Just made the hardest phone call
I just had to call my children and let them know......tears are flowing. So a little history....Thirteen almost fourteen years after my first breast cancer, I have been diagnosed with a recurrence .....this time HER+ I am very scared this time and my anxiety is through the roof. I live in Destin FL and have spent the last eleven days trying to see a surgeon trying to get all of my lab results and trying to hold it together. I have battled each and every day, as the surgeons and doctors down here are on island time all the time. This lead me to research further and I have decided to go to the Moffitt Cancer center in Tampa...anyone been there?
Comments
-
Her+ what about herceptin? Don't despair there are drugs to knock it out.
-
I am sorry, HER2+ I have been reading here and it helps to read about all of the success! I know that once I finally get a Doctor's appointment and a treatment plan I will feel better. The waiting is torture and my first appointment is not until next week. The Histology analysis was a score of 3+ and 80 per cent. I do not know a lot about HER2+ but I think that is pretty aggressive. Our decision to travel 6.5 hours to Moffitt was partially based on this.
-
Hi!
My cancer was HER2+ as well, and it's very treatable these days. Thanks to Herceptin and Perjeta (targeted therapies just for HER2+), HER2+ cancer now has similar survival rates/recurrence rates as other forms of breast cancer. It think that the most challenging part of being HER2+ is the length of the treatment. For example, not only did I spend five months getting chemo, but I then did Herceptin (every three weeks) for a year. It's definitely a marathon, not a sprint, but it's doable if you just take it one appointment at a time. ((Hugs)) and best wishes to you!
-
If the pathology changed then isn't it a new primary??? HER2+ is good news these days compared to say, triple negative.
-
cindyanne - I agree with barbe1958 that you may be dealing with a new primary, not a recurrence. Also, I am wondering if you would be willing to make the drive from Destin to Tampa every three weeks for a full year for the necessary Her2+ treatment, it is a long haul. Have you considered going to Mayo in Jacksonville? It is a couple of hours closer than Tampa. And although I am not familiar with the details of your new diagnosis beyond your Her2 status, you might also consider Florida Cancer Specialists in Tallahassee, at least for the medical oncology part of your treatment.
-
Yes I know it is a long haul but I am willing to make it. I say that now but of course we will see once reality has set in.
-
Cindyanne - I'm so sorry! I can't imagine facing cancer again. I don't know much about The Moffitt Center. However, my surgeon moved from U of Penn to the Moffett Center last year. He is wonderful surgeon and well respected. His name is Dr. Brian Czerniecki. I don't know if he is focusing more on research now, but if he is still practicing surgery I highly recommend him. While he takes a little getting used to, I found him to be very compassionate and knowledgeable. Good luck!
-
Janetanned,
Thank you for the information. We moved to Destin from Pittsburgh, so the slow reaction to everything is frustrating for us. In Pittsburgh my doctors were great and coordinated everything.....quickly. I think Moffitt will be a good choice.
-
Dr. Czerniecki did my bilateral prophylactic mastectomy at UPenn. He is rather blunt, but I really don't care about bedside manner as long as the doctor is skilled. I think my outcome was fair to poor. He did a procedure prior to the mastectomy to increase the survival of the nipple (I did nipple sparing). He never biopsied the nipple (they did for my sister who had the same surgery at Sloan Kettering). He said it wasn't necessary. Even though he did a nipple delay procedure to increase the chances of the nipple surviving, I still had some necrosis and lost some pigment in one nipple. I wish now that I had stuck with Sloan Kettering. I was scheduled there, but backed out and decided to go with the docs at UPenn. Big mistake. I think my DIEP flap reconstruction was poorly done and the PS lied to me.
I would rate the quality of my surgery as sloppy.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team