Breast Cancer: Stage 3 & 4 Community
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Avatar universal

Stage IV after 9 years double mastectomy for DCIS.

In 1999 I had a double mastectomy because of DCIS was found in my left breast. I ended up having DCIS in my right breast also. Now 9 years later I started having pain – like a pinch nerve –under my left armpit. I went to the surgeon and the needle biopsy showed that it was atypical ductal cells. During surgery (July 08) they discovered that I had a large mass that turned out to be cancer. They would not remove it because it was on a nerve and they were worried that I would become paralysis in the arm.

After PET and CAT – stage IV –breast cancer in liver (minor) and in the pelvic. Only other signs were fatigue and some aches and pain. Nothing you wouldn’t expect to be un-normal for a single mom with a 12 year old and working in a high stress job and commuting 120 miles a day.

My cancer is ER/PR + and HER2 -. My ER was over 90%. The doctor started me on Zometa (4mg) by infusion every 3 weeks and Tamoxifen (20mg) daily. I am 39 with a history in the family. My mom was first diagnose at 32 and passed away at 64.  My genetic testing was negative for BRCA1 and BRCA 2 but an unknown mutation was found. Some hip pain after starting Zometa but that is under control for now. Still get minor aches in hip and pelvic after sitting or standing for long times.  

My Tumor marker were 667 in July – went down 44 points in the first month on Tamoxifen and they went back up to 670 last week. I am scheduled to go for a hysterectomy in Nov with removal of overaries and tubes.

My first question is – am I on the right treatment plan? Should I being doing radiation on the large mass to shrink and remove it? What about Chemo? My other medical condition are high blood pressure (found out during testing and now on meds) and overweight (working on getting this by eating mostly veggies now)

I also have been taking calcium 500 mg and a daily vitamin for the last 3 years.

My second question would be diet – what should I avoid beside soy?

2 Responses
Avatar universal

This is really an unusual scenario considering that you only had DCIS before.  Indeed cancer never fails to surprise us and sneak past even the best medical care.

The fact that your tumor is ER positive, then I believe that the initial approach of hormonal treatment is reasonable and sound.  The removal of your ovaries would also cause favorable effects as you would lessen significantly your circulating amounts of estrogen.  Other hormonal treatments that you can ask your doctor while waiting for the ovary removal would be drugs like leuprolide or goserelin, as this would also suppress ovarian production of estrogens.

If all hormonal drugs fail, then chemotherapy is indeed an option.  chemotherapy may also be necessary if there is critical tumor bulk such as that causing so much pain, or compressing vital structures or organs.  Since you have a stage IV systemic disease, then i believe that radiation should only be given for critical tumors causing severe pain or bone deformities, or likewise compressing other organs.

Regarding diet, I believe there has been no standard recommendations save for avoidance of too much animal fat.

Avatar universal
Thank you for such a fast response! So far the main tumor isn't causing as much pain as it was - so I am hopeful that it is shrinking. And yes - my doctors are all stumped by my diagnoses. The only thing they can think of is that I had an invasive cell 9 years ago and it was hidden. I am a mystery to them – even my DCIS presented in a very stage way – no tumor – just a cigar shape of what appeared to be fatty breast cells. They are still talking about it 9 years later.

My hope is that it took 9 years to show signs – so it is slow growing and will continue to do so.

My last question is the tumor makers – is 670 high, normal, or low for stage IV?
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