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
Thursday, April 7, 2011
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.
Tuesday, March 29, 2011
Claiming victory was a bit premature
Earlier this year, I went to St. Louis with Rick on a business trip and spent the day shopping in St. Charles, a little historic town along the Mississippi with cute shops and restaurants. I came across a tshirt that said "I fought like a girl and won" and had to buy it, thinking it stated exactly how I felt about my "bout" with breast cancer. And I wore it proudly last week on my flight from KC to Boston to visit the kids.
Well, it appears that I may have won the first round, but I didn't quite deliver the knockout punch that I thought kicked cancer's butt. It's back.
That seroma I had was not infected, but it did contain cancer cells. That was confirmed by Cytology last week. Unfortunately, the lab didn't handle the specimen properly so no additional "pathology" tests could be performed. All I know is that cancer was present.
Today I met with the breast surgeon and asked her how I could possibly have a recurrence so soon in the same spot when we had zapped that site with 34Gy's of internal Mammosite radiation at the end of July. That is just not supposed to happen. All the clinical trials indicate that Mammosite is extremely effective. The only explanation she had is that rarely, cancer cells will adhere to the biopsy hematoma site. It is extremely rare and is why they proceed with biopsies when they are certain cancer is present. Otherwise, biopsies would be a bad idea. It's not supposed to happen.
I am now an "interesting case" and she will present "me" to the tumor board next week for discussion. How reassuring, right?
So, the plan is to have a bilateral mastectomy (BMX) with immediate reconstruction. The procedure is called DIEP - deep inferior epigastric perforator. The simple explanation is that the plastic surgeon takes fat from the abdomen and uses it to replace the breast tissue removed by the breast surgeon. It is done during one 6-hour surgery. Here's a link for more info:
http://www.diepbreastreconstruction.org/
So here's the current battle plan: on Thursday I have an oncologist appointment in the morning and an MRI late in the afternoon. The oncologist will order a PET scan, probably for Friday. On Monday I meet with a plastic surgeon. Assuming there are no surprises from the scan and MRI, I will have surgery within the month.
Recovery is not easy; the first day or two are spent in the ICU so that nurses can monitor the blood supply to the grafted tissue and I will have a pain pump, then I'll be moved to a room for two or three additional days. The first two weeks are rough, and full recovery takes about 8 weeks.
A bit of good news for my immediate family members - there was some thought that my father had breast cancer but we learned definitively that he did not; he died of lung cancer. Apparently he had a lump removed from his breast at some point, but it was benign. That decreases the risk that we have to worry about the BRCA gene, which indicates hereditary tendencies toward breast cancer.
Time to kick "survivor mode" into high gear.
Michelle
Well, it appears that I may have won the first round, but I didn't quite deliver the knockout punch that I thought kicked cancer's butt. It's back.
That seroma I had was not infected, but it did contain cancer cells. That was confirmed by Cytology last week. Unfortunately, the lab didn't handle the specimen properly so no additional "pathology" tests could be performed. All I know is that cancer was present.
Today I met with the breast surgeon and asked her how I could possibly have a recurrence so soon in the same spot when we had zapped that site with 34Gy's of internal Mammosite radiation at the end of July. That is just not supposed to happen. All the clinical trials indicate that Mammosite is extremely effective. The only explanation she had is that rarely, cancer cells will adhere to the biopsy hematoma site. It is extremely rare and is why they proceed with biopsies when they are certain cancer is present. Otherwise, biopsies would be a bad idea. It's not supposed to happen.
I am now an "interesting case" and she will present "me" to the tumor board next week for discussion. How reassuring, right?
So, the plan is to have a bilateral mastectomy (BMX) with immediate reconstruction. The procedure is called DIEP - deep inferior epigastric perforator. The simple explanation is that the plastic surgeon takes fat from the abdomen and uses it to replace the breast tissue removed by the breast surgeon. It is done during one 6-hour surgery. Here's a link for more info:
http://www.diepbreastreconstruction.org/
So here's the current battle plan: on Thursday I have an oncologist appointment in the morning and an MRI late in the afternoon. The oncologist will order a PET scan, probably for Friday. On Monday I meet with a plastic surgeon. Assuming there are no surprises from the scan and MRI, I will have surgery within the month.
Recovery is not easy; the first day or two are spent in the ICU so that nurses can monitor the blood supply to the grafted tissue and I will have a pain pump, then I'll be moved to a room for two or three additional days. The first two weeks are rough, and full recovery takes about 8 weeks.
A bit of good news for my immediate family members - there was some thought that my father had breast cancer but we learned definitively that he did not; he died of lung cancer. Apparently he had a lump removed from his breast at some point, but it was benign. That decreases the risk that we have to worry about the BRCA gene, which indicates hereditary tendencies toward breast cancer.
Time to kick "survivor mode" into high gear.
Michelle
Thursday, March 17, 2011
Infected seroma...yuck
In early February, I noticed an area just above the site of my biopsy was getting "inflamed." Over the past few weeks, it continued to get angry looking and increased in size. I did a little research and determined that it was likely a seroma (think about the fluid in a blister - that's what was developing). Most seromas resolve themselves after a while and rarely have to be aspirated, so I didn't rush off to the breast surgeon. Plus, I already had an appointment for today so I felt that I could "wait and see" what happened. I also knew I had an ultrasound scheduled for Monday, so this thing was going to get plenty of attention. The technologist confirmed on Monday that it was a seroma and the radiologist recommended it be drained. They knew I had an appointment with the breast surgeon so I was dismissed with the recommendation but no immediate action.
Now for my little adventure...my breast surgeon took a look at it this morning and determined that it was infected and I am now on Levaquin (pricey stuff!) for the next ten days. They sent me immediately back to Radiology and the radiologist withdrew two large syringes of fluid and tissue. One will be sent for culture to be sure we've got the right antibiotic at work, and the other will be sent to Cytology to look for abnormal cells. She really wanted to do a full biopsy but we agreed it was too risky because I take a daily aspirin and meloxicam. I really didn't want a repeat of the bleeding that I had from the first biopsy. She thought she could get enough tissue with the needle so I was glad that we settled on going just that far.
After the procedure, they put pressure on the site for several minutes, then took me to another room, applied antibiotic cream and a steri-strip, then wrapped my entire breast area with a tight ace bandage. And they inserted an ice pack. I have to wear the ace bandage until tomorrow. My breast surgeon advises wearing a tight sports bra for a while, to try and help close the pocket that seems to want to fill with fluid. She did say it will probably fill up again...oh yay.
I left the hospital feeling pretty good; but I didn't get very far before I started to feel the stinging as if she was still poking around with a needle. By the way, it was a big needle...the size used for blood donation. I headed to my mom's and stopped at the store for a fresh supply of extra-strength acetaminophen. I took a couple when I got to mom's and made the immediate decision that I wasn't going anywhere else except home. I stayed and had lunch with her, marched her in to get a haircut at the onsite salon, then left for the pharmacy. I picked up my prescription and now I am home, in my recliner, with a fresh ice pack.
It will all be fine, but I could certainly do without the complication. It's not the seroma from the Mammosite that's causing the trouble; it's the initial biopsy that keeps on giving.
I have to go back to the breast surgeon on March 31st and we'll see how things are going. Any other decisions are on hold until this is resolved.
Michelle
Now for my little adventure...my breast surgeon took a look at it this morning and determined that it was infected and I am now on Levaquin (pricey stuff!) for the next ten days. They sent me immediately back to Radiology and the radiologist withdrew two large syringes of fluid and tissue. One will be sent for culture to be sure we've got the right antibiotic at work, and the other will be sent to Cytology to look for abnormal cells. She really wanted to do a full biopsy but we agreed it was too risky because I take a daily aspirin and meloxicam. I really didn't want a repeat of the bleeding that I had from the first biopsy. She thought she could get enough tissue with the needle so I was glad that we settled on going just that far.
After the procedure, they put pressure on the site for several minutes, then took me to another room, applied antibiotic cream and a steri-strip, then wrapped my entire breast area with a tight ace bandage. And they inserted an ice pack. I have to wear the ace bandage until tomorrow. My breast surgeon advises wearing a tight sports bra for a while, to try and help close the pocket that seems to want to fill with fluid. She did say it will probably fill up again...oh yay.
I left the hospital feeling pretty good; but I didn't get very far before I started to feel the stinging as if she was still poking around with a needle. By the way, it was a big needle...the size used for blood donation. I headed to my mom's and stopped at the store for a fresh supply of extra-strength acetaminophen. I took a couple when I got to mom's and made the immediate decision that I wasn't going anywhere else except home. I stayed and had lunch with her, marched her in to get a haircut at the onsite salon, then left for the pharmacy. I picked up my prescription and now I am home, in my recliner, with a fresh ice pack.
It will all be fine, but I could certainly do without the complication. It's not the seroma from the Mammosite that's causing the trouble; it's the initial biopsy that keeps on giving.
I have to go back to the breast surgeon on March 31st and we'll see how things are going. Any other decisions are on hold until this is resolved.
Michelle
Friday, February 18, 2011
Latest research and interesting stuff
Every day I receive an email from the "Science Blog" that contains links to interesting research studies. The studies are about all kinds of topics, including cancer, diabetes, etc. I am going to start posting links and comments about some of these studies as I think there is some interesting stuff going on. I also think some of it is less than scientific; so as time moves forward, we'll see what pans out and what doesn't.
Today's blog has a link to an article entitled "Further research needed to develop evidence-based nutrition guidelines for cancer survivors". It states an interesting statistic...4% of Americans are cancer survivors. That seems like a staggering number; the US population is just over 307 million. So 12 million of us have fought cancer...wow! The article goes on to state that cancer patients die of non-cancer related deaths at a rate much higher than the general population. The hypothesis is that good nutrition would prevent some of these deaths.
http://scienceblog.com/42883/further-research-needed-to-develop-evidence-based-nutrition-guidelines-for-cancer-survivors/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+scienceblogrssfeed+%28Science+Blog%29
Well, how about this idea...
In the article it lists cardiovascular disease, diabetes, osteopenia and osteoporosis, functional impairment, and other endocrine disorders as leading causes of death. Go figure...
Finding cancer treatments that target cancer cells while leaving the rest of the body "intact" seems like a better place to spend your research dollars.
Michelle
Today's blog has a link to an article entitled "Further research needed to develop evidence-based nutrition guidelines for cancer survivors". It states an interesting statistic...4% of Americans are cancer survivors. That seems like a staggering number; the US population is just over 307 million. So 12 million of us have fought cancer...wow! The article goes on to state that cancer patients die of non-cancer related deaths at a rate much higher than the general population. The hypothesis is that good nutrition would prevent some of these deaths.
http://scienceblog.com/42883/further-research-needed-to-develop-evidence-based-nutrition-guidelines-for-cancer-survivors/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+scienceblogrssfeed+%28Science+Blog%29
Well, how about this idea...
In the article it lists cardiovascular disease, diabetes, osteopenia and osteoporosis, functional impairment, and other endocrine disorders as leading causes of death. Go figure...
- Chemo agents such as adriamycin and herceptin are known to cause heart damage in some patients;
- In order to minimize side effects, chemo patients are pumped full of steroids, leading to soaring glucose levels and weight gain thus triggering diabetes in some patients;
- Anti-hormone therapy administered to breast cancer patients is known to cause osteopenia and osteoporosis in up to 22% of patients, it also raises cholesterol and blood pressure, and can cause weight gain;
- The taxol chemo agents cause neuropathy in up to 74% of patients and it doesn't always go away after chemo treatment has ended;
- Chemo brain is real.
- Chemo agents can ruin a person's immune system and lead to leukemia years later.
Finding cancer treatments that target cancer cells while leaving the rest of the body "intact" seems like a better place to spend your research dollars.
Michelle
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