(post script: the all-caps was not me being dramatic. the report actually came typed in this font.)
(p.s.s.: onc turned the phrase, "we are back at ground zero" me: "you mean like deja vu all over again?" onc, "YES, exactly")
Showing posts with label biopsy. Show all posts
Showing posts with label biopsy. Show all posts
Saturday, July 23, 2011
Running Out of Wiggle Room?
******
METASTATIC INVASIVE LOBULAR CARCINOMA TO LYMPH NODE...lab report of July 21, 2011, courtesy of Pinnacle Pathology.
(post script: the all-caps was not me being dramatic. the report actually came typed in this font.)
(p.s.s.: onc turned the phrase, "we are back at ground zero" me: "you mean like deja vu all over again?" onc, "YES, exactly")
(post script: the all-caps was not me being dramatic. the report actually came typed in this font.)
(p.s.s.: onc turned the phrase, "we are back at ground zero" me: "you mean like deja vu all over again?" onc, "YES, exactly")
Friday, July 8, 2011
Two Years Notched
******
Two years ago today I was lying on a gurney at an outpatient surgi-center. The biopsy on my left breast was being completed. The doctor was recording his findings and observations orally while he performed the procedure.
![]()
Dense; yellowish; stringy in consistency ... [gross!]
He looks down at my face and tells me he is not optimistic about what he is seeing. He says that more tests will be done, the substance drawn will be scrutinized more closely. He shares, at my prompting, that he is fairly sure that it is cancerous.
While the nurse cleans up and bandages the biopsy site she shares, without my prompting, that in the 8 years she has been working with this particular doctor, she has never known him to be wrong.
He wasn't.
The first year P.D. [Post-Diagnosis] was a roller coaster ride. Thinking back on it all feels unreal. Other times the memories of it are surreal. At all times I feel like I have chronic jet lag.
The second year P.D. was, thankfully, mostly mundane with a few annoyances.
Going into the third year P.D., I am being overwhelmed with an urgency to "clean house"; "finish the unfinished"; "tidy up" the messes made by a family of five over the last two decades. The last time I had these strong nesting urges I was pregnant.
I am not.
And these urges are more visceral.
After the insanity of this past May. The nearly month-long healing afterwards. And the PTSD-like reactions that I am still compartmentalizing, I was finally up to having my overdue PetScan. The order for the PetScan was for "restaging of breast cancer." The results: two notable areas were identified; and one area of concern prompt further diagnostics. It appears that left lymph nodes just beyond the site of the sentinel node biopsy of two years ago, that were "notable" at the last PetScan in November, have now progressed to being of concern.
What further diagnostic steps would provide the most accurate information were debated for two days between my oncologist and the radiologist who conducted the PetScan. A blah-blah-blah guided biopsy. It took onc's patient liaison three days to find a facility that could perform this blah-blah-blah guided biopsy. Ugh...sigh...only a hospital has the capability.
After the debacle in May -- the experience of which I am finding myself unable to put into written word, I had vowed never to consciously allow myself to return to a hospital. In typical passive-aggressive fashion, I have insisted that I cannot schedule this blah-blah-blah guided biopsy until a month out.
I need to give myself time to think. What would be the purpose of another procedure? Knowledge. What would I do with the knowledge? How would I make the knowledge serve me?
Th hospital tried to schedule me for today, July 8. The irony of consciously manipulating deja vu was too much to handle. I have two years notched. Deja vu can wait.
Any idiot can face a crisis - it's day to day living that wears you out ~Anton Chekhov
Dense; yellowish; stringy in consistency ... [gross!]
He looks down at my face and tells me he is not optimistic about what he is seeing. He says that more tests will be done, the substance drawn will be scrutinized more closely. He shares, at my prompting, that he is fairly sure that it is cancerous.
While the nurse cleans up and bandages the biopsy site she shares, without my prompting, that in the 8 years she has been working with this particular doctor, she has never known him to be wrong.
He wasn't.
The first year P.D. [Post-Diagnosis] was a roller coaster ride. Thinking back on it all feels unreal. Other times the memories of it are surreal. At all times I feel like I have chronic jet lag.
The second year P.D. was, thankfully, mostly mundane with a few annoyances.
Going into the third year P.D., I am being overwhelmed with an urgency to "clean house"; "finish the unfinished"; "tidy up" the messes made by a family of five over the last two decades. The last time I had these strong nesting urges I was pregnant.
I am not.
And these urges are more visceral.
After the insanity of this past May. The nearly month-long healing afterwards. And the PTSD-like reactions that I am still compartmentalizing, I was finally up to having my overdue PetScan. The order for the PetScan was for "restaging of breast cancer." The results: two notable areas were identified; and one area of concern prompt further diagnostics. It appears that left lymph nodes just beyond the site of the sentinel node biopsy of two years ago, that were "notable" at the last PetScan in November, have now progressed to being of concern.
What further diagnostic steps would provide the most accurate information were debated for two days between my oncologist and the radiologist who conducted the PetScan. A blah-blah-blah guided biopsy. It took onc's patient liaison three days to find a facility that could perform this blah-blah-blah guided biopsy. Ugh...sigh...only a hospital has the capability.
After the debacle in May -- the experience of which I am finding myself unable to put into written word, I had vowed never to consciously allow myself to return to a hospital. In typical passive-aggressive fashion, I have insisted that I cannot schedule this blah-blah-blah guided biopsy until a month out.
I need to give myself time to think. What would be the purpose of another procedure? Knowledge. What would I do with the knowledge? How would I make the knowledge serve me?
Th hospital tried to schedule me for today, July 8. The irony of consciously manipulating deja vu was too much to handle. I have two years notched. Deja vu can wait.
Any idiot can face a crisis - it's day to day living that wears you out ~Anton Chekhov
Tuesday, March 1, 2011
Early Detection...Maybe
******
The following reprinted story struck a chord.
I first noticed a small lump in my left breast in 1993. I was 32 years old. It was so persistent that I gave the lump a name . . . "Irving." We were in the midst of relocating from Washington D.C. to Arizona at the time, and I put "Irving" on the back-burner; to be dealt with after we settled into our new environ.
Early in 1994 I scheduled an exam. I was told that it was most likely a benign cyst, or the result of fibrous breast tissue. No one was concerned as I had no history or lifestyle predilections toward cancer. I was concerned nonetheless and asked how we could ascertain that it was indeed benign. I needed to put any lingering concerns behind me so that I could re-shift my focus on preparing for the Arizona Bar and caring for my two young daughters. The physician said he would be happy to do a needle aspiration in office. It was awful, it was painful (the prep part numbing the area) and it was botched. He said that the lump disappeared when he inserted the needle, so it must have just been a cyst. He put a bandaid on the site and sent me on my way.
I thought it odd, but the doctor was not concerned, so I did not see why I should be. After all, no history no factors. I had an exam to prepare for, as well as an 18 month old and 3 year old at home.
It took about 3 days before the site was not hyper-sensitive to touch. Five days later, I found that "Irving" was not MIA, but right at home where he had always been.
Starting at age 35 I started having mammograms -- about every other year. I had thought this was a good idea since "Irving" continued to keep house within me. Each time the mammogram showed what appears to be fibrous breast tissue. No one found this remarkable and I went on with my life.
Fast forward to age 47. January 2009, "Irving" starts to become painful. I am told that cancer tumors do not cause pain so that it is most likely just hormonal (spot on it was, as we later discover...certain breast cancers are hormonally driven). April, 2009, "Irving" is not only painful...all the time...but he is becoming physically noticeable in my breast. I call my GYN (not the same one as in 1994) to make an appointment. Dr. Alperin's first available is July.
I explain my concerns. The scheduling nurse pulls my file, reviews the past mammogram results: fibrous breast tissue, nothing remarkable. She notes that I am due for another mammogram. I ask if I can get that done first, so I can have the results when I see Alperin. No, the doctor or PA has to write those up. I ask if I can get into Alperin sooner than July, given my concerns. Since this is not an emergency, he is really booked up at this time for annual exams...I can have the date in early July and I can be put on a waiting list for cancellations.
July 6, 2009, five minutes in the exam room, after I explain my concern regarding the changing "Irving", Dr. Alperin is in warp-drive urgent mode. This mass has to be reviewed immediately, tomorrow...this week at the latest. There can be no delay. I am scheduling you for a diagnostic mammogram and ultrasound. He writes STAT on the orders.
The rest, well...as I discovered, is now truly history. "Irving" turned out not to be fibrous breast tissue after all, but a 6.2 cm indolent cancerous tumor that the pathologist and medical onc believe had been "growing" for at least ten years if not longer...say since 1993?
Early detection? I was not one of the 1900 women that it purportedly benefited. Indeed, going through the processes of early detection appeared to lull everyone, myself included, into believing I had nothing to worry about. At least not until I presented with something that could not be ignored. BTW - I found out later, which has been confirmed times over, my form of breast cancer (invasive lobular) is not detectable through the conventional "early detection" methods. Why? Because it is usually misdiagnosed as fibrous breast tissue.
I first noticed a small lump in my left breast in 1993. I was 32 years old. It was so persistent that I gave the lump a name . . . "Irving." We were in the midst of relocating from Washington D.C. to Arizona at the time, and I put "Irving" on the back-burner; to be dealt with after we settled into our new environ.
Early in 1994 I scheduled an exam. I was told that it was most likely a benign cyst, or the result of fibrous breast tissue. No one was concerned as I had no history or lifestyle predilections toward cancer. I was concerned nonetheless and asked how we could ascertain that it was indeed benign. I needed to put any lingering concerns behind me so that I could re-shift my focus on preparing for the Arizona Bar and caring for my two young daughters. The physician said he would be happy to do a needle aspiration in office. It was awful, it was painful (the prep part numbing the area) and it was botched. He said that the lump disappeared when he inserted the needle, so it must have just been a cyst. He put a bandaid on the site and sent me on my way.
It took about 3 days before the site was not hyper-sensitive to touch. Five days later, I found that "Irving" was not MIA, but right at home where he had always been.
Starting at age 35 I started having mammograms -- about every other year. I had thought this was a good idea since "Irving" continued to keep house within me. Each time the mammogram showed what appears to be fibrous breast tissue. No one found this remarkable and I went on with my life.
Fast forward to age 47. January 2009, "Irving" starts to become painful. I am told that cancer tumors do not cause pain so that it is most likely just hormonal (spot on it was, as we later discover...certain breast cancers are hormonally driven). April, 2009, "Irving" is not only painful...all the time...but he is becoming physically noticeable in my breast. I call my GYN (not the same one as in 1994) to make an appointment. Dr. Alperin's first available is July.
I explain my concerns. The scheduling nurse pulls my file, reviews the past mammogram results: fibrous breast tissue, nothing remarkable. She notes that I am due for another mammogram. I ask if I can get that done first, so I can have the results when I see Alperin. No, the doctor or PA has to write those up. I ask if I can get into Alperin sooner than July, given my concerns. Since this is not an emergency, he is really booked up at this time for annual exams...I can have the date in early July and I can be put on a waiting list for cancellations.
July 6, 2009, five minutes in the exam room, after I explain my concern regarding the changing "Irving", Dr. Alperin is in warp-drive urgent mode. This mass has to be reviewed immediately, tomorrow...this week at the latest. There can be no delay. I am scheduling you for a diagnostic mammogram and ultrasound. He writes STAT on the orders.
Early detection? I was not one of the 1900 women that it purportedly benefited. Indeed, going through the processes of early detection appeared to lull everyone, myself included, into believing I had nothing to worry about. At least not until I presented with something that could not be ignored. BTW - I found out later, which has been confirmed times over, my form of breast cancer (invasive lobular) is not detectable through the conventional "early detection" methods. Why? Because it is usually misdiagnosed as fibrous breast tissue.
The Accidental Breast Cancer Patient
After a revolving door of mammograms, cancer medication and lumpectomies, one woman wonders if early screening is the best method of preventing breast cancer.
My 40s have been haunted by mammograms. This may sound ungrateful, considering I'm a breast cancer survivor whose cancer wouldn't have been discovered without them. But my breast history is as complicated and inconclusive as the debate over the new screening recommendations. So I'll just say it: I'm not sure if early screening was a good thing for me.
I entered my 40s an ox: strong, invincible. I practiced yoga, kayaked, rarely got sick. So when I went in for my annual mammogram, at 41, I was shocked to be told that my films looked "suspicious." I had no risk factors. No cancer of any type in my family. I had my first baby at 28. But none of that mattered.
Next thing I knew, I was strapped to a surgical bed for a biopsy. The verdict: benign. I had something called atypical hyperplasia, an accumulation of abnormal cells that could be precancerous-or not.
After two weeks on the couch, my chest wrapped in gauze, I was left with a small scar, a bruised psyche, and chronic fear. I was now on the close-watch plan, which required mammograms every six months, as well as callbacks for additional examinations. This increased scrutiny was considered a good thing, and I tried to see it that way, but honestly, I dreaded the appointments, those extra films, the anxious waiting.
At 43, that scrutiny found "suspicious" calcifications. Again, no lump-just a tiny cluster of white, seen only by mammogram. This time I had a core biopsy, which entailed being smashed facedown on a surgical bed, my right breast squished into a hole while a long needle went fishing for cells.
Again, benign.
But I continued on close watch. More paper gowns. More films. More fear.
At 45, the mammogram again showed tiny calcifications. And again, I found myself strapped to a surgical bed-this time for a lumpectomy.
The pathology came back: ductal carcinoma in situ (DCIS), cancerous cells in the milk duct. I was spared radiation and chemotherapy and was prescribed tamoxifen-an antiestrogen with a long list of side effects, including insomnia, hot flashes, and possible increased risk of uterine cancer and heart disease. A recent study also suggested that it may increase risks for hormone-negative cancers, a more aggressive form compared to the hormone-positive cancer that I was thought to have. To complicate matters, a Mayo Clinic pathologist I later consulted believed that my DCIS was actually another case of atypical hyperplasia.
Benign.
So did I need all those tests? All that treatment?
I wish I had a definitive answer. The confusion brings up an uncomfortable truth about medicine: Recommendations are based on population studies, not individual cases. My heart goes out to every woman saved by early diagnosis, but, as breast expert Dr. Susan Love has said, screening before 50 is tricky: Younger women have dense breast tissue; it looks white on a mammogram, and so does cancer-it's like "looking for a polar bear in the snow." Tumors are missed, and non-tumors are biopsied. Worse, Love says, "The risk of radiation is higher in younger women and cumulative. Additional cancers caused by the radiation have to be weighed against the ones found."
For every one in 1,900 women who is saved by early detection, how many women are harmed? Will I be harmed? This we do not know.
What showed up in my mammograms may have been an overreaction to my body's changing hormone levels. It's possible that if I had waited for my first mammogram at 50, they would have resolved on their own. Autopsies on women in their 80s and 90s have found DCIS that likely existed for decades and never spread.
Did the cells excavated from my core biopsy at 43-and all those mammograms-actually cause the DCIS? Or would those "suspicious" white spots, left undetected and untreated, have eventually grown into an invasive cancer-and killed me? I don't know. Doctors don't know.
What I do know is that it's up to me to treat my body with the utmost love and respect. So I feed it organic foods and sweat every day-do hot yoga, have sex, run marathons. Anything to make my heart race and skin flush. Anything to make me forget the breast cancer diagnosis and all those mammograms.
Gail Konop Baker is the author of Cancer Is a B****.
Originally published on February 19, 2010
Sunday, September 13, 2009
Just Practicing - An Update
******
I have heard from 6 lovely friends over the last three days. The commentary is all the same. I have read your blog and know what is happening, but HOW ARE YOU FEELING?
I found this an interesting question. Interesting, because this blog is my emotional outlet. The narrative of HOW I AM FEELING. So, I re-read my entries, and tried to be objective. From the entries it would seem to me that my feelings are indeed all encapsulated on this blog. They can be summed up, and in no significant ranking, as:
Frustrated
Cynical
Sardonic (is that a feeling?)
Appreciative
Challenging (more of an action-word, I know. but anyone who knows me knows that I am constantly in-motion)
Surreal (a sensation yes, but an emotion? probably not, but I include it because it really does captures the daily state of my mental being)
So, looking at the above list, it appears fairly comprehensive -- to me -- of where my head and emotions have been these last few weeks. With that in mind, to answer the question, how am I feeling?
WEELLLLLLLLLL..........
I hit my 3 week mark since the mastectomy and I am frustrated at my lack of stamina and the screaming of my nerve endings in the surgical site! Reminder: a mastectomy is the lobing off of an appendage, albeit a small and inconsequential one. Nonetheless, there is "shadow" pain associated with a missing appendage - no matter the nature of the protrusion.
I asked the reconstructive surgeon if it was "normal" to feel like my body is trying to purge the expander, a la Sigourney Weaver and ALIENS. YES! He answered quite enthusiastically. Apparently I just came up with another way of describing that my body is vociferously objecting the presence of a prosthetic.
What is surreal, is that I am a card-carrying prosthetic recipient. A synthetic "expander" now occupies the space under my chest-muscle wall, directly underneath where my breast innards used to be. Got the card in my wallet, complete with a picture and model #. I'm supposed to carry it there as a "just in case." Like, just in case I'm in an accident and the bugger pops! So with the card and the clean thong I keep in my handbag I'm giving a whole new meaning to the Girl Scouts motto: "Be prepared!".
I am frustrated in that speaking to the med pros, here in-state and out-of-state, I cannot pin down a personalized prognosis. (This is the second most asked question I get.) All I get is the insistence that in order to statistically have a chance at the "standard" 10 year survival rate for ILC I must succumb to the standard adjuvant treatments.
The emotional and mental challenge of this lack of individualistic answer is that my PetScan came back with NOTHING, NADA, RIEN, NICHTS remarkable. Indeed, my margins after the removal of the entire left-lady were clean. Annnnnddddd, of the 3 lymph nodes removed, only one had "uncontained" tumor cells -- which, apparently as of 4 weeks ago the ICBC* concluded that the course of action is "do nothing." (BTW, what I could glean from this medical verbiage essentially amounted to: "dunno why this is the recommendation," but maybe it based on the assumption that the tumor cells could have been placed in that node by virtue of the initial diagnostic biopsy. OOPS! Medical conclusion, if that is the case, is that the little buggers won't survive because the environment they were "pushed" into is not conducive for them to grow. Hmmm. I summarized my understanding to the onc surgeon who responded, "yea...pretty much.")
How can I not be frustratingly sardonic, cynically appreciative of my situation, and surreally (sp..word?) challenged but all this expertise and knowledge?
All cynicism aside, and most importantly, I truly appreciate the random acts of kindness that I am shown daily by those who are following (and commenting on) my blog; those who care enough to ask me questions; and those who are thinking of me -- no matter WHAT you are thinking - at least I am in your thoughts.
*ICBC = industrial complex of breast cancer
I have heard from 6 lovely friends over the last three days. The commentary is all the same. I have read your blog and know what is happening, but HOW ARE YOU FEELING?
I found this an interesting question. Interesting, because this blog is my emotional outlet. The narrative of HOW I AM FEELING. So, I re-read my entries, and tried to be objective. From the entries it would seem to me that my feelings are indeed all encapsulated on this blog. They can be summed up, and in no significant ranking, as:
Frustrated
Cynical
Sardonic (is that a feeling?)
Appreciative
Challenging (more of an action-word, I know. but anyone who knows me knows that I am constantly in-motion)
Surreal (a sensation yes, but an emotion? probably not, but I include it because it really does captures the daily state of my mental being)
So, looking at the above list, it appears fairly comprehensive -- to me -- of where my head and emotions have been these last few weeks. With that in mind, to answer the question, how am I feeling?
WEELLLLLLLLLL..........
I hit my 3 week mark since the mastectomy and I am frustrated at my lack of stamina and the screaming of my nerve endings in the surgical site! Reminder: a mastectomy is the lobing off of an appendage, albeit a small and inconsequential one. Nonetheless, there is "shadow" pain associated with a missing appendage - no matter the nature of the protrusion.
I asked the reconstructive surgeon if it was "normal" to feel like my body is trying to purge the expander, a la Sigourney Weaver and ALIENS. YES! He answered quite enthusiastically. Apparently I just came up with another way of describing that my body is vociferously objecting the presence of a prosthetic.
What is surreal, is that I am a card-carrying prosthetic recipient. A synthetic "expander" now occupies the space under my chest-muscle wall, directly underneath where my breast innards used to be. Got the card in my wallet, complete with a picture and model #. I'm supposed to carry it there as a "just in case." Like, just in case I'm in an accident and the bugger pops! So with the card and the clean thong I keep in my handbag I'm giving a whole new meaning to the Girl Scouts motto: "Be prepared!".
I am frustrated in that speaking to the med pros, here in-state and out-of-state, I cannot pin down a personalized prognosis. (This is the second most asked question I get.) All I get is the insistence that in order to statistically have a chance at the "standard" 10 year survival rate for ILC I must succumb to the standard adjuvant treatments.
The emotional and mental challenge of this lack of individualistic answer is that my PetScan came back with NOTHING, NADA, RIEN, NICHTS remarkable. Indeed, my margins after the removal of the entire left-lady were clean. Annnnnddddd, of the 3 lymph nodes removed, only one had "uncontained" tumor cells -- which, apparently as of 4 weeks ago the ICBC* concluded that the course of action is "do nothing." (BTW, what I could glean from this medical verbiage essentially amounted to: "dunno why this is the recommendation," but maybe it based on the assumption that the tumor cells could have been placed in that node by virtue of the initial diagnostic biopsy. OOPS! Medical conclusion, if that is the case, is that the little buggers won't survive because the environment they were "pushed" into is not conducive for them to grow. Hmmm. I summarized my understanding to the onc surgeon who responded, "yea...pretty much.")
How can I not be frustratingly sardonic, cynically appreciative of my situation, and surreally (sp..word?) challenged but all this expertise and knowledge?
All cynicism aside, and most importantly, I truly appreciate the random acts of kindness that I am shown daily by those who are following (and commenting on) my blog; those who care enough to ask me questions; and those who are thinking of me -- no matter WHAT you are thinking - at least I am in your thoughts.
*ICBC = industrial complex of breast cancer
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