Still waiting to move forward? I want to hear from you!

Hi, Trichick1964,

Thank you for writing. I am sorry to hear that you are high risk for breast cancer due to your family history. Although my mother has breast cancer and now metastatic breast cancer in her bones and liver, I understand from reading and from what others have told me on this site that it is unlikely that I am high risk. My mother probably has breast cancer due to being given high doses of diethylstilberol (DES) during pregnancy. That gave her a 30 percent increased risk of breast cancer over a typical woman. I only have a 2 percent extra risk from being exposed to DES in utero. So, unless I have genetic tests that reveal a genetic risk for breast cancer, I am not high risk. And, it is possible that I have the genetic risk factor, as we may have hidden Jewish roots , but I have not yet been diagnosed with invasive breast cancer, and I am 60 years old now.

So, I know that Dr. Esserman is very controversial but I still think she is raising some very important viewpoints. There is apparently a Time magazine article today on the topic under discussion. I am going to post the link if I can find it. What really bothers me is that the surgeon's nurse called at on Fridayafter I had a limited lumpectomy on Monday (excisional surgical biopsy) and told me that I have DCIS that will definitely turn into breast cancer. It was a scare tactic that I think was designed to get me on the surgical table for the second time in three weeks. I am putting the brakes on everything to plan for the best and worst case scenarios. If I had reacted in fear, I might have had surgical complications that would have placed me in debt for the rest of my life. After joining this site and talking to friends, family, and healthcare providerers I trust, I have determined that taking action too quickly on a DCIS diagnosis unless there is clear evidence of invasive cancer cells intermingled with the DCIS cells, and rapid treatment without understanding the facts can have lifelong personal and financial effects on a woman and her family. I am going to take out an expensive supplemental policy before I do anything major. Just one unexpected development such as the need for chemo and radiation after a mastectomy could lead to thousands and thousands of dollars in medical bills, enough to sink a woman on a limited income.

percy4, kayb and dtad,

Wow, thank you all for very thoughtful replies. I contacted a very prominent surgaical oncologist by email a few days ago and explained my situation and asked for help locating a surgeon in my state at a big teaching school.See the next paragraph for additional information. For anyone on this board reading this post, do know that there are many doctors out there in high level teaching jobs, especially at medical schools and universities that receive Federal monies, who will help you if you can find their email and write them. In many cases, it is surprisingly easy to find the email addresses. In fact, many doctors at these teaching institutions may have a civic duty to serve the general public and they will most often reply to an email if they are taking Federal dollars for clinical studies. Many are actually interested in your situation, and some are looking for patients to join their clinical trials. It costs nothing to write a polite email asking for help.

The very well known surgeon I wrote kindly took an interest in my case and went ahead and contacted a highly qualified surgical oncologist in my state at a university-based teaching hospital about four hours from where I live. That doctor has agreed to meet with me to discuss ALL of the options and to work with me in a cooperative/collaborative way. As for the surgeon that did the limited lumpectomy (excisional needle) biopsy, I am washing my hands of him. He did a decent job in extracting the large sample, although it appears that the samples were unoriented, and I want another pathologist to review the slides from the tissue sample. I agree that the surgeon fell down gravely on the job in communicating with me, and I think it was irresponsible for him to have his nurse call me, as she clearly did not know how to explain the medical information in an accurate manner. I wish I could run around this small town and tell everybody I know to avoid the surgeon. If someone asked me about him, I would tell the truth. However, telling my story would risk my making an enemy. In a relatively small town, there are serious consequences to publically criticizing a doctor.

So, I would like an informal poll here. Dear readers, would you let the surgeon know in person why you decided to find another doctor for the job? I would be glad to pay the $29.00 co-pay and sit down with the surgeon and tell him face-to face- why I put a sudden halt to his doing the surgury. In other words, I would clearly explain what his office did that made me go in search of answers. I might have to bring a friend with me to keep from blowing my stack. In fact, I refused an appointment with the doctor after the patient care coordinator finally called his office and explained that she thought I needed to speak with him in person to go over the pathology report. I refused the appointment because I really did think that I might have a meltdown, and it would not have been a pretty sight. I am calmer now that I understand more about my diagnosis than I did two weeks ago. I am frankly glad his nurse screwed up so badly, as I believe that it has led me to a situation where I will get better care than I would have gotten AND I will have one of the best informed surgeons in the U.S. at a major teaching university.

I am not sure about the size of the tumor. I don't know the full size of the lesion because the surgeon did not manage in the limited lumpectomy to remove all of the DCIS cells. I will keep in mind that I may need another procedure to remove the rest of the cells. I am afraid it may be too large to avoid having radiation, and that would leave me with having a mastectomy. I have serious health problems, and my mother is rapidly declining due to metastatic breast cancer that is slowly but surely draining her life out of her body. I will pull up the path report that I transcribed and include the size of the tissue sample removed in my next post. The tissue samples from a limited lumpectomy showed no microinvasion, and the surgeon sent a large cell sample for the study. The cells were either close to the margins or apparently reached the marginsbut the path report is confusing about the margins. I don't know the size of the lesion because they haven't taken all of the cells out yet. I had to stop and catch my breath and do some research before it was too late for me to make an informed decision.

kayb, it is a difficult decision. The surgeon at the teaching university has agreed to work with me in response to the direct request from the very well known surgical oncologist that contacted her on my behalf. I think that means she might be willing to go along with the watch and wait or active surveillance process or perhaps some modification that deviates from the accepted standard of care. I am a risk taker by nature. It is a trait not frequently found in a woman. I have walked the streets of major cities at night by myself. I worked in a major metropolitan area for nearly 18 years, and I often stepped out to the curb to hail a taxi at 2:00 a.m. because I was working late. I never married. I got very sick and decided to refuse IV antibiotic treatment for Lyme disease. I am still struggling with Lyme and the horrendous pain from fibromyalgia that may be the result of chronic Lyme disease but I do not regret the decision to ditch a Lyme doctor who pressured me to have in IV line placed in my chest for antibiotic therapy that would have made her rich. At the time, it seemed like an unwise decision, but now, I think I made the correct decision. IV therapies are now being used in the most resistant Lyme cases, and combination oral therapies with rotation have proven in many cases more effective than single dose IV therapies. Yesterday, one of my doctors offered to work with me on a combination therapy that might at least push the Lyme way back and reduce the symptoms I am having.

My situation is that I have a mother dying from metastatic breast cancer, a brother who cannot work and who has lost significant mobility from a diabetic foot infection that took one-third of his foot along with my own horrendous and disabling pain from fibromyalgia and most likely Lyme disease and/or other co-infections. I also have severe anxiety and ADHD and live on a limited income. I was once a high level professional with a great income and a wonderful life. Now, I am disabled, and the idea of going through cancer surgery and all the personal and financial tolls that this surgery entails are nearly overwhelming. I am fortunate to have a shrink that wrote me a full dose prescription for Naltrexone, a drug used to treat alcoholics. He is giving it to me in hopes of shutting down the pain mechanism entrenched in my body that causes my nerves and tendons to freeze into clusters and pull on my nerves which then send out constant pain signals through my body. His treatment is outside the standard of care, but I promised not to sue him. It carries a remote risk of liver damage, but my liver and kidneys are in great shape, and the doctors can monitor my live and kidney function carefully. Now, with the burden that I am carrying, I am simply unsure that I want my body to be assaulted at this moment by a mastectomy. In my situation, radiation is simply out of the question.

So, I may choose a less traveled path and live as long as I live. I am really not sure what I plan to do. I am going to meet with the surgeon at the teaching university and ask her to discuss ALL of the possible options with me. Then, I will make some kind of decision. It may not be an ultimate decision. Everybody says that I some time. I don't have years, but I have some time to think about all of what has happened.

Hey, percy4,

I think you travel around this site being a guardian angel for kind souls in danger of sinking into quicksand. I somehow got in trouble with one of my brother's doctors, and I will never know what happened. All I know is that my brother went into to meet with his surgeon, and the doctor threw a paper at him and made him sign it. My brother had to agree that I would not be able to call the doctor's office, would not be able to talk to my brother's nurse, would not be able to obtain any information about my brother's treatment. Why? I don't know. I may have repeated a funny story that I heard about the surgeon to a vindictive person who then told the surgeon. I am not certain but that awful person may work for one of the home health agencies that I had to fire because 1) the nurse released my brother from care saying he was in great shape while failing to turn over his foot and make a note in the files that he had gangrene 2) the nurses failed to notice that my mother was losing too much weight to quickly and had started to look like a concentration camp victim and failed to suggest that my mother take an appetite stimulent. So, I had to fire the agency, and I may have told the story to someone at the agency. This is a small town. We have an okay home health agency now (I think they are massive scams, but we need the agency in case my mother gets sick since I live out in the country with my mother and brother) now, and the current nurse asked me the name of the doctor who was in my opinion regligent. I said I didnt want to say and she begged me,and I told her. She drew in a sharp breath and said that the surgeon had done quite a few operations on her family members. She is a very nice person, the nurse, and I made her promise that she would not spread negative information about the doctor because I don't want yet another doctor in the same practice group angry at me. In the meantime, I called the business office of my brother's doctor the other day, and I said that my brother had gotten a weird notice threatening him. I said that I paid the bills, and that the doctor had forbidden me from calling the office. So, the business office person said the notice was a mistake, but she said my brother had to come in and sign new paperwork in order for her to speak with me. And, to end this silly story, the surgeon had coerced my brother into signing the other paper because it was a day before my brother's surgery to remove the rest of his toes and big part of his right foot from a diabetic infection. Now, since the surgery is over, my brother is going to sign new paperwork saying that I am approved to receive informationn about his case. Again, this is a small town, but I will report the surgeon to the State Medical Board if he ever tries to coerce my brother again before a surgical procedure. My brother couldn't run the day before surgery to get another doctor but I think we may take him to the university teaching hospital if he requires any more surgery. So, I get what you are saying about the surgeon who was supposed to do my breast surgery. It is not worth the time and effort to try and straighten him out. Still, there is a part of me that would like to make him very uncomfortable for 40 minutes - the time that Medicare allows for an office visit. At the very least, maybe I will sent him him a polite note saying that I decided to have the surgery performed at a major teaching hospital where I would receive in-depth counseling from the surgeon about all of the options available to me. I have a very fine literary background with significant study as a writer, and it would be satisfying to use some well chosen words to deliver a biting sting. A waste of time? Maybe. There has to be a story in here that I can tell to make some money to pay my medical bills.

Hi, percy4,

Thanks for telling me about Michael Lagios. Well, $700 is a small fortune to me. I live in an area of the country where the cost of living is relatively low, and nobody has much money! I am on a limited income. It is a challenge for me to pay for a new supplemental insurance policy to cover additional surgery and to pay the transportation and housing expenses to travel to the teaching hospital four hours from me. Well, we'll see.

My pathology report was not extensive! It was very brief. I have posted it in this forum in a new posting. I think most of my pathology report relates to my fibrocystic breast disease, not DCIS.

So, you read my path report, yes? I thought they did definitely find DCIS based on what they said in the report. No? The nurse from the surgeon's office said they definitely found DCIS. Can you please explain?

Excellent commentary. Thank you all for weighing in. I have all of the reports and imaging disks except for initial mammograms and an ultrasound done on September 3 at another hospital. It is clear to me that I need to go ahead and get in touch with the new surgeon, send the path and other reports, and get the wheels in motion for a second review and opinion of the tissue slides from a different pathologist!