So my girls -- or goils as we say back in Joisey -- have always been a matched set, identical twins, two peas in a pod. When I nursed my son, each one got equal time. They get equal display on the rare occasions that I flash a little decolletage. I've never done anything to make them think I would play favorites.
Now Dolly on the right side is striking out on her own and establishing a new identity as a bad girl, while her plain-Jane sister, the good twin, quietly continues to do her homework, help with household chores, etc. I feel kind of bad that I'm ignoring her while Dolly and her prima donna fits suck up all the attention.
Dolly is lovelier than ever, so round and rosy, but has become a really mean girl. If I don't yield to her demands that I hold stock-still, she has a way of punishing me.
I took her to see Dr. C this morning, who winced yet again when she saw the latest ballooning.
"Nasty, nasty, nasty," was all she could say. "The infection is spreading. The antibiotics haven't done anything yet."
She numbed me up, sliced open the incision and rummaged around in there to clean out a bunch of what she called "gunk."
I love it when she uses medical terms I understand.
I told her how I think Dolly looks very pretty.
She was shocked. "That's not pretty at all to a surgeon. It's very, very, very not pretty."
I wanted to shush her so we wouldn't hurt Dolly's feelings.
Dr. C dressed Dolly with acres of gauze and tape, and told me to return tomorrow morning. If my girl isn't any better, she wants to admit us to the hospital for IV antibiotics.
I really don't think I should be letting Dolly run my life like this.
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Thursday, September 9, 2010
Wednesday, September 8, 2010
Test results: Pathology report, Oncotype DX
I think I'm so smart, but it turns out my two intensive weeks at Google U haven't made me a doctor. Lots of test results to report, but uncertain about what it all means. For a girl like me, who loves to have everything crystal clear, this is frustrating.
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."
Friday, September 3, 2010
Lymph surgery and aftermath
I heard the woman's voice as if from a great distance. "Carolyn, your surgery is over and it went very well. I'm Mary, one of the nurses. Can you wake up for me?"
I couldn't remember how to open my eyelids, but I knew there was something important I needed to ask right away. "So my lymph nodes were clear?"
"Yes, everything was fine."
What a relief. I started to notice that the whole upper right side of my torso was throbbing. Whew, if it hurts this much from just the smaller sentinel node surgery, it's a good thing I didn't have to experience the pain from the full axillary surgery.
Another nurse materialized and I told her about the pain. She plunged a hypodermic into my IV; I could feel the dark cloud of clenched misery drift away as it took effect.
I wanted to double-check with her. "My lymph nodes were clear, right?"
"That's right," she said.
"Can my husband come in?"
"You're not quite ready but we'll get him soon."
A little later, she elevated the top part of my gurney so I could sit up, and Mark appeared.
I focused on his beautiful blue eyes as he sat down and asked how I felt.
"It was hurting a lot but they gave me something." I figured I'd triple-check. "So my lymph nodes were clear?"
His eyes got brighter. "They found cancer in the first node they looked at, honey."
"What! But the nurses said everything was fine." I could hear my voice rising higher and higher and my breath starting to come out in gasps. "You mean they went in and did the bigger surgery and took out a whole lot of the nodes?"
He nodded. By now I was sobbing. "That means it's metastasized."
His eyes were wet. "That's right, honey."
"I'll have to have chemotherapy."
"That's right, honey."
"Wait, are you sure? Did Dr. C say that? Did she tell you I have to have chemo?"
"Yes, she said there wasn't any choice now; you definitely will need chemo."
I couldn't believe this. Dr. C had been certain we wouldn't find anything in the lymph nodes and I was sure she was right. I'd even wondered if I should ask about skipping the surgery.
"Fuck," I choked out between sobs as Mark held my hand. "Fuck. Fuck. This isn't fair."
* * *
Earlier this hospital adventure had gone better than our previous outing (when the surgery got delayed for several hours).
In the nuclear medicine department, I was escorted to lie down on a narrow steel table; my 128-pound frame barely fit. "What if you have to get a 300-pound person on here?" I asked.
Eric, the friendly technician, used the kind of medical jargon I could understand. "Oh, the important parts fit on the table and the rest just kind of splooshes over the sides."
The scruffy but cute young nuclear med doctor warned me: "I have to tell you, a lot of patients find this procedure very uncomfortable. I'm going to inject the radioactive isotype in four places on your breast, at 12 o'clock, 3, 6 and 9. It's an acidic substance and many people feel a strong burning sensation. I get a lot of nasty letters afterwards saying 'You really hurt me.' Just tell me if it hurts and I can try to go more quickly or more slowly; whatever you need."
But actually it wasn't that bad. I did feel briefly as if I were being poked with hot needles, but it was over quickly.
Eric told me to spend 10 minutes gentling massaging my breast to spread the isotype. Too bad Mark was planted outside in the hallway; this would have been a perfect medical job for him to tackle.
Lying under a giant Geiger counter/camera, I watched a black-screened monitor slowly light up with the image of the nuclear substance, like seeing a Polaroid photo develop. There was a bright cluster of four dots where the doctor had injected the isotype, then two smaller concentrations that were my sentinel lymph nodes. There were smaller shimmering dots all over the breast. Eric gave me a lead shield to hold over the injection site so its brightness wouldn't overshadow the other areas; it was the size and shape of a CD, but weighed a couple of pounds.
Back in a curtained space in the pre-op area, me in a hospital gown on a gurney, Mark in an uncomfortable plastic chair, we settled in with our books and made bets on what time surgery would actually happen. Amazingly, the anesthesiologist showed up at 2:30, the scheduled time. This time I was awake as I was wheeled to the OR and for about half an hour in there while three nurses prepped the room and paged my surgeon. "You won't remember any of this," one of them told me -- but ha! proved her wrong.
When Dr. C arrived, I asked her about the Oncotype DX test. The night before, she'd told me that my score was 26 -- the high range of a grey area where it was uncertain whether chemotherapy would be beneficial or not. (Below 17 generally you don't need chemo; 18-30 is midrange, and above 31 you must have chemo.) She suggested coming to her office on Tuesday to discuss it in more detail.
That was all I remembered until waking up in the recovery room.
* * *
"Dr. C said you can stay here tonight or you can go home, whichever you want," Mark said. "I told her you'd probably want to go home."
"Oh yes, get me out of here, honey."
But I was so devastated by the news and so ensconced on my gurney and so groggy and intermittently being slammed by pain that I wasn't sure if I could get up. I fantasized that Mark could just wheel my gurney under the night skies to our house, as if I were royalty being carried in a sedan chair in a stately procession.
We could hear other patients waking up in the curtained areas all around us in the recovery room. The nurses were offering graham crackers and juice, which made me feel like we were preschoolers just rousing from naptime. One man, who must have been in his 60s, said querulously: "Don't you have any milk? I like milk with my cookies."
A nurse named Frank arrived to show us how to care for the drainage tube that ran from my underarm to a small plastic bulb. It would stay in place for 10 days, he said, and we'd need to empty and measure the accumulated fluid (mainly blood) several times a day. Mark, who hates blood, gamely did what needed to be done, and said he'd be able to manage it when we got home; I was still too groggy to grasp what was going on.
"Do you want to get dressed?" the nurse asked. I just couldn't fathom how I could lift my arms, let alone navigate all the complex tubing coming out of me.
"Can I just wear the hospital gown home?" I asked. He agreed -- score! It was the usual fetching, open-in-the-back number but I tried not to flash anyone as I navigated from the wheelchair to the car and from the car to our house.
At home, my pee came out bright blue, thanks to the blue dye they'd injected to help locate the sentinel nodes. I felt like a little kid who'd just learned to go potty for the first time. "Mark, come see! I have pretty pee!"
I couldn't remember how to open my eyelids, but I knew there was something important I needed to ask right away. "So my lymph nodes were clear?"
"Yes, everything was fine."
What a relief. I started to notice that the whole upper right side of my torso was throbbing. Whew, if it hurts this much from just the smaller sentinel node surgery, it's a good thing I didn't have to experience the pain from the full axillary surgery.
Another nurse materialized and I told her about the pain. She plunged a hypodermic into my IV; I could feel the dark cloud of clenched misery drift away as it took effect.
I wanted to double-check with her. "My lymph nodes were clear, right?"
"That's right," she said.
"Can my husband come in?"
"You're not quite ready but we'll get him soon."
A little later, she elevated the top part of my gurney so I could sit up, and Mark appeared.
I focused on his beautiful blue eyes as he sat down and asked how I felt.
"It was hurting a lot but they gave me something." I figured I'd triple-check. "So my lymph nodes were clear?"
His eyes got brighter. "They found cancer in the first node they looked at, honey."
"What! But the nurses said everything was fine." I could hear my voice rising higher and higher and my breath starting to come out in gasps. "You mean they went in and did the bigger surgery and took out a whole lot of the nodes?"
He nodded. By now I was sobbing. "That means it's metastasized."
His eyes were wet. "That's right, honey."
"I'll have to have chemotherapy."
"That's right, honey."
"Wait, are you sure? Did Dr. C say that? Did she tell you I have to have chemo?"
"Yes, she said there wasn't any choice now; you definitely will need chemo."
I couldn't believe this. Dr. C had been certain we wouldn't find anything in the lymph nodes and I was sure she was right. I'd even wondered if I should ask about skipping the surgery.
"Fuck," I choked out between sobs as Mark held my hand. "Fuck. Fuck. This isn't fair."
* * *
Earlier this hospital adventure had gone better than our previous outing (when the surgery got delayed for several hours).
In the nuclear medicine department, I was escorted to lie down on a narrow steel table; my 128-pound frame barely fit. "What if you have to get a 300-pound person on here?" I asked.
Eric, the friendly technician, used the kind of medical jargon I could understand. "Oh, the important parts fit on the table and the rest just kind of splooshes over the sides."
The scruffy but cute young nuclear med doctor warned me: "I have to tell you, a lot of patients find this procedure very uncomfortable. I'm going to inject the radioactive isotype in four places on your breast, at 12 o'clock, 3, 6 and 9. It's an acidic substance and many people feel a strong burning sensation. I get a lot of nasty letters afterwards saying 'You really hurt me.' Just tell me if it hurts and I can try to go more quickly or more slowly; whatever you need."
But actually it wasn't that bad. I did feel briefly as if I were being poked with hot needles, but it was over quickly.
Eric told me to spend 10 minutes gentling massaging my breast to spread the isotype. Too bad Mark was planted outside in the hallway; this would have been a perfect medical job for him to tackle.
Lying under a giant Geiger counter/camera, I watched a black-screened monitor slowly light up with the image of the nuclear substance, like seeing a Polaroid photo develop. There was a bright cluster of four dots where the doctor had injected the isotype, then two smaller concentrations that were my sentinel lymph nodes. There were smaller shimmering dots all over the breast. Eric gave me a lead shield to hold over the injection site so its brightness wouldn't overshadow the other areas; it was the size and shape of a CD, but weighed a couple of pounds.
Back in a curtained space in the pre-op area, me in a hospital gown on a gurney, Mark in an uncomfortable plastic chair, we settled in with our books and made bets on what time surgery would actually happen. Amazingly, the anesthesiologist showed up at 2:30, the scheduled time. This time I was awake as I was wheeled to the OR and for about half an hour in there while three nurses prepped the room and paged my surgeon. "You won't remember any of this," one of them told me -- but ha! proved her wrong.
When Dr. C arrived, I asked her about the Oncotype DX test. The night before, she'd told me that my score was 26 -- the high range of a grey area where it was uncertain whether chemotherapy would be beneficial or not. (Below 17 generally you don't need chemo; 18-30 is midrange, and above 31 you must have chemo.) She suggested coming to her office on Tuesday to discuss it in more detail.
That was all I remembered until waking up in the recovery room.
* * *
"Dr. C said you can stay here tonight or you can go home, whichever you want," Mark said. "I told her you'd probably want to go home."
"Oh yes, get me out of here, honey."
But I was so devastated by the news and so ensconced on my gurney and so groggy and intermittently being slammed by pain that I wasn't sure if I could get up. I fantasized that Mark could just wheel my gurney under the night skies to our house, as if I were royalty being carried in a sedan chair in a stately procession.
We could hear other patients waking up in the curtained areas all around us in the recovery room. The nurses were offering graham crackers and juice, which made me feel like we were preschoolers just rousing from naptime. One man, who must have been in his 60s, said querulously: "Don't you have any milk? I like milk with my cookies."
A nurse named Frank arrived to show us how to care for the drainage tube that ran from my underarm to a small plastic bulb. It would stay in place for 10 days, he said, and we'd need to empty and measure the accumulated fluid (mainly blood) several times a day. Mark, who hates blood, gamely did what needed to be done, and said he'd be able to manage it when we got home; I was still too groggy to grasp what was going on.
"Do you want to get dressed?" the nurse asked. I just couldn't fathom how I could lift my arms, let alone navigate all the complex tubing coming out of me.
"Can I just wear the hospital gown home?" I asked. He agreed -- score! It was the usual fetching, open-in-the-back number but I tried not to flash anyone as I navigated from the wheelchair to the car and from the car to our house.
At home, my pee came out bright blue, thanks to the blue dye they'd injected to help locate the sentinel nodes. I felt like a little kid who'd just learned to go potty for the first time. "Mark, come see! I have pretty pee!"
Tuesday, August 24, 2010
Another bosom buddy
It's like an underground sorority -- friends and friends of friends who've had breast cancer. The other night I had dinner with Marianne, whom I've known casually for years.
Slim and elegant, Marianne has a great sense of design that shines forth in everything from her chic purse to her precisely angled silver bob. She had breast cancer 13 years ago when she was in her early 50s -- my age (that itself suprises me, because I thought she was my age now). It had spread to her lymph nodes. That means it had metastasized - which is one of my fears; I'll find out my lymph node status after my next surgery on Sept. 2. Despite having the more-extensive lymph node surgery, she never had a problem with lymphodema (another one of my fears) and neither did any of the eight women in her cancer support group.
Along with a mastectomy, she had a hysterectomy and oophorectomy (removal of both her ovaries) because there was something suspicious on one of her ovaries.
"I just wanted them to take it all out because I didn't need it anymore," she explains. "I wanted to be done with it didn't want to be worried about it." After surgery she went through months of chemotherapy.
That all sounds grueling. Yet she says it wasn't an ordeal.
Chemo side effects weren't that horrible. She never got outrageously nauseous, just had that slightly "off" feeling you get in early pregnancy.
"Somehow I just sailed through it all. I lost my hair, which was upsetting, but then I got a really cute wig, mainly because I commute by BART and I didn't want to stand out. That wig was so flattering that I remember someone at work telling me I had never looked better. I just had to laugh."
She apologizes that she doesn't remember more specifics.
Actually, that vagueness is more reassuring than a detailed, harrowing war story. The message I get is that this wasn't cataclysmic; it was just a brief chapter and then her life flowed on, not forever cleaved into Before Cancer and After Cancer.
Did she decide to have reconstruction? Nope. "I'm not going to be posing for Playboy, but my husband likes me."
That's a great mantra; one I could take to heart.
Slim and elegant, Marianne has a great sense of design that shines forth in everything from her chic purse to her precisely angled silver bob. She had breast cancer 13 years ago when she was in her early 50s -- my age (that itself suprises me, because I thought she was my age now). It had spread to her lymph nodes. That means it had metastasized - which is one of my fears; I'll find out my lymph node status after my next surgery on Sept. 2. Despite having the more-extensive lymph node surgery, she never had a problem with lymphodema (another one of my fears) and neither did any of the eight women in her cancer support group.
Along with a mastectomy, she had a hysterectomy and oophorectomy (removal of both her ovaries) because there was something suspicious on one of her ovaries.
"I just wanted them to take it all out because I didn't need it anymore," she explains. "I wanted to be done with it didn't want to be worried about it." After surgery she went through months of chemotherapy.
That all sounds grueling. Yet she says it wasn't an ordeal.
Chemo side effects weren't that horrible. She never got outrageously nauseous, just had that slightly "off" feeling you get in early pregnancy.
"Somehow I just sailed through it all. I lost my hair, which was upsetting, but then I got a really cute wig, mainly because I commute by BART and I didn't want to stand out. That wig was so flattering that I remember someone at work telling me I had never looked better. I just had to laugh."
She apologizes that she doesn't remember more specifics.
Actually, that vagueness is more reassuring than a detailed, harrowing war story. The message I get is that this wasn't cataclysmic; it was just a brief chapter and then her life flowed on, not forever cleaved into Before Cancer and After Cancer.
Did she decide to have reconstruction? Nope. "I'm not going to be posing for Playboy, but my husband likes me."
That's a great mantra; one I could take to heart.
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