants last about 15 years on average. I guess at that point I won't care.
After the PS appointment, I went to see the breast surgeon. She showed me the MRI and we talked about a surgery date. It will be either next Wednesday, 4/13, or the following Wednesday, 4/20. During the surgery, a port will be installed for administering chemo.
Then she walked me over to an oncologist who is also a radiation oncologist right there at the hospital. I was in her office for 2 1/2 hours. A nurse took my history (please let us have digital medical records soon; I'm so tired of explaining the deaths of my siblings and my dad), took my vitals, weighed me, etc. After a wait, the oncologist came in. She already had quite a bit of information and had read the existing pathology reports. She asked me a lot of questions and answered mine, she spent a lot of time talking about how we would control glucose levels (and really got into the whole diabetes thing). She tried to reassure me that everything I have done so far to take good care of myself would lead to a better outcome than a diabetic who has not been cautious. She knew about the metformin trials and felt that it could still be doing its job of fighting the cancer. She made a point of saying it might be worse if I hadn't been on it. So she recognized that it has benefit. She also noted that diabetics on metformin usually have a good pathological response to chemo.
This is the hard part...her chemo protocol is even more aggressive than the other onco's. She wants me to do 8 rounds of chemo (one every 3 weeks). She gave me options - 4 rounds before surgery, followed by surgery, followed by 4 more rounds; or do the surgery first, then do the chemo. She leans toward doing chemo first because, as she said, she's an onco and it tells her if it's working. But both protocols have the same end results and she understands if I want the cancer removed immediately. I said that surgery first would provide the pathology so we know what we're dealing with, and she agreed with that. There are tumor marker tests and PET scans to determine that the chemo is working. I really don't want this aggressive beast hanging out one minute longer than necessary.
After chemo, there will be radiation - probably 33 rounds. Once I am healed from the radiation, there will be an outpatient surgery to switch out the saline implants for silicone, and I'll probably have my port removed.
If all goes well, I will be finished with treatment by Christmas. Tough to swallow.
Time to arm the battle stations.
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