We are 228,650 members in 84 forums discussing 159,786 topics.

Help with Abbreviations

Topic: Where is the best breast cancer center in US?

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: May 22, 2020 11:01AM

cjmm2020 wrote:

My partner just had a chest x-ray and CT scan this week revealing masses in her lungs. She had DCIS lumpectomy in 2007 and Stage 2 HER2+ and mastectomy in 2017. We live in Denver suburbs and not overly impressed with her treatment teams and experience here. This doesn't look good... I want to make sure we go anywhere to give her the best chance at beating this. What are your thoughts or recommendations?

Log in to post a reply

Page 1 of 1 (17 results)

Posts 1 - 17 (17 total)

Log in to post a reply

May 22, 2020 11:33AM berries wrote:

I am so sorry to hear about your partner. There are many options for centers, but the important thing is to go to an NCI-designated system. She will receive access to the most clinical trials and I do believe receive the best care with the most knowledgeable staff. Here is a list: https://www.cancer.gov/research/infrastructure/can...

Did they do a biopsy on the lung masses? Make sure they do as the receptors may have changed, which will inform her treatment.

University of Colorado Cancer Center
Aurora, Colorado
Comprehensive Cancer Center

I hope this helps and she will get through this! She is lucky to have a partner like you.

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

May 22, 2020 11:46AM cjmm2020 wrote:

Thank you very much. No biopsy yet, just got the results of CT scan and trying to get her in for oncologist visit. Don't even know if it might be a new primary cancer, but her history, and possible mass also in liver (from scan) sadly seem to point in the wrong direction. We actually have an appointment at the UCHealth Breast Center next week. Hate this waiting part when everything seems so slow. Thanks for the list, I will check it out. Do you work at UC Cancer Center? Do you recommend it? I just feel like we should go to Dana Farber or Mayo Clinic or somewhere to make sure we do everything we can. Thanks again.

Log in to post a reply

May 22, 2020 11:51AM berries wrote:

I don't work in healthcare, but my husband is a physician. Always always recommend an NCI-designated center. There are only a few of them around the country. Glad you have an appointment at UC Health.

This waiting part is the absolute worst part of it. I remember it well and I also remember how many people told me that at first. We lived in California (only for a few weeks) at first when I was diagnosed, then moved to Chicago to get treated here because we thought being around family was most important. I totally understand the pain and fear you are going through, but stick close to family and somewhere familiar.

See what they say at her appointment next week, but l also come prepared with questions and a second-opinion lined up. You can make an appointment at Dana Farber or Mayo or even Johns Hopkins as a back-up. Second opinions are important!

Do you know if she was hormone positive in 2007/2017? There are many treatment options available and HER2+ immunotherapy options as well!

Please keep us posted. Keeping you both in my heart and sending you strength.

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

May 22, 2020 12:00PM cjmm2020 wrote:

Thank you again :). She was hormone positive in 2007 with the DCIS lumpectomy and then HR negative but HER2+ in the other breast in 2017. I have heard of the newly approved targeted therapy for HER2+ though I'm so afraid of the diarrhea side effects - she had a hard time last round. I know we need to wait and see and take one step at a time, but she is really scared and I need her to believe we are leaving no stone unturned this time. I haven't even mentioned the possible liver mass that her GP told me about. Thanks for being a sounding board - so appreciated.

Log in to post a reply

May 22, 2020 01:10PM BevJen wrote:

I'd like to offer two other hospitals to put into the mix -- MD Anderson in Houston and Northwestern University Hospital in Chicago. What you might want to do for a consult with all of this travel craziness is to reach out to a particular doctor or group at a given hospital and see if they are doing video consults -- that way, you could send her records and possibly even copies of her scans (they should give you the slides on disk for free) to a particular doctor.

MDAnderson is generally rated as the best cancer hospital in the world. U.S. News also ranks best cancer hospitals in the US, and MDA is at the top of their list. Dana Farber, Hopkins, Northwestern, Mayo Clinic are all on that list as well.

To find a particular doctor to seek out an opinion from, try googling the specifics of her cancer (e.g., metastatic estrogen positive cancer) and you should come up with some articles about it. The co-authors are usually very solid people with whom to have a second opinion.

Best of luck with this.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
Log in to post a reply

May 22, 2020 01:19PM berries wrote:

I agree with BevJen. I am being treated at Northwestern in Chicago and it is a VERY comprehensive system. I have a therapist who talks to my oncologist and an oncologist who meets regularly with my radiation oncologist, who knows my history down to what type of physician my husband is. They are wonderful.

Best of luck and please let us know if you have any questions. Soon, she will get a treatment plan in place and everything will start to fall into place.

We are in your corner. Sending you love and light.

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

May 22, 2020 02:55PM BevJen wrote:

Another plus for Northwestern -- happy to hear that Berries is in their corner. I have consulted with two docs there -- Dr. Lewandoski for local liver treatment and recently, Dr. Cristofanilli as a second opinion on possible progression and treatment change. I wish I could move to Chicago -- I like them all that much, and I've never set foot in the hospital!!!

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
Log in to post a reply

May 22, 2020 03:09PM FarAwayToo wrote:

I'm sorry to see you here, but wanted to offer my experience on treating early BC at UC Health Breast Clinic in Aurora.

If your partner's cancer is HER2+ I highly recommend getting an appointment with Dr Borges there - she was/is my oncologist, and she has extensive research on HER2+ specifically.

In any case, other oncologists are also great, and they consult each other, as far as I know.

It won't hurt to align one or more second opinion consults anyway, and you received great suggestions above.

I hope your appointment next week at the breast clinic proves helpful.


Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/22/2018 Zoladex (goserelin) Surgery 2/27/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/4/2018 Femara (letrozole) Surgery 8/20/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
Log in to post a reply

May 22, 2020 03:29PM bcincolorado wrote:

I am in Colorado Springs and in the University system here and they have wonderful care down here I know. My husband had transplant at University and we totally trust them and he had the best of care for many years (his was in 2005 and still doing ok and they follow him all the time). Best wishes.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
Log in to post a reply

May 22, 2020 03:49PM berries wrote:

Keep us posted cjmm2020 I will be thinking of you both! I know it is not easy for the caregiver just as much as it isn't for the patient, so if you need help, too, find someone to talk to. She is lucky to have you.

Be well. x

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

May 22, 2020 04:02PM farmerlucy wrote:

I'm sorry to hear your partner is dealing with this again. I long ago decided I would go to an NIH hospital if I have to deal with this again. And you can bet your bottom dollar I’ll stick with these boards. My docs don’t have the time to research advances,like the 100K + folks from around the world that come to this site, do. Best wishes.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

May 22, 2020 05:20PM cjmm2020 wrote:

Thank you all so so much for your support and information. This is exactly what I was looking for and exactly what I needed today. I feel much better with facing our UC Health appointment and knowing there are options for remote consultations at some of the big names in breast cancer research and treatment. I wish we weren't quite so far away (more than a day's drive) during these crazy pandemic travel times, but we will take things as they come and figure out what's best. I feel so fortunate to have you all behind us. Thank you. I wish you all the very best in your journeys too.

Log in to post a reply

May 22, 2020 05:51PM Beesy_The_Other_One wrote:

cjmm2020, I live in Houston, am treated at MD Anderson and recommend it highly. I got to know a young lady here on the BCO who is 30 years old, was pregnant when we met and has TNBC. When Coronavirus started sweeping the nation, I can't say MD Anderson dealt with her very well, because they literally could not deal with a video conference and just canceled two appointments on her, and now she cannot travel with an infant and a compromised immune system. A friend who works at MD Anderson and knows about this young lady wanting to get a second opinion wrote me just today saying that "virtual visits are ramping up and will be a standard of care going forward." Honestly, it shouldn't have taken a pandemic to make this a possibility for men and women with cancer.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
Log in to post a reply

May 22, 2020 06:29PM - edited May 22, 2020 06:36PM by ShetlandPony

There are good recommendations above. Really, the NCCN centers are already the best, so any of them is a great choice. You might pick the one closest to you, as you have done with UC, for treatment. Then if you want second opinion, choose another NCCN center as recommended above, and consult remotely. You can easily find the US News and World Report hospital rankings online.

Search these boards for the ones you are considering by name. I recall seeing one place that is supposed to be great but where several patients felt like they were not really cared for but treated in assembly line fashion.

It surprises me a little that the GP would talk to you about the liver mass and not to your partner who is the patient.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

May 22, 2020 07:00PM dizzywombat wrote:

I’ll also recommend MD Anderson. I started with them as a second opinion and was so impressed with how comprehensive and thorough they were that they’re now my primary team. I’m not in Houston, and haven’t had any issues with telemed visits during COVID, so hopefully they’re figuring that out for new patients as well. It’s been nice to not have to drive in for office visits when I can just do them virtually

Wishing you and your partner the best during this!

Dx 10/22/2019, ILC, Right, 3cm, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 11/21/2019 AC + T (Taxol) Surgery 4/21/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/24/2020 Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

May 23, 2020 04:13PM buttonsmachine wrote:

I also recommend finding an NCI designated, comprehensive cancer center. After I transferred to one my care became SO much better. I think the difference is night and day, especially for those of us with more complex cases. Hope you find a good team.

Initial diagnosis at 32 years old. Chest wall resection 18 months later to remove skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2-
Log in to post a reply

May 26, 2020 02:31PM cjmm2020 wrote:

We live in CO and when I called MD Anderson, they told me they had affiliate/satellite clinics in Loveland and Greeley. These do not show up as NCI-designated. What are your thoughts on level of care at a Banner MD Anderson center in CO versus getting ourselves to Houston?

Page 1 of 1 (17 results)