Help needed...2 recurrence...
Hi
I have recently been DX'd with 2nd recurrence ... now chest wall. This is my 7th tumour...3 x first time, 3 x in skin 2nd time and now isolated 6mm under arm. The problem is that this is incredibly rare as each time the tumour is still grade 1 and Er+ Pr+ and Her2-.
Has anyone out there been given chemo for grade 1 tumours? Onco type DX is apparently only used for primary and this tumour is too small for independent testing.
I am waiting to see onc and have also asked for 2nd opinion at the Marsden...but I'm trying to do as much research as I can as I am feeling like a time bomb!
Any advice or similar experience stories much appreciated...
Nikkix
Comments
-
Sorry to hear of your predicament, Nikki.I can't give you any help from a personal perspective, but I am sure others will come along who can.
As things are done differently in UK you might like to try asking the same questions on a UK forum - bcpals.org.uk is one where I am sure you will find people who have had a similar experience.You are definitely doing the right thing by going for a second opinion to the Marsden as they are really at the forefront of treatment.
Best wishes,
Sam
-
Nichola ~ Do they test for Her2 with FISH (the acronym name for the most sensitive Her2 test) in the UK? Looking at your stats, that's the one thing I might want double-checked. There have been some recent articles in the US about the importance of this (getting the Her2 dx right), and how sometimes the basic test isn't sensitive enough (my layman's term). I will try to find a link to a recent article from one of our major newspapers (I forget if it was the New York Times of Wall Street Journal) about this and add it to my post. But that's the one thing that I thought of that just might explain the so far unexplained aggressiveness of your bc -- that it was borderline (-) per the test, but perhaps would have been (+) if tested by FISH. Deanna
Here's that article: http://www.nytimes.com/2010/04/20/health/research/20cancer.html?scp=1&sq=breast%20cancer%20targeted%20treatment&st=cse
P.S. It looks like I've already suggested this possibility in a previous post to you on another thread. Sorry for the duplication if you've already checked into this.
-
Thanksfor the responses...
Will do Sam, though my BC team have already told me this is incredibly rare and indeed suggested the 2nd opinion from the Marsden: So as the UK sites don't have such a diverse and large membership, I'm actually praying the great ladies on BC.org can help.
Deanna...yes the FISH test is done here...however I will ask them to make a second test as I know the HER2 status is somewhat evasive!
Nikki
-
I agree with Sam. Granted the pals site is small-but several girls have had lengthy experiences with the Marsden. You really need to discover what is accepted protocol in the UK-what happens in the US, doesn't always happen in the UK-and vice versa.
-
I was diagnosed last March with multi focal, grade 1, ER+, HER- on left breast. I did receive 4 rounds of AC followed by 4 of Taxol. Hope that helps...
-
Nikki...please, INSIST on the HER2 FISH test. Minus that, everything else doesn't add up. There has to be a missing link and it seems to me, that this would be the most likely candidate! I will say a prayer that you get someone who is ready to jump through hoops to figure out what is going on to give you these reoccurences. Please let us know how you make out with Marsden, and getting a re-do on the HER2. (((hugs girl)))
-
Thanks Girls
Tpbillsbu - Wondering what was your tumour loading was? (ie. longest length ofeach tumour added together)? Also what was your staging?....And...(sorry to be so inquisitive, but it's such a relief to find someone with the same initial DX) - Did you have a mastectomy and was your chemo a lesser amount because it was grade 1?
Navy Girl - spoke to my onc who says they can only do the FISH test if the pathology shows a protein uptake of 2 or more. Mine was defo minus ie. not even borderline! He is recommending chemo, which I can do, however he also says possible removal of my second reconstruction and more second targetted radiotherapy. I can grow my hair back, but I can't grow another boob so this is freaking me out as it was absolutely awful losing my first LD flap reconstruction, helped only by knowing I could have the tram diep that I now have.
I'm going on holiday on Thurs to try and relax for 12 days and will go for 2nd opinion when I get back.
Thanks again
Nikkix
-
Hope you can relax, Nichola.
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