HER2neu positive 3+

HattieHouston

I have the above named tumor and they have not been able to find a primary site. I found a swollen node under my right arm and was diagnosed with invasive ductal cell based on the cells found in that biopsy. Many attempts and biopsies of various spots in my right breast using diagnostic x-ray and MRI mammograms, CT scans, bone scans, etc. failed to reveal a primary site. I have two weeks left of targeted therapy with taxol, Herceptin and Perjeta. Initially, I was told I would have surgery after this treatment but at that time they still expected to find the primary site in the breast. I am unsure what to expect now that it was never found. I am 74 years old and have had my therapy paused for 3 weeks due to edema and having to repeat ECHO. Last week I resumed my targeted treatment. Tomorrow I take my next to last infusion. The edema is still moderate to severe and the diuretics don't seem to make much difference. Anyone here have any experience similar to mine? Any information I would appreciate.

BarredOwl

Hi HattieHouston:

Regarding the inability to locate a primary tumor in the breast, please inquire about next steps with your treatment team. If there is a "tumor board" at your current treatment facility (a multidisciplinary panel that considers cases as a group), you may wish to request they consider your case.

Optionally or in addition, you may wish to seek a second opinion review regarding the current evaluation, including a review of all imaging (e.g., mammograms, ultrasounds, MRIs), pathology slides (sent overnight), related reports and medical advice. Because this situation is not common, it is a more specialized question and you may wish to look for a university or teaching hospital with a comprehensive breast center, such as an NCI-designated cancer center. Even if you need to travel a bit, it may be worth it to tap into their expertise.

NCI-deisgnated cancer centers: https://www.cancer.gov/research/nci-role/cancer-centers/find

There is more information about the second opinion process on the main site here. There are several sections (see menu at upper left). The second opinion place can provide you with guidance about how to collect/send your materials (imaging, pathology slides, related reports, medical records). After obtaining a second opinion, you can still elect to seek treatment locally.

Second opinions: http://www.breastcancer.org/treatment/second_opinion/why

There is a thread here for those in whom a primary was never located: Occult Primary with Lymph Node Metastases:

https://community.breastcancer.org/forum/137/topics/799403?page=4#post_4806374

I don't know anything about your other question regarding edema, but hopefully someone with experience will come along.

Best,

BarredOwl

HattieHouston

Thank you barred owl. I read the whole article as well as all the postings on the site. I live in Houston, TX near MD Anderson Cancer Center and Houston Methodist Hospital. I began with Methodist and got my second opinion from MD Anderson. My oncologist worked on the team that developed and tested the drug Perjeta. I have felt in good hands so far. It feels good to read that there are others with the same situation, however. I am somewhat counting on the idea that if the cancer is too small to show on the imaging, then it is probably small enough to kill easily with the neoadjuvant treatments I am receiving. My cancer tested as very aggressive which really puzzles me. If it is so aggressive, where did it go? Why is it not still there conquering territory? Silly, I know. Thanks for your input. I really appreciate it. Hope you are doing well with your own health.

BarredOwl

Hi HattieHouston:

It is very nice to have MD Anderson in the neighborhood! Tomorrow will be 3 years from my surgery.

Sending good wishes your way as you move forward.

BarredOwl

HattieHouston

Thanks for your support. I have been really fortunate so far. I wish that for all my sisters in the "pink" community. I hope you continue with excellent health. One day at a time seems to work for me. Im just glad to be alive and living in a time when good treatment is available.

Momandwife36

Hey there Hattie. I'm in a very similar situation to you, except I'm 36 with very aggressive cancer. The cancer in my lymph nodes also didn't show up on ultrasound or Mri. I know it's pretty scary, but I hope all goes well for you.