Thanks, every bite of encouragement is great.

I did not go to Moffitt for Breast Cancer but I was treated there for Stage IV Colon Cancer with metastasis to the liver, both lobes 3 tumors. I lived in NC when I had BC and went to a small cancer center. I transferred to another small cancer center in FL when we moved back here about half way through my treatment. When my oncologist discovered the colon cancer and that it was already Stage IV, she referred me to Moffitt. The surgeons at Moffitt are very good at what they do. I was told that there were not many in the U.S. who would have performed the surgery that I had done. We live about 2 hours from Moffitt so I do my chemo at my local cancer center where I already had a relationship.

Take into consideration the distance you have to travel. Yes, that is considering convenience, but I can assure you, it is a factor. After being released from the hospital, it involved traveling for 2 hours, going to the lab to get blood drawn, if a CT scan, going and having my port accessed, then going through the scan, then waiting for at least an hour and a half to see the doctor (the wait was so that the scan could be seen while I was seeing the doctor). We were usually there for 4 or 5 hours and then a 2 hour drive home. I had some major complications and it was grueling. I am still under the care of a surgeon but my oncologist found one closer to home. I simply could not continue traveling that distance. If you require a test where you need to fast, or do a cleanse, the travel can be a challenge. If you do require a hospital stay, it can be complicated for family to work out how to come and see you. There are motels that give you a break if you are a Moffitt patient, but that is not always an option for everyone. My husband is disabled and was only able to come see me a few times over my 12 day hospital stay. As I said, being close to your doctors and/or treatment center is an important factor and should be considered.

My inability to handle the traveling was my problem, certainly not Moffitt's, however I would not go back there unless my oncologist really pushed for it. There were a number of things that I was not happy with, but they have a very good reputation and some excellent doctors.

As for breast cancer treatment, I found that the chemo was much harder than what I am doing now for colon cancer. I was sicker for longer and felt worse during chemo. I was Her2+ so I had to have Herceptin, which meant weekly infusions for 4 months + every 21 days of very heavy chemo, and then every 21 days for another 8 months of just Herceptin. It makes sense that I would feel worse during that process. You have to remember that everyone is different. Some breeze right through chemo and radiation. Even those who breeze through it experience the sensation of a roller coaster ride. It is very over whelming, particularly at first.

A suggestion that I always make to new cancer patients is to take control of what you can. Get yourself a notebook and get it organized. Set up dividers - you may not know what the categories are yet, but you can have it ready. You may want to do a section for each doctor you deal with. Have blank paper in each section for notes. Write down questions for the doctor(s) and leave room for notes of their answers. Have a sturdy page in front and, at each office you visit, get a business card. Staple it to that first page. You will have every doctor and/or office and their contact info right there. Get a calendar and put it in your notebook to keep track of your appointments (this will help with your taxes too). Get a hole puncher and put in every bill or breakdown that you get after each office visit. Ask for copies of all tests and put them in your notebook (whatever works for you - by doctor, or all test results in one section). Set up one section with some of those dividers with pockets. You will find lots of handouts, flyers, etc. that you might want to keep to think about later (stores that help with prosthesis or wigs; counseling services, possibly disks of tests, whatever). The more organized you can make it, the more you will feel like you have some control over what is happening. It is very hard to accept that these people you do not know are doing all of these things to you, and you do not seem to have much say about it. That is particularly true if you have been fairly healthy up until now. Getting organized is a way to manage some of what is happening, plus, it really is a huge help if you change doctors and when you figure out your expenses for taxes.

I have now gone almost 5 years without a recurrence of breast cancer. My colon cancer was a totally separate issue. Hang in there. You can do this!

you have been thru hell and back. Glad to hear your breast cancer is under control. I wish you the best and with your strength, I think you can make it back to health. I hope I can handle this, but I keep praying and hoping for strength and spirit . My prays are for you, also. Keep strong.

@martid!! So good to hear from you again. What a wonderfully detailed account that both you and @travelgirl have provided to Elvandi. Thank you.

Elvandi, there are several people who share Martid's advice about keeping a binder. Check out this conversation among Connect members for more tips on how people use their binder and what they keep track of: http://mayocl.in/2nj1Q2J

Martid, did you see that we now have a Connect group dedicated to colorectal cancer too? I hope you'll pop over and say hi. http://mayocl.in/2meystS

You can do it. Not saying it will be easy, but you just put your head down and GO. I promise that you will be amazed at the wonderful people you will meet along the way.

you are right, I have meet wonderful supportive people, I feel that each one is an angel sent to me. My dx report states it is a small lump that has become invasive ductal carcinoma. Only during surgery will the doctor know if any thing spread. Hopeful it has not. I am interested in the targeted Proton radiation, for afterwards, since from what I have read, if it is in the left breast (which it is), regular radiation can damage the heart and lung. The Proton radiation targets only the cancer spot and little if no damage elsewhere in the body.
There is only one center in Jacksonville, Fl, that does this type of radiation.
What are your thoughts on all this ?
elvandi

what was the size of your lump ? I understand my lump is about 5/8" in size. wonder if I would need Chemo before surgery ?