How to monitor for reoccurring BC after double mastectomy?

Hi again @jgallagher04921 -- I just responded to another one of your posts and after reading this one I have to wonder who is providing your treatment. A second opinion might be good. Do you have a cancer center or teaching facility near you?

I had a double mastectomy in 2013 for stage 1 BC, BRCA2+. I was ill advised not to bother with hormone blocking therapy since we caught it so early and I had the mastectomy. 7 years later my BC was back in my chest. I felt the lump myself, but no other symptoms including not painful. My current oncologist doesn't agree with the assessment of my original team from 2013. Too bad I didn't get a second opinion.

I had both ultrasounds and an MRI the first year after my mastectomy and then just an ultrasound annually after that. I also had frequent check-ups with the surgeon the first couple years, then semi-annual to 5 years, and then annually after 5 years. Fortunately, my annual ultrasound was scheduled for 2 days after I found the lump so the recurrent breast cancer was diagnosed right away and treatment followed. Although, it's considered stage 4, it could have been much more advanced if I had gone longer without treatment. For MBC, I had surgery, then radiation and now have been on MBC meds for 2+ years and will continue so long as they work.

I would be very concerned if I were hearing everything you are hearing. Zebra

My oncologist basically discharged me after 5 years on letrozole. She says she is my oncologist for life but I have no appointments, no imaging, no blood tests. I have contacted her with hip pain twice and she refers me to PCP for x-rays. She is a top-rated doc. I keep asking on forums how people know they have a recurrence/spread and generally it seems to be through imaging for another problem!

I think that’s the way they usually find something, when they are looking for something else…it’s a rather frightening thought because most diseases don’t let you know they’re in your body until you get symptoms and then it’s sometimes not soon enough.

@frouke @windyshores
It's funny you talk about looking for one problem and finding another. I always felt like my brothers died young (48, 59) because they were too healthy, slender and fit. People can't understand why I say that. They never went to the doctor so no xrays for pre-op or bronchitis, no scans, etc. that may have caught their cancer earlier. Instead they were both caught late stage when severe symptoms popped up.

I on the other hand was always the one with a collection of medical issues since I was a child so I was always being scanned or tested for one thing or another and then there are always incidental findings. At one point, my oldest brother jokingly suggested I should look into a body transplant (I wish). My familiarity with medical offices also kept me doing routine screenings and caught things early. So ultimately, at 64, I have outlived both of my older brothers by far even though I was sure I'd be the first to go. Ironic.

You’re just having what’s called “survivors guilt “ and of course it’s okay to feel like this within reason. I sometimes feel so fortunate to be alive in this day and age where they are making phenomenal progress in the medical field as well as medicine…it amazes me how much research is going on all the time and with this comes some break throughs, alas I am also sad that we still have lots to learn but I suppose it all goes under research. I also think about how hard it was for our families before us when there was so little to offer a person who was I’ll, what happened to your brothers is a heartbreak…my doctor told me that he has patients that came in complaining of an ailment and when asked how long, they say oh a few years, this too leads to poor results at the end of the day.

I suggest getting a second opinion or finding a new oncologist. I know that patients who've had double mastectomies done by the surgeon who did my lumpectomy are screened semi-annually (mammogram, ultrasound and physical exam by follow-up oncologist) for at least the first 2 - 5 years. I go to Cleveland Clinic so that might just be their policy.

But breast cancer clearly can return even after mastectomies. It's not common but it's also not unknown.

I am 65 years past my Breast Cancer removal. At that time, I was seen for about one year and nothing after that. Most of the time, cancers have been found early by the patient. Monthly, manual checking while in the shower is the first line of defense. I do not say it is the end all. Cancer is "sneaky", and you have to stay alerrt to anything that seems different. "If it looks like a dog and it barks like a dog, it probably is a dog", but we do not shoot dogs because they bark. We pay atteention, we ask for help (our doctor) and remember we know our body better than anyone else. Never be afraid to ask your doctor, if something just doesn't seem right. Better to maybe look a little foolish, then dead. Your general paractioner may be your best friend. The Oncologist, wants to see patients who are probably already diagnosed.
If you are 5 years with no recurrence the Scale has tipped in the right direction. Time to enjoy those extra years you have been given. Smile, kiss your husband, laugh as often as you can, and remember you will not leave this planet one day earlier than God Has Decided is your time.
Gina5009

@gina5009 I don't have breasts so not much to check in the shower but yeah, I check some. Risk goes up as the years go by for hormonal cancers. It is a misconception that it goes down.

I don't have a husband anymore.

I think we all learn to keep cancer on the back burner but not so far back that we don't notice certain changes. I don't mind at all that my oncologist doesn't see me. I was confirming that that is normal practice and sorry if that comes off as complaining.

That said, the fact remains that most people seem to find metastasis through imaging for something else. That is my impression anyway.

Like you I no longer have breasts, but I still feel most of my cheest and arm pits for unual lumps. I found a lump in my thigh, just above the knee. I was told it was a fat pad and the doctor told me to stop worrying. It did not seem to grow very much, but it did seem to be firmly attached and it constantly worried me. I finally convinced my doctor to take it out. He said O.K. but we would do it in his office because it would not take much time. Three hours later, I was finally ready to go home. Local anesthetic only, and tissue to the Lab. I could tell by my doctors face this tissue was not what he expected. One week later, verdict was in DERMATOFIBROSARCOMA. A couple of years later, I had another lump on my right rib area. Everyone was more concerned and it had to be taken off in the hospital with prep for more surgery if it were cancerous. This time LIPOMA. Everyone had a big smile.
A few years ago a small reb pimple on my right collar bone. It was kind of ugly, and been around for a while. I was at the dermatologist, and asked if she could take it offl the chain on my locket was kind of bothering it. We took it off and sent it to the lab just as a precaution. Guess what SQUAMOUSCELL CARCINOMA. Who would have thought. Who found these cancers? How were they found? I fully believe in MRI'S and X-RAYS, but as I said, Cancer is sneaky, and any type of observation is good observation. If something is worrying you GET IT OFF, THROW IT AWAY.
Gina5009

You cannot feel bone cancer or cancer of internal organs in the way you describe. Lung, kidney, brain. Eventually there are symptoms but I assume things are pretty far gone by that time. I wish there was a way to catch things early and have hope for liquid biopsies being developed, and perhaps blood tests.

I had an autoimmune reaction to my cancer, that made my eye movements go horribly awry, so if that happens again I will get checked!