Is our prognosis really poor?
Comments
-
Great news Linda
keep that YIPPPEEE feeling, it's a great attitude for life. -
Ohio: I am so with you on "what matters and what doesn't" !!!! I asked my onc how the hell am I supposed to suspect anything recurring since I had no symptoms in the first place? Plus extremely dense breasts so nothing even showed up on mammo. I just have to keep insisting on testing, even though lots of it is ct scans, which alone have way more radiation than x-rays.
Linda K : I like your onc's outlook on recurrence. My surgeon was quite the opposite, saying we can recur 10-15 years out. I'm trying to keep positive and keep telling myself that no one, not even the docs, know anything for sure.
May we ALL keep on going !
-
I was triple positive, pretty sure it's the HER2 part that usually recurs in the first 3 years, I know that ER/PR can come back many years later, so does what does it all mean?
-
My docs are clearly most concerned about the first 2-3 years. The way I see it is that if I get over that hump, I have a really good chance of going 10 years before a recurrence, and in 10 years they may well be able to come up with some better treatment of some kind. In other words, I refuse to sweat it. All I can do is enjoy myself and make my time count, however much of it I end up getting. The other thing I am doing is trying to stay healthy otherwise (diet and exercise), because having been through heavy-duty chemo etc, I realize that a big part of surviving cancer is being able to survive the treatment.
-
ILC is more likely to come back later not earlier is all I understand, I see this as positive as its more time to find new treatments
-
I think that if it comes back in 2-3 years it's also shown to be very aggressive, dispite the treatments, so it would be harder to treat than if it comes back later, just a guess.
-
Hi Linda there are not many upsides to a recurrence but in the event of the bad news of a recurrence one that comes back more agressive a multi-marker cancer - there are more drugs to throw at an agressive, and also the more ER/PR/HER positives the better because there is more to attack with medecine. Thank God I do not know this from my own experience, but a friend of mine was diagnosed with a recurrence very recently. She has same onco as me too. The recurrence is terrible news obviously, but the onco said the one piece of good news was that the increased markers meant more treatments to hold back the rate of development of the cancer, and he said he would be able to keep her going longer as a result. God willing that that will prove to be the case for her as she has school age children.
-
True, I am happy that I'm triple positive!
-
Is that why her 2 neg recur more even if er/or positive.. Is it possible to be her 2 positive and strongly er/or positive as well... They always told me it was good news that I was her2 neg but now I don't know
-
I'm her2+ and strongly ER & PR positive too. Her2, before herceptin, recurred more frequently, earlier, and was more aggressive, but since "herceptin" the prognosis is soooooooooooo much better, and if it does recur there are more drugs out there that target her2, so in a way it's good because there are targeted therapies that work really well. And there are several treatments for ER/PR++ too, so we have more options for treatment, should we have a recurrence.
-
So I guess it is better to be her 2 positive because its more treatable than her2 neg... I heard herceptin makes chemo more effective as well.. I am her2 neg at zero so maybe that is ok as well...
-
Her2 pos. people means there is an extra protein on the cancer cell, that is not present on Her2 neg. My oncs say it's better to be Her2neg. But Herceptin is what they give Her2pos. women, just like Tamoxifen is what the ER/PR positive women get. But let's face it -- as soon as they say one treatment is working, they come out and say it doesn't. Let's all focus on living the best we can !!!
-
I really think that the cancer that has the best treatment success rate is ER/PR positive and Her2 negative. It's just that herceptin now puts us her2 positives in almost as good treatment success as jut the er/pr pos. Make sense?
-
It does but in studies people who r her 2 positive and have chemo first with herceptin before surgery have a 50% better chance at having a compete response over her2 neg er positive people .. It's really a crapshoot but I would have loved a complete response when I did my chemo first but they said people with my stats just don't usually have responses like that whereas her positive ad triple negative do.. However they say complete response is better for survicalyet those with better prognosis stats (er positive and her 2 neg) r less likely to have that response.. It's all so confusing and frustrating.. I just want to live!
-
Linda -yep I think along the lines with Shari -- it is definitely a crapshoot. I have two friends now, dx'd stages 1 & 2, are now battling bc again, just a bit over the 5 year mark. I'm trying to keep positive thoughts -- hard as hell most of the time.

-
Shari and Shelly, totally understand the "crap shoot" concept. Maybe because they are mor aggressive, they are also quick to respond to treatment, also more likely to recur
Living in the moment is so important, and one of the things I have a hard time doing. -
I think we all do Linda .. It's hard to live in moment when ur scared
-
Shari, Linda : So true --finding it hard to as you say live in the moment. Am glad we can come to this board and let out our worries !
-
U women r great
-
Hello ladies, I started this thread awhile ago and glad to see it is still going. Though I am not on very much, am trying to not think about the beast. I was laid off in march and have been enjoying the time off spending it with family and my 2 horses. I am in my 2nd year out from active treatment, in march I started my 3rd year out from dx. I can't believe it has already been that long. I remember reading posts about how you will think less and less about bc as time goes on, I have many days where I never think about it at all. Then there are the quiet times, mostly at night, where I think " I had bc, I am going to not make it" and it feels like a punch in the stomach. But then I think positive thoughts and am ok. I hope everyone has a great day today!! Hugs to all of you!!
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