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Tom · 08-10-2006, 04:21 PM

Hi Lani. Sorry I didn't see this and respond sooner. I swear my eyesite is going south on me.

The story with Mom was this: Her surgeon decided to move ahead with her lumpectomy without doing a biopsy first. I was OK with that, and I wanted the thing gone as soon as possible. We had discussed the "likely" nature of the tumor, and I was ASSURED it would be an estrogen+ tumor, and that Mom would have it removed and need only to take Tamoxifen afterwards. I was even strongly discouraged from having her go through rads, as it would be "inconvenient" on both of us, and unnecessary. It was suggested that if she had a local recurrence, we would simply have more surgery. I planned on rads against the surgeon's recommendations, as I knew that rads would drop her local recurrence chances down form 40% to 10%.

During the surgery, the first margin was found to be dirty, and the syrgeon went back for another pass against the chest wall. After the surgery, I asked about the results of the SNB, and was told that none was done, but that the one enlarged node was taken instead, in order to avoid unnecessary comorbidities of more extensive resection. I was very upset about that, but was again reassured that the case was simple and that I should not worry.

Then of course, came the pathology report "stick in the eye" some days later, revealing the HER2+, ER-, PR- status of the malignancy. I was phyiscally ill when I got the news. Still, I was sent off to the oncologist with a report that stated Mom's status as "clear margins and NEGATIVE nodes". How the hell could you say someone had NEGATIVE nodes when you only looked at one, and it wasn't even identified as the sentinel node?

Eight months later, I discovered enlarged nodes in Mom's axilla, and insisted on a biopsy of them, Of course, they were found to have cancer in the ones sampled. I again insisted that an axillary dissection be performed, against the advice of the same surgeon. A level II axillary dissection was done, resulting in a 12/20 positive node finding. I was furious. All involved agreed that the micrometasteses were there ALL ALONG, but were missed from the get go. Back for more rads we went, as the earlier rads had not covered all of the involved nodes. Then I had to beg for early Herceptin.

The bottom line of this tale (not to beat a dead horse) was that had Mom had the appropriate staging, SNB, the micromets would have been found, and the appropriate rads could have been delivered, quite possibly knocking down the cancer at it's early stage of spread. The surgeon apologized to me, stating that "maybe we ( I guess she had a mouse in her pocket) hadn't done the best thing eight months earlier". THEN, she says that she believed the outcome would have been the same even if we HAD done the SNB. That was the most blatent CYA I have ever been privy to in my life.

Anyway, here we are much later, after two surgeries, two rounds of rads, and a year of Herceptin, waiting to see what shoe drops next, as Mom's Herceptin was stopped a month ago due to declining LVEF. We go next week to see what to do next. This all proved that good planning, and proper staging can save lives and reduce morbidity related to surgery and other forms of treatment.

Tom

08-10-2006, 04:21 PM	#2
Tom Senior Member Join Date: Sep 2005 Posts: 290	Thanks Lani Hi Lani. Sorry I didn't see this and respond sooner. I swear my eyesite is going south on me. The story with Mom was this: Her surgeon decided to move ahead with her lumpectomy without doing a biopsy first. I was OK with that, and I wanted the thing gone as soon as possible. We had discussed the "likely" nature of the tumor, and I was ASSURED it would be an estrogen+ tumor, and that Mom would have it removed and need only to take Tamoxifen afterwards. I was even strongly discouraged from having her go through rads, as it would be "inconvenient" on both of us, and unnecessary. It was suggested that if she had a local recurrence, we would simply have more surgery. I planned on rads against the surgeon's recommendations, as I knew that rads would drop her local recurrence chances down form 40% to 10%. During the surgery, the first margin was found to be dirty, and the syrgeon went back for another pass against the chest wall. After the surgery, I asked about the results of the SNB, and was told that none was done, but that the one enlarged node was taken instead, in order to avoid unnecessary comorbidities of more extensive resection. I was very upset about that, but was again reassured that the case was simple and that I should not worry. Then of course, came the pathology report "stick in the eye" some days later, revealing the HER2+, ER-, PR- status of the malignancy. I was phyiscally ill when I got the news. Still, I was sent off to the oncologist with a report that stated Mom's status as "clear margins and NEGATIVE nodes". How the hell could you say someone had NEGATIVE nodes when you only looked at one, and it wasn't even identified as the sentinel node? Eight months later, I discovered enlarged nodes in Mom's axilla, and insisted on a biopsy of them, Of course, they were found to have cancer in the ones sampled. I again insisted that an axillary dissection be performed, against the advice of the same surgeon. A level II axillary dissection was done, resulting in a 12/20 positive node finding. I was furious. All involved agreed that the micrometasteses were there ALL ALONG, but were missed from the get go. Back for more rads we went, as the earlier rads had not covered all of the involved nodes. Then I had to beg for early Herceptin. The bottom line of this tale (not to beat a dead horse) was that had Mom had the appropriate staging, SNB, the micromets would have been found, and the appropriate rads could have been delivered, quite possibly knocking down the cancer at it's early stage of spread. The surgeon apologized to me, stating that "maybe we ( I guess she had a mouse in her pocket) hadn't done the best thing eight months earlier". THEN, she says that she believed the outcome would have been the same even if we HAD done the SNB. That was the most blatent CYA I have ever been privy to in my life. Anyway, here we are much later, after two surgeries, two rounds of rads, and a year of Herceptin, waiting to see what shoe drops next, as Mom's Herceptin was stopped a month ago due to declining LVEF. We go next week to see what to do next. This all proved that good planning, and proper staging can save lives and reduce morbidity related to surgery and other forms of treatment. Tom