i like it . Excellent presentation
I am a retired, 65 year old, African American female, from Georgetown, South Carolina, 35 miles from Myrtle Beach, 60 miles from Charleston and 120 miles from Columbia..
I have been diagnosed with a Triple Negative cancerous nodule, close to the surface, on top, to the right side of my right breast. I was diagnosed after a mammogram and ultrasound needle biopsy. It's about 0.6 cm long and sort of narrow. I was, also, diagnosed with more recurring DCIS, in my right breast.
Five years ago, in 2010, I was also diagnosed with only (1) DCIS, in my right breast, and treated with a lumpectomy and radiation, just to that area. The DCISs that have recurred are close to the old treated area. The nodule I have, now, is on the same side of my right breast, not in the same spot, but close to it.
I also, had a mammogram needle biopsy of that old DCIS area to determine if there were new calcifications or just scarred tissues. So the lab results is what showed that more DCIS recurred.
I, also, had a MRI and chest x-ray to determine if there was anything else going on. The MRI and X-ray did not show anything extra.
I feel that my condition was over treated and that is why my condition is what it is today.
For now, I will just wait a while, before making any big hasty decisions, so far as surgery and chemo.
I'm leaning towards an alternative treatment plan, because my surgeon has already told me that my type Triple Negative Breast Cancer does not respond very well to chemo. So why give me a mastectomy, followed by the Chemo?
I am very interested in The Bircher Cancer Institute for The Hyperthermia And Low Dosage Radiation Treatment Program.
Thanks for any replies and encouragement.
Is there a database of women with diagnosed ER+/PR+ DCIS who have opted not to have radiation or hormone therapy after lumpectomy?
I have a DCIS grade 2 <3cm. I just looked at the presentation and agree totally. I don't want poisons in my body. I may have a lumpectomy but really don't like that idea either bc I am 65 yrs old.
OVERDIAGNOSIS OF CA DUE TO SCREENING LEADS TO INCREASED RX RELATED MORDIDITY.
I agree. Excellent presentation.
We should take serious consideration on the molecular aspect. If the patient already has defects in BRCA1, BRCA2, p53, PTEN etc could we still afford to sit on her DCIS lesion? or for that matter, if she has been also exposed to alcohol, tobacco, radiation of any kind, immune suppression of any kind? The patient's wish should also be considered. May be she doesn't want to take the slightest risk and no doctor or guideline could guarantee 100% risk-free.
Of course if she is already over 90 and suffering from severe heart, lung, kidney and other organ failures then she is unlikely to die of the potential risk of breast cancer from DCIS and we should leave her breast alone.
I appreciate the presentation of Jessica. She had the red flags in her investigations, but for years her doctors ignored it because it was the fashion (and still is) to call excision of DCIS over treatment. Do we leave carcinoma in situ in the skin or the uterine cervix and let them grow? Common sense and patient safety should take precedence over trends and "guidelines". The only situation when a DCIS may be put on tight observation and not removed should be when the patient explicitly refused surgery after thoroughly informed of the cancer.
Unfortunately, my experience with breast cancer and DCIS points to overtreatment in patients that don't need treatment and under treatment in patients who do. I had a suspicious mammo in 2005 which led to a stereotactic biopsy (which I now know was from the wrong spot) leading to a result of benign calcifications. I had on average 2 mammos per year because of dense breasts and the "benign calcifications" continued to grow and spread for 5 years (7 cms) before rebiopsying-- again with stereo. In 2010 I was diagnosed with nuclear grade DCIS covering the entire lateral right side of my right breast. It took fie years to get to that point. An MRI confirmed DCIS (pre-mastectomy) despite a notation that there was a 3cm mass. The MRI report also recommended returning in 6 months for follow-up MRI on the left breast because of birads 3 finding on the left breast. I opted for bilateral mastectomy (which your Drs. would view as overtreatment). The sentinel node biopsy during mastectomy found cancer in the lymph node and the final path report was Stage 2b invasive cancer with an 8mm positive lymph node (1/12), 2.5 cm IDC and at least 3 cm of DCIS. Based on my worthless screening and biopsy results, your recommendations would have been to delay surgery.
My sister in law a year after 5 years of Tamoxifen with SSRI (hah!) for a tiny lesion (4 mm) of DCIS in the right breast treated with lumpectomy and radiation had an MRI report recommending a 6 month MRI follow-up because of a 4 mm probably benign lesion on the contralateral breast. I told her to see her breast surgeon and ask for a biopsy. He said it wasn't necessary after performing an ultrasound. My sister in law called me as she was leaving the Dr's. office, and I told her march back in there and insist on a surgical biopsy, which he performed in office the same day. The path report came back IDC--Stage 1 Grade 2.
I have little confidence in the medical profession to diagnose or treat breast cancer. Perhaps as your playing with words, you might recognize that breast disease is breast disease which warrants care. What that care should be will probably take another 30 years to sort out. But it should be better than the care I was offered. I was told in 2005 by the breast surgeon that I am "just a lumpy bumpy person and I don't need to come back unless I have another positive mammogram."
Incidentally, in 2011, the manager in the radiologists practice when asked why the Drs. just watched my cancer spread and grow for 5 years before rebiopsying replied that "they get in trouble if they have too many false positive mammos."
I am a strong believer in looking at the biology as well as the physiology of a tumor. I declined chemo despite my positive lymph node and oncotype score of 23, (ki67 15%) but I had an oophorectomy and have been on Arimidex. If I were told that I had circulating tumor cells which put me at high risk of recurrence and that those cells were highly proliferative, I would take chemo in a heartbeat. If most breast cancers are er positive and slow growing and the risk of recurrence increases after year five, why aren't you testing to administer chemo in the later years when it would be more beneficial-- when cancer cells materialize but aren't yet metastasized? Oh right, you need 50 years of clinical trials first.
I am an argentine oncologist and I feel while read your case that your drs are "talibans of algoritms". It's difficult to believe that with such progress in size lesion, such evolution, your age they only follow the algorithm. Where is the personalized medicine, where is the palpation and the semilogy of the breast, where is the common sense? It's naive believe that only few millimeters of a lesion of five centimeters can offer the whole information of the tumour.
Gustavo, thank you for your comments. The most significant question you pose is where is the common sense? This is the question I have been asking since my diagnosis in 2010. I have no medical training, but following a long list of missteps by Drs. following my mastectomy, I don't take ANYTHING my Drs tell me at face value. I just read a report claiming that there is no value in screening women who have dense breasts with ultrasound screening in addition to mammograms.( Brian L. Sprague, Ph.D., of the University of Vermont, Burlington, and his colleagues reported the findings in the Dec. 9 edition of Annals of Internal Medicine) I was never told that I had dense breasts (notification law was not passed in my state until after my cancer diagnosis-- the law is only passed in 19 states) and that the reality of screening those patients with dense breasts by mammo is only 50% accurate. So here is another common sense question, if mammos are only 50% accurate in women with dense breasts, why give those women mammograms ,yet alone in my case repeat mammos 2 to 3 times per year ("for better views") exposing them to additional radiation? (Here's a hint: Susan Komen)
SABCS is taking place now. The big study update that everyone is anticipating is the SOFT trial to see if Tamoxifen with ovarian suppression is better than Tamoxifen alone. In order for the SOFT/TEXT study reported this past summer to be inconsequential, Tamoxifen with ovarian suppression would have to be INFERIOR to Tamoxifen alone, because we already know that ovarian suppression plus AI is superior to ovarian suppression with Tamoxifen. My interpretation, is that this provides another option for ER positive pre-menopausal women-- 30% relative reduction (AI vs Tamoxifen) is the same relative reduction achieved with chemo.
By the way I had a DEXA before I started Arimidex, and per the Standard of Care did not have another until 2 years later (standard of care equals what insurance will approve). I lost 17% of my bone mineral density in 2 years, despite vitamin D, calcium and yoga-- on the AI. I now have osteoporosis at age 55 and am also on a bisphosphonate (drugs to deal with side effects of other drugs) Since my mastectomies I have had additional biopsies and MRIs-- I have "distorted residual breast tissue at my cancer site and an inner (inter?) mammary lymph node in the cancer side breast despite an axillary node dissection and mastectomy.
I hope cancer care is better in Argentina. I have little hope for cure until the money is taken out of the breast cancer conglomerate and there is accountability for how the money is being spent. (For example: $1.5 million to Columbia University to conduct a study see if text messaging 50 women on AI will help keep them compliant with taking their medicine.)
In the meantime, I have tempered my expectations regarding my Drs and rely on my own common sense.
Dear Jessica, I really apologize for touch a paintfull side of your personal history. I don't think in Argentine the cancer care is better, we have a very heterogeneous reality. I know you have excellent physicians in US and very advanced technology. I'm in SABCS now!
Mistakes are behind the corner in all places. MRI have a relevant role in patients with dense tissue breast, indeed, but in Argentine isn't available for everybody.
By the other hand I'm agree with the regards of the adverse effect of the medicines, but still think the aromasin is the best choice for you, although the loss of your mineral density. The fight against the cancer is a large battle where lost occurs.
I wish you can focus on your healthy side more than the illness one. You are in remission and the future is waiting fou you. The past can't change.
Nice share opinions with you. My best wishes.
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