My Breast Cancer Journey Part II (Now Invasive Lobular Carcinoma?)
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- čas přidán 5. 08. 2024
- This is where my breast cancer story changes on a lot. My identity now will forever after be linked to the words "invasive lobular carcinoma" which will doubtless include a life long educational and diagnostic journey. This changes everything, so I may not only need another mastectomy but I may need all new oncologists because mine just don't know much about this more obscure and under-studied kind of breast cancer. Thankfully there are specialists not too far away and I'm getting in touch with them. (Remember to consult with your doctor about your pathology changes after mastectomy!)
- Related Videos:
Recently changing my mind from lumpectomy to mastectomy: • How I Decided between ...
This is my full DCIS (stage zero breast cancer) story: • My Breast Cancer Story...
My early days with DCIS in 2020: • Lumpectomy Just in Cas...
- Links about ILC and my new docs:
The Lobular Breast Cancer Alliance has been the biggest resource by far for me lately: www.lobularbreastcancer.org
A video discussing the differences between ductal and lobular cancers: • Imaging Differences be...
The surgeon that I'm excited to be meeting with before the end of the year is Dr. Rita Muktar at UCSF. She sees only patients with ILC now, because most of her days are spent on research for ILC. www.ucsfhealth.org/providers/...
The medical oncologist here in Portland that I'm working with now, also an ILC specialist, is Dr. Sasha Stanton: www.providence.org/doctors/me... (She worked at UW a few years ago, where she worked on this technology: • Dr. Sasha Stanton: Aut... .)
Need the basics? Here's a basic overview of how cancer cells work: • What Is Cancer? What C...
Chapters:
0:00 Intro
1:00 Where I'm at now in my mastectomy surgery recovery
1:39 If I could go back with what I know now, would I have a double mastectomy?
2:21 Why wouldn't I go back now and get another mastectomy?
3:06 Why would I go back and have a second mastectomy?
4:13 My trauma history associated with scans and imaging for breast cancer
5:40 The new factors: Lobular Cancer is hard to see on imaging AND likely to reoccur
7:15 The prevailing myths and misunderstandings about Lobular Carcinoma
8:05 How lucky I am to have caught the lobular cancer early
8:42 Deciding whether to find a new surgical team now, who know more about my cancer
9:21 Do you speak of your cancer as being a past tense or present tense?
9:57 Finding a new surgeon for my second mastectomy
10:44 Looking out of state for doctors and surgeons for breast cancer
11:47 The choice to seek out the best possible medical care, and the costs
12:53 Another reason to do a second mastectomy now and not later
13:41 Factors in having a prophylactic (preventative) mastectomy when it's not urgent
15:17 Whether to get a nipple sparing mastectomy next time
18:07 Aesthetic Flat Closure and how I'm feeling about my onco plastic closure
19:44 Goldilocks Mastectomy vs. Aesthetic Flat Closure: there IS a difference
20:39 The cleavage factor vs. Aesthetic Flat Closure: there may be a difference
22:54 The value of symmetry and spinal balance in mastectomy
24:51 Upcoming video topics
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#seekingdeeperhealth #nwnutritionist #lobularbreastcancer #mastectomy #cancerdiagnosis
Thank you. I was "accidently" diagnosed with ILC (5mm tumor) in July. Further testing for abnormalities in the right breast showed a suspicious area in the left. I hope we both find satisfaction with our medical team for continuing care. Thank you for taking the time to share your journey ❤
Hello dear! You are gorgeous and so articulate! I was 44 when I elected to have a double after ILC diagnosis… I never had grief either! But I did get gummy bear silicone implants in 2005 and now that I am 63 and MBC with lobular really regretting! So good for you for not taking anything foreign into your body. My oncologist doesn’t want to take them out even though they are compromised for fear of cancer spreading so I am stuck with them. Lobular came back after 16 years… and still very see through on most scans… so they often tell me stable disease when actually lobular had spread from my bones to now my liver…. My advice is to be so forever grateful for the DCIS that allowed this tiny 2mm ILC to be found! Mine was 2cm and already in my sentinel lymph node. Still l loved my life for 16 years not looking over my shoulder and had hoped I was cured. Now 3 years in to MBC, and living with it like a chronic annoying disease. Loved your video! So helpful for others!
Why on earth wd they not take them out? Do you know about the LBCA? Incredible resource for us with lobular!
I was diagnosed two months ago with Invasive Lobular Carcinoma in my right breast. In the Ct scan they discovered I had multiple enlarged lymph nodes in my retroperitoneum upper and lower, my biopsy showed large B cell Non Hodgkins Lymphoma. Many tests, biopsies, soon a bone marrow biopsy. I have a June 19th bilateral mastectomy on the schedule with a plastic surgeon doing an immediate reconstruction. Having read much about invasive lobular cancer I knew I would absolutely have the double mastectomy. There’s always so much to consider. Blessings to you
That is a LOT at once, my friend. I am holding you in my thoughts and prayers today.
Hi i was dx with invasive lobular 12-23 i am a nurse in texas. I got yearly mammograms but very dense breasts. Had a bilateral mastectomy got two opinions from two breast surgeons one wanted to do lumpectomy and other wanted to do mastectomy and axillary node dissection. I fought the node dissection but thank goodness i did it and the mastectomy. My tumor measured 2.5 cm on mri and was measured by palpation by two breast surgeons and two oncologists. I got my pathology back yesterday and the tumor was 12 cm with 21 nodes removed and 19 were positive. I am shocked to say the least and going to md anderson in houston for a second opinion and California to an integrative institute.
Ask to see Dr Jason Moabbi there at MD Anderson. He knows lobular better than anyone! Bless you for setting an example of going to get the best help. We should all be so self-loving.
First, let me say thank you for having the courage to make this video and sharing with all of us such important information. In June 21, I was diagnosed with invasive lobular carcinoma. I had a double mastectomy with reconstructive surgery at the same time However, it was later discovered that the tissue that was supposedly negative at the time of the surgery turned out to be positive. And so my reconstructed breast was radiated when I received my radiation treatments of five weeks of daily radiation. And this caused capsular constriction. I had tissue sent to California for a onco test. And my numbers were low enough that showed I didn’t need to receive chemo. so now I take aromatase inhibitor pill nightly. This is to suppress any estrogen in my body. But because of the pill I’ve now developed osteoporosis and I am in the middle of trying to decide what to do about the osteoporosis. Overall I’ve done very well considering everything. I did have my nipples tattooed. And I feel I have very good results and I’m happy with the outcome. I’m still fighting insurance to reimburse me for the cost. After my initial diagnosis, I was researching everything I could find on ILC and I remember mentioning something to my doctor That most of the information seem to be on the other breast cancer, and not ILC. and he disagreed with me and I felt that ILC was grouped in with invasive ductile cancer. And I didn’t bring it up after that.
You are so right--ILC is ignored for the most part. Did you find the Lobular Breast Cancer Alliance? We are starting up regional groups for women who want to fight for better research for ILC. I'm volunteering with the project now. The LBCA is an amazing org for us Lobular survivors.
Because of all I've learned from @estrogendiaries videos I am now on my 3rd attempt at finding an oncologist I trust and my second surgeon. I love my new oncologist. She understands ILC well. I had ILC which was accidently caught very early. My 1st surgeon did a lumpectomy. I really liked and trusted her, but her support staff literally wasn't there. Can you please tell me what type of reconstruction you had at surgery? I have found a new oncosurgeon to do a DMX and she has a plastic surgeon that is going to do a goldilocks DMX. I have to say I was distressed a few days about no nipples, and than I read about the tattoos. I am so sorry you had to go through so much. 😔
I have a few videos on my closure. I had flat closure on one side and a goldilocks closure on the other--just using extra breast skin. Hope you find these too!
Thank you for sharing your experience. My surgeon refused to do the implants at the same time as the mastectomy. Now I know that it can indeed happen that tissue are later examined positive.
And about your aromatase inhibitor: Please check the website predict calculator. The benefit of this antihormone therapy is mostly less than 2% that don't outweigh the side effects such as osteoporosis.
I was diagnosed with stage 3 lobular last year. I had large tumours which I was told was fat by a nurse. In the UK they don’t screen until 50 years old. I had a mastectomy and now have to do chemo, radiation and hormone blockers.
I am sending you my warmest wishes and hoping you come though this with renewed vision and hope.
Thank you for sharing your experience. I have lobular cancer, diagnosed in Feb 2023. I have undergone 6 months of chemotherapy and will be having a double mastectomy in October. I do not have the option of immediate reconstruction due to also having cardiomyopathy and having to limit the time I am on the table, but I was not really keen on implants anyway. There is surprising little information about aesthetic flat closure. I have engaged a plastic surgeon to oversee my incisions and closure to make sure I get the best closure result as this will likely be my only chance, my entire team are hoping to minimise the number of procedures I have. It is videos like yours that give me the confidence that it will work out ok.
How’s it going? Well, I hope!
@estrogendiaries hi. I had my DMX five weeks ago. I am really lucky and there was no cancer in the lymph nodes even with a tumour bed which turned out to be about 10cm in size. Also got clear margins. However they attempted a Goldilocks, but it was not quite successful. We engaged a plastic surgeon but the result is lumpy with folds. I'm coming to terms with it as it is still healing. A part of the skin died so radiation is also pushed out to January. I am glad to be alive but I can't wait till I'm healed. I don't miss my big boobs at all!
I was diagnosed with dcis this year and underwent a lumpectomy. Not only were borders not clear but they also saw an invasive carcinoma. I was talked into another lumpectomy. They found more dcis and again borders weren’t clear. I am now scheduled for a bilateral mastectomy in spite of my oncology doctor saying my “right breast is fine and a mastectomy is not needed”. I had to push for this, in spite of wanting a double mastectomy in the first place. I will be having surgery in a week. I don’t want to save my nipples but do want implants. Yes it involves several more surgeries. I am still try to figure it all out. I appreciate your research and videos. Still trying to figure it all out.
How did it go? Well, I hope.
I am so happy you are finally doing what you want to do!!!. I am seeing a different surgical oncologist in 5 days! Although I really liked and respected my lumpectomy surgeon, her support staff caused me unnecessary stress. I reached out to 3 nurses and didn't hear back for 11 days. After 6 days I started looking elsewhere. Keeping me waiting for over a week seemed to be a pattern with this breast cancer center. 🎀 hoping your surgery goes well!!
Thank you for being so transparent. I was diagnosed in December with invasive lobular carcinoma. It was stage 2. I had the surgery...lumpectomy. The onco test revealed I was within the margins. I was at 20. I had to be below 25. I am disabled & desl with chronic pain, muscle spasming, extensive nerve damage. I am supposed to have a spinal fusion, but I am not sure I will undergo it. It's so invasive. Now...my question to you is, did you go on estrogen blocking meds??? With all the reactions possible, I am leaning toward not taking the blockers. What are your thoughts. Oh...one more thing, I am 60. Thsnks for your time. I am going to pray for you.🙏🩷
Hi Mary! I’m still in the menopause transition and I’ve decided to wait until menopause to decide. Lobular really responds better to AIs like Letrozole and not tamoxifen. So I have a few more months to decide. Keep up with me at my new podcast “A Breast Cancer Diary” here on CZcams as well as podcast players. I’ve shifted my focus there.
❤
I had a double mstx a few weeks ago and immediate reconstruction. I had invasive ductal carcinoma on only one side plus DCIS.
Glad you're on the other side of this. There's so much relief, huh?
Did you have radiation or taximofen as well?
No, not yet. I am considering participating in a trial for lower dose Endocrine therapy. My invasive breast cancer was Lobular, which doesn’t respond as well to tamoxifen so I was waiting until I naturally entered menopause to consider which AI to try. Exemestane has had the best results with Lobular so that’s the one I have my eye on now that I’ve entered the transition year to menopause. Meeting with my medical oncologist this month to see if the trial is still an option and if I’m close enough to menopause!
I hope you went to a different surgeon!
Yes, I did!