dcis reoccurrance

Dear S4976,

I totally understand your concern. I was DCIS in situ, Mammosite radiation, and had a recurrence in the same area. I had DCIS in situ in 9/2006 with Mammosite radiation (internal). I was told I had a 4% chance of recurrence with Tamoxifen, 10% chance without Tamoxifen. I took tamoxifen religiously but wandered around scared about a recurrence. In 11/2011 I had another recurrence of DCIS in situ. They told me at that time that I had to have a bilateral mastectomy.

Your chances are very good that you will NOT have a recurrence. The 6 month digital mammography is a good plan (was also my plan) at least until a certain point at which your physician will be able to know if you have cleared the hurdle. Just remember, due to your diligence in 6 month mammography you are going to catch anything early, which will save your life! You can have peace in knowing every day that as long as you go in every 6 months, even if you have a recurrence you will probably catch it at stage 0-1.

The other thing to remember is that every one has potential cancer cells inside of them. Don't freak about that. Just think of it like an infection, or plaque from heart disease. In some of us, they are triggered. Your goal is to catch the cancer cells before they are destructive. You have already solved that problem with the 6 month digital mammograms!

In the meantime there are things you can do to help-- lifestyle measures that will help you avoid a recurrence. At least it is something that you can control. For example, exercise, nutrition, stress reduction, weight loss, and leading a toxin free life might help avoid recurrence--these are all things that I wish I had done more of to avoid my recurrence.

The other thing to know is that IF you were to wind up with a recurrence--and unfortunately there is a slim chance of that--you might want to prepare a little now for what you would want to do for reconstruction in the unlikely event that you have a recurrence. There are so many options today, and it takes so much education to find out the risks and benefits of all the different types of surgeries, new gummy bear implants and different options for flap and no-flap surgeries, not to mention picking a decent PS who caters only to breast cancer patients, knows how to handle infections and eagerly explains all possible reconstructive solutions (free flaps AND TEs). At least this way you will have a plan in place. I only mention this because I wish I had not been so pressured to make quick decisions about my BMX and PS for simultaneous reconstruction. I wound up picking the wrong PS and the wrong type of reconstruction surgery for my body weight. It wasn't until after both my flaps failed that someone told me that the failure rate for that particular flap was 50%, and they my BMI excluded me as a candidate. You could carefully interview 2-3 PS in your area, hopefully all of them could work with your oncology surgeon--the one that did your original lumpectomy.

You could also find infectious disease specialists to work with on your cellulitis in case you have a recurrence. Believe me, it is tough to get an appointment with ID docs as they are primarily hospital based and if you need to have surgery you will want to have prophylactic antibiotics before surgery due to your cellulitis and susceptibility of your bacteremia organism. Find one that goes to your hospital of choice (based on your PS and breast surgeon). Make sure you bring your medical records and susceptibility info from past infections to your first ID office visit and tell them your goal is to identify the best ID doc based on your risk of bacteremia/cellulitis. If it was a sticky or resistant organism, consider a quick course of colloidal silver and allimax between now and then to chase away the bad hospital acquired bacteria, and learn about how to avoid infection. Learn about manual lymph drainage through self massage to avoid infections, and the beneficial effects of rebounding. I also did a decolonization protocol with my whole family before my left TE was reinserted.

My last advice--take care and have faith because your are in the most fortunate group among BC survivors--you are currently cancer free with a very low chance of recurrence! It doesn't get better than that, and at this point you have complete control in charting a successful course for any future recurrence! You could probably do nothing at all and never get BC again. You get to choose every single day if you want to spend your time today preparing/planning for a future recurrence, fretting about a future recurrence, hugging and loving others, or enjoying the day ahead of you. Sort of like an investment portfolio--diversify and balance to get the right result for you. See, look how many options you have!!!

Sending smiles to you, S4976!