John Hopkins, Sibley and JHU Rare Breast Cancer

[Anonymous]

I have a rare breast cancer - invasive, papillary breast cancer – less than one in 100 incidence. The good news is this type of cancer is supposedly less aggressive, and I caught it early. But there are some aspects of my case that make me wonder if I would be better off with someone who has more experience this type of cancer. I noticed that Johns Hopkins University has a Rare Breast Cancer Center.

Is there anyone out there that can share their experiences either with this JHU/Rare Breast Cancer Center or with JHU breast cancer treatment (oncology and radiology, I have a surgeon) in Baltimore locations or at Sibley or Suburban?

TIA.

[Anonymous]

Yikes. My friend had this and was treated at Sibley and JHU. Her outcome was not good. She had it treated, went into remission for 2 years, then came back during a routine scan that it had spread to her liver and bones. 10 months more treatment; out of options, died 4 weeks later. She was young as well, in her early 50s. Hope you have a better outcome.

[Anonymous]

Insensitive post, PP.

[Anonymous]

Damn 14:48. Pls stay away from here! Sorry you are having a bad day.

OP no experience but sending you positive healing thoughts! You got this! Catching it early is so huge. Best best wishes.

[Anonymous]

FWIW just because Sibley is in the JH system does not mean the experts at JH will be treating you at Sibley.

[Anonymous]

I have a different rare breast cancer. Another local person I know with my same diagnosis did not have a good experience at Hopkins Rare Breast Cancer Center. She then went to MSK’s program and had a very positive, hopeful experience. They determined a protocol and another oncologist managed care here. There is a first line protocol for my cancer, so I did that treatment here and will go to MSK if I have a recurrence.

That being said, there are a lot of oncologists listed for that program at Hopkins including a few at Sibley who are excellent. If there is a standard protocol, they will likely do that wherever you go. Where there may be differences is in monitoring after treatment and in second line treatments if there is a recurrence.

[Anonymous]

My good friend is alive today because she went to Hopkins and they put her in the late stages of a clinical trial which is now the standard of care for her type of breast cancer. That treatment was not being offered at the hospital where she first went. She has nothing but good things to say about her care there. She has been cancer free for almost seven years now.

[Anonymous]

You may want to also look on the forums on breastcancer.org, or the r/breastcancer subreddit.

[Anonymous]

My sister-in-law had a relatively rare kind of breast cancer (triple negative) at a young-ish age and got her treatment in Boston at Dana Farber. She is cancer-free today after five years!

[Anonymous]

You want a NCI-certified clinical cancer center (Hopkins is one ).

People at teaching hospitals are more likely to do and keep up with research.

The first treatment is the most important, so you should definitely try to find a doctor who has considerable experience in your type of cancer.

At a minimum, get a second opinion on your treatment plan from a specialist.
Best of luck to you.

[Anonymous]

Choose a comprehensive cancer center:

https://www.cancer.gov/research/infrastructure/cancer-centers

[Anonymous]

Anonymous wrote:Yikes. My friend had this and was treated at Sibley and JHU. Her outcome was not good. She had it treated, went into remission for 2 years, then came back during a routine scan that it had spread to her liver and bones. 10 months more treatment; out of options, died 4 weeks later. She was young as well, in her early 50s. Hope you have a better outcome.

This is your favorite story; you tell it in every thread about BC, and you enjoy it immensely. Rather stilted.

[Anonymous]

Anonymous wrote:My sister-in-law had a relatively rare kind of breast cancer (triple negative) at a young-ish age and got her treatment in Boston at Dana Farber. She is cancer-free today after five years!

I have this TNBC and I am part of a new trial with immunotherapy. Responding very well to the treatment. I pray, hope and strive to be cancer-free for the rest of my life.

[Anonymous]

I had papillary carcinoma found in 2023. It was treated successfully with lumpectomy, radiation, and tamoxifen. I worked with Inova and Virginia Cancer Specialists.
Good luck.

[Anonymous]

I did surgery and oncology at Hopkins (not a rare breast cancer though) and was very happy with my care. Did radiation closer to home. Best of luck to you, you can always get a second opinion if time permits.