I was misdiagnosed after my first right breast lumpectomy, Sept2009, which showed extensive DCIS over 8cm. I was told that re-excision and radiation would be enough to cure me. I seeked 2 more opinions from oncologists and they suggested a mastectomy on the right since no cancer appeared anywhere else on mammograms and MRI. I decided on a bilateral mastectomies since there has been a cyst like lump for over a year on my left side. I had the bilateral mastectomies, bilateral expanders and bilateral sentinel lymph node disection on Feb2010. Pathology report revealed: 6cm invasive lobular carcinoma on left breast negative sentinel lymph node, 1.1 cm invasive ductal carcinoma on right breast with 1 lymph node positive .53cm metastatic carcinoma. No other invasion identified on both breasts. I am terrified. Can anyone tell me what my chances of survival are and the best treatment options.
Star-light, it sounds like your instinct to go with the double mastectomy served you well. Although it is not unusual for women to have more than one kind of breast cancer, it does make it a little harder to find survival statistics. Only your oncologist will be able to tell you how many women with the specific features of your cancer survive. Two important pieces of information he or she will use are the estrogen receptor (ER) status and the Her2 status. If the tumor is ER positive, the doctors will be able to treat your tumor with any of several hormonal treatments such as Tamoxifen. Although Her2 positive tumors tend to be more aggressive than negative ones, a drug called Herceptin has had good results with Her2 positive tumors. Your treatment will probably include chemo, radiation, and maybe one or more of the drugs I just mentioned.
The most important thing you need to know about survival statistics is that they are a snapshot of what happened to women in a study more than five years ago because study stats are given as five-year survival rates. So they cannot reflect the newest cancer treatments, and they cannot predict what will happen to you. For example I had Stage IIIB inflammatory breast cancer with 16 positive lymph nodes. I was on the wrong side of every prognostic factor. I knew that the five-year survival rate for my type of cancer was about 40%. Fortunately I did not know that the ten-year survival rate was 25%. I was discouraged enough about the 40% number.
But here I am 12 years later--well and doing fine. Talk to your doctor about the statistics to help you make treatment decisions, but don't let them make you fearful. As for your next step, I'd suggest choosing the oncologist you liked best out of the original ones you saw because they will already know you and the details of your case. If you have not yet seen an oncologist at a Comprehensive Cancer Center, it would be a good idea to consider going to one either for your treatment or for a consultation if you don't live near one.
Thank you Phyllis,
I think both my tumors are ER and PR positive and Her2 is still unknown. I have to find out results of CT scan and bone scan and will be as aggressive as posssible with my treatment. I am also going to ask for a bilateral lymph node removal to increase my chances.
I really appreaciate your response.
Thank you,
star-light
I hesitate to try to influence you, but please think hard before going for more aggressive treatment than you really need. Removing multiple lymph nodes on each side puts you at great risk for lymphedema, which can be a lifelong challenge and really impair you physically. And lymphedema can lead to cellulitis, which itself is life-threatening. I hope you have the chance to arm yourself with all the stats about YOUR particular case (courtesy of your oncologist) before you finalize treatment decisions. It's VERY tempting, when you're in the first frightening stages of cancer diagnosis and treatment, to say, "I don't care what it takes, I'm going to be as aggressive as I can in fighting this." What few of us realize is the potential for long-term - lifetime - lasting effects from these aggressive treatments. And you say, "Well, it's worth it, to save my life." But... if your chance of recurrence is 10%, and you lower it to 8% via maximum treatments - is it REALLY worth a lifetime of discomfort - when your chance of living a long life was 90% anyway, without all the lasting effects? Something to consider... PJH
Star-light, keep in mind that having two tumors doesn't necessarily mean that your cancer is more aggressive than having just one. The doctors will evaluate each one on its own and will probably plan your treatment based on their combined characteristics. I know it's hard to wait before you have all the information. As PJ says, it's important to find the right balance between killing the cancer and avoiding long-term side effects. Your oncologist will guide you in making those decisions.