Showing posts with label ionizing radiation. Show all posts
Showing posts with label ionizing radiation. Show all posts

Thursday, July 28, 2011

Think...think...think

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This round of research is more daunting than when deja vu first came calling. I am trying to educate myself on the pros & cons of the two scenarios that have been thus far presented:

Select removal of the impacted axillary lymph nodes followed up by radiation of the chest wall

or

Full axillary nodal dissection

So far nothing that gives me an understandable comparison. Most of the journal articles that I have found all conclude their findings with the impact on early stage breast cancer. I am advanced stage, metastatic (now).  And, although I "remembered", I am hit anew with the short-term objective of all studies, i.e., 5-year disease free survival.

Ah...WWPD????

Wednesday, February 9, 2011

Sentinel Node Biopsies (SNB)...Unnecessary?

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Normally when I reprint an article or study for PSA purposes I don't include, within the text, my own editorial comments. In this case, with this study, I feel compelled to throw my "two cents" in ... smack dab in the middle of the reporting. My comments, editorials, opinions, etc are noted in italics. Read on...the "dogma is strong!"

Lymph Node Study Shakes Pillar of Breast Cancer Care
By DENISE GRADY (February 8, 2011 - NY Times)

A new study finds that many women with early breast cancer do not need a painful procedure that has long been routine: removal of cancerous lymph nodes from the armpit.

Medical diagram of SNB Prep
Part and parcel of my mastectomy back in August 2009 included what is termed: a sentinel node biopsy (SNB). This is where, as a matter of protocol, the surgical oncologist removes the first few nodes from the armpit, closest in proximity of the cancerous tumor. This is surgically accomplished after a lengthy prep of injecting the nodes - through the breast tissue, with radioactive material. The trick is then to keep the patient (moi) still for nearly an hour's time, to allow the radioactive material to settle into the nodes. It is this "settling" that gives the surgeon direction as to which nodes to remove. Once removed, and while the mastectomy is concurrently being done, a pathologist reviews these nodes and determines if any further excision is required.

The discovery turns standard medical practice on its head. Surgeons have been removing lymph nodes from under the arms of breast cancer patients for 100 years, believing it would prolong women’s lives by keeping the cancer from spreading or coming back.

One would think that after 100 years of post-surgical study that this "new" information / possibility / probability should have, could have been discovered / explored sooner. The latency of this revelation, in and of itself, is greatly disturbing. And there is the tiny little fact that DESPITE having had a SNB; and DESPITE the fact that I did have one positive node but current medical protocol was to ignore it as a "false positive" -- attributable to the SNB itself...nearly two (2) years to the day it is confirmed that my breast cancer has indeed spread into my lymphatic system. What does this mean? Well, because of the active lymph nodes being so close to the primary tumor site, there is a very high probability that distant organs are affected. The challenge with ILC is, however, that it is difficult to early detect any potentially affected organ because until the invasive forms into a detectable mass. Which is my cancer hx thus far.

Now, researchers report that for women who meet certain criteria — about 20 percent of patients, or 40,000 women a year in the United States — taking out cancerous nodes has no advantage. It does not change the treatment plan, improve survival or make the cancer less likely to recur. And it can cause complications like infection and lymphedema, a chronic swelling in the arm that ranges from mild to disabling.


Example of lymphedema
patient with a medical sleeve
I was very fortunate. Aside from some initial post-surgical swelling, I did not develop lymphedema -- although my med-pro team was fully anticipating I would. Because of the SNB, however, I need to ensure that during any sort of medical examination (routine or otherwise) my blood pressure is not taken on my left side -- the SNB site. Reason: lymphedema can occur at any time by this simple routine exam as a result of having had an SNB. It is notable that even when I am being examined by a member of my "cancer team" I still have to remind each and every one of them -- each and every time, not to measure my blood pressure on my left-side. Inevitably, and strangely, they all gravitate to the left.

Removing the cancerous lymph nodes proved unnecessary because the women in the study had chemotherapy and radiation, which probably wiped out any disease in the nodes, the researchers said. Those treatments are now standard for women with breast cancer in the lymph nodes, based on the realization that once the disease reaches the nodes, it has the potential to spread to vital organs and cannot be eliminated by surgery alone.

This aspect of the study particularly interests me for two reasons: (1) One of out of the three nodes that I had removed did test positive for cancer cells. I was told, however, that because of a then-recent study in 2009, protocol had changed and advised that there was a strong probability that cancer cells are unintentionally injected into the nodes as a result of the surgical procedure itself. As such, since it was my third node that was positive, the "protocol" was "to do nothing" further, surgically. (2) That said, anyone following my journey will know that I opted out of both chemo and radiation -- despite the heavy-handed pressure by my "cancer team" to aggressively pursue both. I opted out, because of: (a) the disparity within the global medical community as to the efficacy of chemo and radiation in prolonging life after cancer; (b) my own personal "efficacy" test (Oncotype DX) that concluded I would only have up to a 4% margin of efficacy if I underwent chemo; and (c) not finding one medical professional who themselves would subject themselves to radiation treatment (though none of them would "publicly" admit these personal views).

Experts say that the new findings, combined with similar ones from earlier studies, should change medical practice for many patients. Some centers have already acted on the new information. Memorial Sloan-Kettering Cancer Center in Manhattan changed its practice in September, because doctors knew the study results before they were published. But more widespread change may take time, experts say, because the belief in removing nodes is so deeply ingrained.

“This is such a radical change in thought that it’s been hard for many people to get their heads around it,” said Dr. Monica Morrow, chief of the breast service at Sloan-Kettering and an author of the study, which is being published Wednesday in The Journal of the American Medical Association. The National Cancer Institute paid for the study.

This again begs my initial question -- why did this "radical change" take 100 years to publicly disseminate.

Doctors and patients alike find it easy to accept more cancer treatment on the basis of a study, Dr. Morrow said, but get scared when the data favor less treatment.

The above statement makes me ponder just how many of us "patients" they polled. Sadly, I find that many of my fellow breast cancer-club member's have made far-reaching medical decisions solely based on their initial fears. On the other hand, I have also found, and continue to find, a growing number of club members who share my belief that decisions can only be made after extensive research and questioning. And, after extensive research and questioning many of us discover that the "science" behind adjuvant treatment does not play out in our favor; so we opt-out.

The new findings are part of a trend to move away from radical surgery for breast cancer. Rates of mastectomy, removal of the whole breast, began declining in the 1980s after studies found that for many patients, survival rates after lumpectomy and radiation were just as good as those after mastectomy.

The trend reflects an evolving understanding of breast cancer. In decades past, there was a belief that surgery could “get it all” — eradicate the cancer before it could spread to organs and bones. But research has found that breast cancer can begin to spread early, even when tumors are small, leaving microscopic traces of the disease after surgery.

Sentinel node biopsy incision
To the credit of my surgical oncologist (Lise Walker) she was not so arrogant as to believe that surgery could "get it all."  Indeed, she and I had a spirited discussion of the known microscopic cancer cells that were left in my body post-mastectomy. FYI - I did not have the option of a lumpectomy. My tumor was 6.2 cm - i.e., of such expanse that it spread throughout my entire left breast. BTW - it was in Lise Walker's office that I first discovered the book: "What Your Doctor Won't Tell You About Breast Cancer."

The modern approach is to cut out obvious tumors — because lumps big enough to detect may be too dense for drugs and radiation to destroy — and to use radiation and chemotherapy to wipe out microscopic disease in other places.

Modern? Cut, slash and burn has been the protocol for over 50+ years.

But doctors have continued to think that even microscopic disease in the lymph nodes should be cut out to improve the odds of survival. And until recently, they counted cancerous lymph nodes to gauge the severity of the disease and choose chemotherapy. But now the number is not so often used to determine drug treatment, doctors say. What matters more is whether the disease has reached any nodes at all. If any are positive, the disease could become deadly. Chemotherapy is recommended, and the drugs are the same, no matter how many nodes are involved.

This latter sentence is frightening. Not because it causes me to reflect on my choice not to undergo adjuvant treatment. But because it is these types of statements that were used to try and bully me into acquiescing to chemo and radiation -- despite the undisputed medical conclusion that I would not benefit from chemo. It is these types of statements that plant fear into persons dealing with breast cancer and emotionally and mentally inhibits them from becoming informed patients.
Injection of the the radioactive material
in prep for the node biopsy

"...and the drugs are the same, no matter how many nodes are involved." This admission also sends chills down my spine. It should be a big ol' red flag that in light of it taking the med-pros 100 years to publicly declare this "nodal" revelation, that the med-pros are still unwilling, as a community, to reveal that the "standard protocol" for treating breast cancer reached a plateau decades ago. Refer back to my "audience with the Great Oz back in September, 2009."

The new results do not apply to all patients, only to women whose disease and treatment meet the criteria in the study.

The tumors were early, at clinical stage T1 or T2, meaning less than two inches across. Biopsies of one or two armpit nodes had found cancer, but the nodes were not enlarged enough to be felt during an exam, and the cancer had not spread anywhere else. The women had lumpectomies, and most also had radiation to the entire breast, and chemotherapy or hormone-blocking drugs, or both.

The study, at 115 medical centers, included 891 patients. Their median age was in the mid-50s, and they were followed for a median of 6.3 years.

After the initial node biopsy, the women were assigned at random to have 10 or more additional nodes removed, or to leave the nodes alone. In 27 percent of the women who had additional nodes removed, those nodes were cancerous. But over time, the two groups had no difference in survival: more than 90 percent survived at least five years. Recurrence rates in the armpit were also similar, less than 1 percent. If breast cancer is going to recur under the arm, it tends to do so early, so the follow-up period was long enough, the researchers said.

One potential weakness in the study is that there was not complete follow-up information on 166 women, about equal numbers from each group. The researchers said that did not affect the results. A statistician who was not part of the study said the missing information should have been discussed further, but probably did not have an important impact.

It is not known whether the findings also apply to women who do not have radiation and chemotherapy, or to those who have only part of the breast irradiated. Nor is it known whether the findings could be applied to other types of cancer.

The results mean that women like those in the study will still have to have at least one lymph node removed, to look for cancer and decide whether they will need more treatment. But taking out just one or a few nodes should be enough.

Dr. Armando E. Giuliano, the lead author of the study and the chief of surgical oncology at the John Wayne Cancer Institute at St. John’s Health Center in Santa Monica, Calif., said: “It shouldn’t come as a big surprise, but it will. It’s hard for us as surgeons and medical oncologists and radiation oncologists to accept that you don’t have to remove the nodes in the armpit.”

Dr. Grant W. Carlson, a professor of surgery at the Winship Cancer Institute at Emory University, and the author of an editorial accompanying the study, said that by routinely taking out many nodes, “I have a feeling we’ve been doing a lot of harm.”

Indeed, women in the study who had the nodes taken out were far more likely (70 percent versus 25 percent) to have complications like infections, abnormal sensations and fluid collecting in the armpit. They were also more likely to have lymphedema.

I can attest to the abnormal sensations (euphemism for pain), that continue each and every day, to this day, since the SNB and mastectomy in August 2009.

But Dr. Carlson said that some of his colleagues, even after hearing the new study results, still thought the nodes should be removed.

“The dogma is strong,” he said. “It’s a little frustrating.” 

This understated sentiment can be broadly applied in all aspects of the breast cancer industry.

Eventually, he said, genetic testing of breast tumors might be enough to determine the need for treatment, and eliminate the need for many node biopsies.

BRCA Genes I & II Mutation
Had extensive genetic testing prior to the SNB and mastectomy. Did not alter the course of treatment adamantly lobbied for by the "cancer team."

Two other breast surgeons not involved with the study said they would take it seriously.

Dr. Elisa R. Port, the chief of breast surgery at Mount Sinai Medical Center in Manhattan, said: “It’s a big deal in the world of breast cancer. It’s definitely practice-changing.”

Dr. Alison Estabrook, the chief of the comprehensive breast center at St. Luke’s-Roosevelt hospital in New York said surgeons had long been awaiting the results.

“In the past, surgeons thought our role was to get out all the cancer,” Dr. Estabrook said. “Now he’s saying we don’t really have to do that.”

But both Dr. Estabrook and Dr. Port said they would still have to make judgment calls during surgery and remove lymph nodes that looked or felt suspicious.

The new research grew out of efforts in the 1990s to minimize lymph node surgery in the armpit, called axillary dissection. Surgeons developed a technique called sentinel node biopsy, in which they injected a dye into the breast and then removed just one or a few nodes that the dye reached first, on the theory that if the tumor was spreading, cancer cells would show up in those nodes. If there was no cancer, no more nodes were taken. But if there were cancer cells, the surgeon would cut out more nodes.

Although the technique spared many women, many others with positive nodes still had extensive cutting in the armpit, and suffered from side effects.

A lymphedema patient, without
the medical sleeve
“Women really dread the axillary dissection,” Dr. Giuliano said. “They fear lymphedema. There’s numbness, shoulder pain, and some have limitation of motion. There are a fair number of serious complications. Women know it.”

After armpit surgery, 20 percent to 30 percent of women develop lymphedema, Dr. Port said, and radiation may increase the rate to 40 percent to 50 percent. Physical therapy can help, but there is no cure.

The complications — and the fact that there was no proof that removing the nodes prolonged survival — inspired Dr. Giuliano to compare women with and without axillary dissection. Some doctors objected. They were so sure cancerous nodes had to come out that they said the study was unethical and would endanger women.

“Some prominent institutions wouldn’t even take part in it,” Dr. Giuliano said, though he declined to name them. “They’re very supportive now. We don’t want to hurt their feelings. They’ve seen the light.”

Wednesday, October 6, 2010

Nurse Tracy Calling

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Four Winds Oncology, can you hold?

Of course

May I help you?

May I speak with one of Dr. Obenchain’s nurses?

I’m Nurse Tracy, I can help you.

Oh hi Tracy. I don’t believe we have met before. This is “TC” I got a letter from SMIL stating they it was imperative they do additional studies, to supplement my breast MRI last Tuesday. I have called them. They want to do a mammogram on my right breast and an ultrasound on my left. They will need the doctor to fax over orders. But, I have a couple of questions that I need answered before we proceed.

Of course. Tell me what they are and I will talk to doctor and get back with you, and I will talk to her about the orders.

Thank you, my questions…concerns, rather are (1) since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram – even a diagnostic mammo, why do we need to do either? SMIL said that the MRI images were perfect in clarity; and (2) what is SMIL seeing on the MRI that makes them (a) want to do additional exams, and (b) what less comprehensive exams tell us that the MRI can’t?

I can’t answer those questions, I will have to request the report, have doctor review it and call you back.

Yes, I realize that, thank you. I would appreciate you following up with the doctor, thank you.

4 hours later….

Ms. TC, this is Nurse Tracy calling from Dr. Obenchain’s office. I have your answers. SMIL says that they do not have a current mammo on your right breast and want it for their records, so that is the reason for that follow up exam. Regarding the ultrasound, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there. That is the reason for the ultrasound request. The doctor said that's fine, and I am preparing the orders to fax over to the lab now.

Oh. What about my initial question?

What was that?

My question of necessity. Since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo, why do we need to do either?

Oh, as I said, because SMIL says that they do not have a current mammo on your right breast and need it for their records. And, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there.

Right, I understand what you are relaying as SMIL’s reasons, but isn’t it true that the MRI, that was just conducted 6 days ago, is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo. And as such, that it should give both SMIL and Dr. Obenchain the information they need to determine what is going on with the scar tissue as well as the status of the right breast?

Ms. TC, you haven’t had a diagnostic mammogram on the right breast in over a year. With your history, you need to have a diagnostic mammogram at least annually.

Tracy, I don't think I agree. I am not so sure that is necessary, in light of my history. The mammograms are not as effective as detecting ILC as an MRI.  My individual history includes the sequence of diagnostic events, in order of certainty, as: (a) diagnostic mammogram; (b) ultrasound; (c) biopsy; and (d) MRI. Knowing all this, I raise the question - isnt doing a mammogram now going backward, diagnostically speaking? And, therefore unnecessarily exposing me to radiation?

Ms. TC, radiation exposure to mammograms is minimal. You got significantly more radiation exposure with the MRI.

Um…Tracy. I don’t believe that is completely accurate. My understanding is that an MRI does not involve exposure to ionizing radiation. Doesn't an MRI use magnetic fields and radio frequency pulses – not radiation. Mammograms, on the other hand, do indeed use ionizing radiation – I know the radiation levels are not astronomical but it is certainly higher than an MRI. Besides, aren’t there more risks of false positives with mammograms than MRIs?

(Pause...heavy sigh...) Ms. TC, it is your choice as the patient, if you do not want to have the mammogram that is just fine. I will note that you are declining the mammogram here in the file. Is there anything else, otherwise I do need to attend to other patients.

What about the necessity of the ultrasound? My understanding is that the MRI would be more conclusive in determining what is going on with the scar tissue than an ultrasound.

Again, Ms. TC, it is your choice if you do these exams or not. Doctor has signed the orders. Just let our office know what you decide. Have a good day.





I hung up and immediately started writing. Since the beginning of this journey I have always kept a journal when meeting with or talking to any and all medical professionals. There is too much information and bias that is thrown out there, and taking notes is the only way I can properly process and distill everything in my own time and context. With the second conversation, four hours later, I was keeping copious notes. I wanted to confirm for myself whether or not my questions had indeed been answered - or not. It is entirely possible that I am suffering some residual effects from last week’s concussion and was just not "hearing" Nurse Tracy. Though, I am fairly certain - upon review, that the substance of my questions were never addressed.

Thank you, Nurse Tracy, you have a good day too!