Newly Diagnosed in Florida.

Hi Mugadoon,

We're so sorry to hear of your diagnosis, and that you have to join us here, but really glad you found our incredible Community!

This piece of info from the main Breastcancer.org site may help:

Target your search within the National Cancer Institute (NCI)-designated cancer centers. The NCI, part of the federal government's National Institutes of Health, has recognized 68 cancer centers nationwide for "scientific excellence and the capability to integrate a diversity of research approaches to focus on the problem of cancer." Most of these centers treat people with cancer, although some focus only on research. Breast cancer experts at these centers are likely to be up-to-date on the latest diagnostic techniques and treatment options. In addition to searching online, you can call the NCI's Cancer Information Service at 1-800-4-CANCER or consult with an information specialist through LiveHelp.

We hope this helps! Please let us know how you make out.

--The Mods

moffit has a wonderful reputation but people I know have found the shear size of it to be overwhelming. Be prepared to be an advocate for yourself. But anywhere you go today you have to the system can seem overwhelming. I was considering going there myself and they were very responsive to my questions. My insurance would have paid more if I had chosen them as well as paid travel since they are a center of excellence.

hi Glennie!!!

Hi Mugadoon,

I'm sorry I couldn't get back with you yesterday. I understand about sorta feeling isolated in Citrus County with regard to access to specialized medical care. Fortunately, you do have excellent options very close to you, though. Although I graduated from UF, I was a student at USF for 2 semesters to take some classes that UF didn't offer. I loved the campus and the school, and when I later wound up there at Moffitt, I felt very comfortable. It's amazing how much Moffitt has grown!

I understand your feeling of not knowing what you need to know in order to make decisions about your care. There's so much to learn about treatment in general, plus there are quite a number of different variables that make up a particular woman's breast cancer. No two are exactly the same and many of us on these boards (myself included) never realized there were so many types of breast cancer or nuances that make each case so specific with regard to treatment, prognosis, etc. As for the importance of the NCI designation--in a nutshell, there are 3 different types of research institutions that are linked with the National Cancer Institute. Those are Basic Laboratories, Cancer Centers, and Comprehensive Cancer Centers. Basic Labs don't see patients, but they are involved in important cancer research, much or most of which is directed by the NCI. Cancer Centers are research institutions which also see patients as well as being involved in clinical trials, etc. from the NCI. Comprehensive Cancer Centers are the top of the three levels (this is what Moffitt's designation is), and perform the same functions as both of the others, but also must include translational care and general as well as specific patient and population outreach efforts.

Of course you will find many wonderful and knowledgeable physicians at local, community, and non-NCI-designated facilities; however, it's been my experience that the great majority of your MOs (medical oncologists) who have subspecialties are at NCI-designated facilities. This is because those are research focused institutions with greater patient populations from which to draw patients who match the physician's research and clinical interests. Very often, we as breast cancer patients, find ourselves in a small minority of a particular type of breast cancer, or some other quirk that is just better served by someone who not only is an MO who ONLY treats breast cancer, but may within that diagnosis, treat almost exclusively the patients that have that same unique diagnosis. I can't stress how important this can be for many of us. Using myself as an example: I was diagnosed in Ocala. My surgeon, who was classified as a "breast specialist" tried to discourage me for almost a month from getting a biopsy; he just didn't see the need. The first radiologist, at Advanced Imaging on 17th Street, classified me as a BIRADS 3, which is "probably benign" and told me to come back in 6 months. This radiologist also described my lump as a "breast nodule" and when I asked for clarification on what that meant, the answer I got (and I'm NOT kidding, this is verbatim) was, "it's a nodule in the breast." Only after I became a bit of a pain in the ass to the surgeon, did he agree to send me to get another radiologist's opinion. This time at Radiology Associates of Ocala Women's Imaging Center on SE 18th Avenue. His belief was that this radiologist who only does women's imaging would be able to put my mind at ease. I went and this radiologist was fairly confident that I didn't have a malignancy, but since he couldn't be 100% certain, he felt it would behoove me to have a biopsy. He assigned me a BIRADS 4a "low suspicion of malignancy" rating. Fast forward a couple weeks to when I got the results of the biopsy. My surgeon, who had assured us that unofficially he could tell it was a fibroadenoma, but just needed pathology to concur, was almost as shocked as we were by the revelation that not only was it malignant, but highly aggressive. He never once referred to my diagnosis as "Triple Negative" despite it being on the first page of the pathology report. I found that out after I had researched and told my husband of my relief that it wasn't Triple Negative, only to get my records before my Moffitt visit, and reading on the first page: "Invasive Ductal Carcinoma, Triple Negative Breast Cancer". My Ocala surgeon had also set me up with a local MO (who has yet to this day to call me, despite us leaving messages). When we called the MO, his nurse said he had received all of my records and had reviewed them and felt I wouldn't need chemotherapy. Well, if he were any kind of MO worth his weight, he would know that the NCCN treatment guidelines state that the size of my tumor coupled with the hormone receptor-negative/HER2-negative characteristics, indicate that chemotherapy be administered. By going to Moffitt, my case was given to the breast medical oncologist who specializes in breast cancer in the under 40 population. She could recite the treatment guidelines for most breast cancer patients without batting an eye. This is what I mean by going to a center where they specialize in not only cancer, but breast cancer, and then drill down even further to specialize in the unique characteristics of your particular case.

With your age being 41, you're young to be diagnosed. That's a tough pill to swallow. I was 34, and there are women on these boards in their early 20s. Breast cancer in young women is typically more aggressive and is much more likely to be Triple Negative (which significantly increases chances of a harmful mutation being the cause) or hormone negative, but HER2 positive. Or if it is ER/PR+, HER2-, it's likely to be Luminal B, and thus more aggressive than a similar diagnosis in a post-menopausal woman who is 20 years older.

Even if you decide to be treated at Shands or in your local community, I strongly suggest you go to Moffitt and get their recommendations and then find a local doctor who is on board with implementing them. As for my personal opinion, I think you should go to Moffitt and continue to be treated there for every appointment. The hospital is large, but very friendly, and the Women's Center is very easy to get to. To me, there's just no contest. Moffitt is experienced in this, leverage their experience. My Ocala surgeon, who is a "breast specialist" does mostly other types of surgeries. By contrast, Dr. Kiluk, my surgeon at Moffitt, has only performed breast cancer related surgeries for about the last 8 or 9 years.

I'm sorry again to have left you hanging. I'll check back on here tomorrow. I hope you're doing ok. Remember, it does get easier—I know it doesn't seem that way now, but it does. Do you know the hormone receptor and HER2 status of your tumor? What about the grade?

Best wishes for a peaceful day.

Your attitude sounds as positive as can be! Just remember We have cancer, it doesn't have us!!!!

hi @spookiesmom,

I was just diagnosed Thursday. I am in Clearwater. Who was your surgeon?

(Sorry if this is a duplicate post but I got an error when I tried before and I don't think it posted).

Thanks!

thanks. I have an appointment with his partner Dr. Allen next Friday. If I wanted him, I would have had to wait a month. I figure he would not be in practice with her if he did not think she was great