Questions and no answers
Hi:
I am new to this board as of today. I am having to make some really hard decisions and would like to ask if someone here can share their experiences with me. I think that with more information and bouncing things off of other women it will be easier to make decisions.
I will be 53 in October. I went in for my annual exam and was sent for a mammogram as I have only had one other when I was 50. I almost feel like compared to the stories I have read here that I don't have a story and yet I feel deeply scared and looking for answers. So I will continue with my story. A few days after the mammogram they called and wanted me to come in for more imaging,
So I went in they did more imaging and then had a radiologist look at the films. I knew something was wrong when instead of just telling me ok, it all look good you can go...The tech told me that the radiologist would talk to me now.. took me into an exam room and then closed the blinds. So the radiologist tells me that they found some calcifications that had changed since my last mammogram and were odd looking and clustered and felt I should have a needle biopsy to determine what was happening there. Ok now I am freaked. My sister died of breast cancer in 2003 at the age of 48. She had invasive ductal carcinoma which spread like wild fire into bone cancer and was in her lymph before they found it. She suffered a living hell for two years before she lost the battle. So this is on my mind. How could it not be seeing the closest friend a little girl grows up with experience this.
I went in for the biopsy and they told me that 80% chance that it was just benign and nothing to worry about. 4 days later my doctor called and told me that they had found lobular carcinoma in situ. She said this is the best bad news I could give you if you had to get bad news. Then she referred me to a breast surgeon.
So with my dear sweet wonderful husband holding my hand, off we went together to the appointment today. We have been married a year and ½. Him having been widowed 3 ½ years ago and I and my daughters abandon by their father 5 years ago. And truly this husband of mine is the love of my life and I his. Why it took us 50 years to find each other I don't know, but we couldn't be happier.
So they tell me that I don't really have cancer... YET
The surgeon wants me to get a more extensive biopsy to check out the cells surrounding the LCIS. And she wants me to take tamoxifen and then closely monitor my breast with a yearly mammogram and a yearly MRI.
Other option preventive (prophylactic) mastectomy.
She told me if I am going to go with the mastectomy then forget the biopsy as it will make the reconstruction harder to do.
So how does a woman make a decision like this? I look at my breast and sometimes they feel like ticking time bombs. and other times I am thinking what would it be like to have implants. How would it look and feel to me and also to my husband? He is very supportive of me and says he will be regardless of what decision I make here. I already knew this before he opened his mouth but it was nice to hear the words
Does anyone here have opinions on the safety of tamoxifen? If you read very far on the internet it scares you. Increase risk of heart attack and stoke, eye problems and uterine cancer. My mom's side of the family has a history of heart problems. Meaning my mom, grandmother and great grandmother all were having issues with heart disease. So it seems foolish to take something that is suppose to take a way one risk but adds a different one. My surgeon says that it is perfectly safe to take for women my age.. they find the side effect in older women.. But I just feel so unsure about taking it.
Then there are all the issues of mastectomy. How do husbands really feel about having a wife that no longer has natural breasts? I mean if there is invasive cancer the of course this is the logical decision to be made, but I am not at that place in life... Just at high risk to be. Could anyone share their experience here? What do implants feel like for the woman and also to a man? How do they affect your sexuality and do they affect your intimate relations one way or the other. My husband is a good man.. But I keep feeling that of course he is going to say what he thinks he should, and he may even really think he feels this way. But he doesn't have any idea what implanted breasts are like and how it would be for me to have these.
Does anyone know of a resource where I can learn more about the process of mastectomy and reconstruction? I am thinking about would I have nasty scares. Do they need to have maintenance and if so what kind. Do they eventually become "your own" like you don't even think about them being different then what you were born with? Are they soft like real ones and do they move like real breasts? Are those of you with implants happy with them? Are you regretting having them?
Any one that can give me input on any of my questions.. I will greatly and respectably be thankful
Comments
-
Hi Lje86 and welcome to BCO,
We totally get that you're overwhelmed right now. Take a deep breath and do your research. We at BCO believe that knowledge is power -- so here are some helpful links for you to read up on, while you wait for the ever helpful advice from the amazing support system here.
From the main Breastcancer.org site:
- The LCIS section is full of great information, including treatment options and follow-up care. There's also an LCIS forum that could be helpful!
- The Mastectomy section features lots of info on what to expect with a mastectomy and also info on mastectomy plus reconstruction
- The extensive Reconstruction section explains the different types of reconstruction surgery as well as what to expect, and more. The Breast Reconstruction forum can also help answer any questions you have from the other ladies who've gone through it.
- The Tamoxifen page lists benefits and side effects of Tamoxifen. The Hormonal Therapy - Before, During and After forum can help you get real-life answers from other ladies taking Tamoxifen.
We hope this information helps, and wish you the best of luck! Please keep coming back to keep us posted on how you're doing!
--The Mods
-
Thanks So Much
-
I am 41 and I was diagnosed 9 months ago with LCIS which was then downgraded to ALH (atypical lobular hyperplasia) by 2 additional pathologists at Johns Hopkins and Vanderbilt. I have no family history of breast cancer. I tried tamoxifen but I felt terrible on it. I have decided to do a nipple sparing mastectomy. I am saddened by all of this but find myself extremely lucky to not officially have cancer. This diagnosis gives me the chance to treat my diagnosis early and avoid chemo and radiation. I am a total worrier and I've thought about this diagnosis every day for 9 months. I found an amazing plastic surgeon and he's confident that my breasts will look great when I'm all done. I'm sad about losing sensation BUT it is a small sacrifice to pay in the big scheme of things! It is a very personal decision. You have to choose what is best for you! Good luck! Feel free to private message me if you'd like to ask me any questions!
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