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Topic: women 60+ with Neg breast MRI then recurrence

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 30, 2020 06:39AM

Mavericksmom wrote:

Not expecting much of a response, but does anyone know if there are statistics for women over 60 with a negative breast MRI, and a later recurrence?

I only have one remaining breast, I had a mastectomy when I had ILC (2019) after having had two lumpectomies for IDC in the same breast (2003). I was denied a bi-lateral mastectomy in 2019 because the cancer hospital policy was not to remove a healthy breast unless the women was positive for one of the BRCA gene mutations, and I am not.

I just had a breast MRI, will never do it again, but very glad as it showed no sign of cancer. I had an area of suspicion, pain and thickness, but mammogram and US were both negative, thus the MRI. I am 66 years old. I can't imagine there are many if any false negative MRI's in women my age, with little density. I can't find any statistics on that.

I have an appointment for a follow up visit and mammogram in May (2021). I just wonder if mammograms are even needed for at least 2-3 years following a negative breast MRI?

I can't find any statistics on recurrence after a negative MRI for women in their 60"s and older. I understand how a false negative could happen in young women with dense breast, but not in someone like me.

I feel at my age, I am nearing the "wouldn't live long enough for breast cancer to kill me" phase of my life.

I have other health issues like high blood pressure and obesity that I am focusing on now. I honestly feel I am breast cancer free and will remain that way for the rest of my life.

Any older women out there have a negative breast MRI and then a recurrence? If so, how many years after the MRI?

Again, I am not expecting any responses because the lack of statistics seem to indicate that a recurrence doesn't happen in older women with a negative breast MRI.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 30, 2020 06:48AM farmerlucy wrote:

This is not the answer to you question - but I decided to stop annuals MRI six years after my mastectomy. The implants are under the muscle, so hopefully I could feel something sinister, OR God forbid it is a distant recurrence. I turn sixty this year. I having my last colonoscopy next week. If it’s clear I’m done with them. Good enough is good enough. I hear you,

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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May 30, 2020 09:07AM Mavericksmom wrote:

Thank you farmerlucy!

I appreciate your comments. I think as we age, our perspective changes. I am at a time in my life that I want to enjoy every single moment, but at the same time, I don't want to focus on dying and what could kill me. Sure, prevention is still important but I view it differently than I did when I was young. I am not interested in testing in order to follow standard protocol. There are no guarantees with breast cancer, but if my breast surgeon really thought I would end up with cancer in my remaining breast, I am pretty sure he wouldn't have denied me a Bi-lateral Mastectomy.

There doesn't seem to be any data out there for public view to indicate that older women get recurrences in the opposite breast or same breast area, within two years of a negative breast MRI.

I probably will keep my May 2021 appointments for mammogram and examination, but only because I know they won't cause me harm. I am glad the breast NP I saw ordered the MRI and is on board with me going to a once a year follow up schedule. She told me I could stay on the "every three month" follow up, but when I asked her why I should I do that after receiving a negative MRI result, she had no answer except for my "peace of mind!" I get too stressed before follow up visits, so more doesn't give me peace of mind. Negative test results do that.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 30, 2020 06:25PM wallycat wrote:

I can't speak to statistics so cannot give you informative advice....

At 66, you could possibly live another 25-30 years...I know "they" say cancer is slower growing the older we get, so there's that...but if it spreads, and it was something preventable, only you can make that call.

I opted for bilateral mx purely because I also did NOT want the constant monitoring with MRI (or anything). I just want to rant on behalf of any/every woman that has wanted an elective bmx and was turned away. Geeze...21st century and a hospital can still dictate your life?!!!! I wish you could sue them!!!

As for your doctor "knowing" whether it would recur or not...Shame on him for thinking he's a god of some sort. If cancer were so easily predictable, none of us would be here stewing about our futures and our treatments, blah, blah.

best to you on your decision.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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May 31, 2020 01:10PM Mavericksmom wrote:

Hi Wallycat!

You are right, maybe I have ~20 more years or more. I am NOT ready to leave this earth anytime soon, hope I didn't imply that.

I must say a big "Thank You" for saying that you wish I could sue them for not allowing me to have a BMX. The short story is I have been carrying around anger about that for over a year and a half and decided I need to just let it go. I guess I was trying to give in to the benefit of the doubt after having a negative breast MRI.

I went to a cancer hospital for my biopsy, by the time I saw the breast surgeon, all my tests and disks from my 2003 IDC through Dec 2018, had been sent to this facility. I assumed I could get a BMX and was not prepared to be denied one. The part that really upset me was that he never even asked why I wanted that. I wanted it for the same reasons you wanted yours and more. I was 65 at the time, my husband was nearing his 78th birthday. He was my caregiver and if I get cancer again, I will be on my own after surgery. I wanted to avoid that. Also, as we age we are usually not as healthy, so a surgery in the future would be even more risky. Should I get breast cancer in my right breast, radiation treatments are off the table. I will NEVER allow any radiation therapy to any part of my body, having believed the lies I was told in 2003. Sure, they told me how advanced radiation was, how safe, how most people only get "a little red" on their breast. NOT ME!!!! I was burned so badly with jelly bean size blisters on top and the entire skin underneath sloughed off! It came back to haunt me with my DIEP reconstruction in Jan 2019 when I had my mastectomy and reconstruction. It took a whole 7 months for the huge wounds on my breast to stop bleeding. I took pictures of the wounds every week or so because it was so frustrating and painful and I needed to see I was making some kind of progress. I received no support from either my breast surgeon or plastic surgeon. The only advice I got was "wash with soap and water and pat dry, and apply the bandages!" If not for my home care nurse who got the plastic surgeon to order Santyl cream, it would have taken even longer to heal.

I am actually at a good mental spot now, even writing all that, remembering how much I suffered, I just want it to be "over" and try to live again! I could have gone for a second opinion, they told me that, but I didn't and I do regret that, but I want to move forward. I am not having my other breast removed now, unless I get diagnosed again.

Now I am focused on the genetic testing which I am going for in July. I don't know if there are any new tests since 2010, but I am going to see a genetic counselor in July. I am doing that for my children. My mother, two sisters and a cousin on my mother's side all had breast cancer. My oldest sister had IDC and non-Hodgkins lymphoma at the same time and later developed MDS from all the radiation treatments for the other two. MDS killed her. Because only my cousin and I were premenopausal, there doesn't seem to be the interest in finding a hereditary connection, but I am going to hear what the counselor says anyway. I already had the BRCA tests in 2004 and BART in 2010. I am BRCA negative and I don't think there is anything new to test, but I guess I will find out.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 31, 2020 02:23PM wallycat wrote:

My BRCA1/2 genetic test was done because I was 49 (1 month shy of 50) and my dad had Ashkenazi background. I also tested negative. At the time, I knew nothing about CHEK genes and as I read and read, I know there are at least 50+ more genes discovered that contribute to breast cancer. I can't imagine any place doing a panel for all of them.

I'm happy to hear you are in a good place. It is like just at the time we are most vulnerable and unsure of our decisions, we are forced to make them. I can't say attempting to sue them would do much except put the fear of god in them so they don't do it to other women coming up the road. So if you're ever in the mood for a battle, you can take that one up, LOL.

Best to you and your future..may it be long and healthy.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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May 31, 2020 03:39PM AliceBastable wrote:

Isn't approving or denying a BMX up to your insurance company, not the surgeon?

I'm 70. Tomorrow I'm having a CT scan to make sure my kidney cancer from two years ago hasn't come back, plus to check my heart for a possible problem, plus to make sure my lung nodules haven't grown, plus to make sure the radiation damage hasn't gotten worse. Tuesday I have my two-year follow-up mammogram to check my boob and a half. I won't refuse tests because I want to know what's going on in my body. But if anything would need invasive treatment... I won't know how I'd feel until and unless I have to face it. My parents and paternal grandparents all lived into their 90s, so I'm hoping for another 20+ years, but I'm not sure what I'd put myself through to get there.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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May 31, 2020 04:56PM - edited May 31, 2020 04:58PM by Mavericksmom

Hi Alice, yes I would certainly think the insurance company would have some say in the matter, but it went like this: Dr. “You will need a mastectomy because of your previously radiated breast."

Me: “I want them both off!"

Dr.: “I won't do that, we don't remove healthy breasts here!"

Of course I know they do preventative mastectomies for BRCA positive patients at the hospital I went to because I read stories in their news letter. I am BRCA negative. One of my sisters was diagnosed a few months after my surgery. She had a Penn Medicine doctor and she was told she could have a lumpectomy with radiation, mastectomy or BMX. She had a 9mm IDC. No rhyme or reason, but it's all water over the dam for me now.

I guess I am looking for reassuring statistics showing that after a negative breast MRI, women with little density in their breasts remain cancer free for many years.

Wishing you the best with your tests tomorrow! I totally agree with having testing that do little harm and give a lot of information!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jun 1, 2020 09:28AM - edited Jun 1, 2020 09:29AM by wallycat

Again, there is ZERO way to know how many cancer-free years any of us has. Zero. Even gals still on antihormonals develop recurrence, which is "against the odds," while other gals who skip post-treatment sometimes never develop a recurrence. Scans are the least reliable way to determine future outcome; they are an entity of ONE..that time, that moment, that area scanned because our bodies are constantly changing and growing new things (and/or killing them off). And worse, scans are not always reliable at picking up what they should. My mammogram and my ultrasound NEVER detected my lobular cancer; only an MRI did that. And still, it got the size wrong. That's my 2 cents.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 1, 2020 01:14PM Mavericksmom wrote:

Wallycat, out of curiosity, how do you think your life would have been different if you had a negative mammogram, US AND MRI? Do you think you would have gone on to live cancer free? Do you think it would have been there, too small to be seen and if so, when do you think it would show up on mammogram, US or MRI? I'm just curious, because that is what I am facing. Please know, I am NOT trying to provoke any kind of specific response, I am just trying to get someone else's point of view, and you had some very thoughtful comments.

Ironically, my first breast cancer also showed up when I was almost 49 years old. (IDC). Almost, 16 years later, Dx ILC. Both in left breast.

I know there is no way to know for sure if or when it will show up in my right breast. Having a negative 3D mammogram, US and MRI suggests to me, that if I am diagnosed in the right breast in the future, it won't likely be in the next year, probably not in the next 5 years. Of course I will have annual mammograms but I expect them to be negative.

I am certain that if women who were BRCA negative in the last 20 years had been prevented from having a healthy breast removed, there would be a whole lot more data to know how likely IDC or ILC shows up bilaterally. Since so many women chose to have both breasts removed, we lost a lot of data. I don't blame anyone for asking to have both removed, that's what I wanted too! I can't help but feel that the driving force behind the cancer hospital policy that I was treated at was the desire for collection of data for research. I could be wrong, but I have no other answer for why they have a “no healthy breast removal" policy.

I wish there were statistics to validate my feelings that I will be cancer free for the rest of my life, but apparently they don't exist. Ironically there are statistics that a Bi-lateral mastectomy gives the women a 90+% chance of never having breast cancer again with the dded bonus is not needing mammograms again!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jun 1, 2020 03:22PM wallycat wrote:

Mavericksmom, I totally get your frustration because I have asked myself that exact question many times...what if I had done nothing (either intentionally or through mis-information)..would I still be here? Would I have a cancer that spread? would I just have a huge tumor in the one breast. Would it be possible that my tumor could just stay the size it was and just "be" there? Could I be one of the lucky ones I've read about where the tumor disappears on its own and I'd never have been the wiser, being able to keep my lovely breasts? I have had going on 14 years to think about it over and over. And now I "get" to wonder if I'll ever have a recurrence, which cannot be checked till I have symptoms.

Interestingly, as I was being prepped for surgery, a (lady) doc who was doing the injection to find my sentinel node (and her tech) both said they've seen too many lobular cancers recur contralaterally. She was elated when I told her I was coming back for a BMX. Her tech flashed me and said "see, these are fake because everyone in my family has lobular."

Now they are going by the statistics they have seen/witnessed, so that isn't to say every lady with lobular cancer will follow that same course...that is the frustration...the not knowing.

They speculated that my cancer was around for 5-10 years....

I doubt hospitals are rejecting women's desires for their own method of research. Unethical and certainly if they got caught, a quagmire to wade through. I did have a gyn that refused to take my ovary when it developed a dermoid. "We don't castrate women unnecessarily" was her comment, never mind I'd still have a functioning other ovary and oh, maybe less estrogen so maybe never getting breast cancer...but I digress.

Decisions are always made with the information we have PLUS what our psyche and personality can live with. Some are less averse to uncertainty or risk; others need more control (where possible) to limit their anxiety and fears. Statistics can offer you trends or likelyhoods but never exacts or risk averse are you?

One last posit for you:

My husband had a higher PSA about 20 or so years ago; they did a biopsy and it was negative. They told him to come back annually...he went back once and the PSA had not changed. At the time PSAs were starting to get poo-pooed and were not reliable. He moved on. Fast forward to last year when he got dx with metastatic prostate cancer. Was it great he had 20 some years not worrying or thinking about it or *DOING* something or having it watched? Or is it horrible that we are dealing with this in the sunset of his life and all the cost and scan after scan after scan and injection, blah, blah. He's fortunate that he has zero side effects from all the crap they are throwing at him for now....but hindsight, he said he'd wished he'd been more willing to have been checked regularly. A little too late.

Your choice is yours. Even if we knew statistics, you have to live with the possibility you may or may not fall out of the bell shaped curve. Only you can decide that.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 1, 2020 04:13PM Mavericksmom wrote:

Wallycat, THANK YOU! You have given me some food for thought. I had already decided to continue being checked and with mammograms, but only once a year, unless I think there is an issue. My breast NP was fine with that.

If not for information gathering, what other possible reason is there to deny a women a bilateral mastectomy? It wasn’t my insurance it was the doctors! I guess I will never know.

I am so sorry to hear about your husband! My father in law passed away from prostate cancer. Sadly there were no PSA tests then, it was back in 1986. He didn’t have textbook symptoms so it was well over a year before they knew what was wrong with him.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jun 1, 2020 05:42PM wallycat wrote:

I'm sorry for your FIL and for the family. As all of us here understand, "symptoms" and how we present is never any confirmation of what we actually have.

DH's dx was an incidental finding. We had started to walk more and do some intermittent speed walking and he had shin pain that would not let up. I finally (!!!!!) convinced him to go to an orthopedic doc and they normally do xrays. THe ortho didn't think anything of the findings but the radiologist sent his labs (which he hadn't done in 20+ years) for a PSA. It was 10,000+ . No joke. The shin pain was not related to the cancer, just happened to actually be from the walking.

This is my humble opinion--some doctors have very strong feelings about patient care and their oath to "do no harm."

I've read here where some doctors refuse to do a "clean" look to women who know they won't do reconstruction, convinced they know they'll need the spare skin. Some doctors don't listen and some doctors think they are gods and some doctors think they know better what their patients "need." Like I posted about my gyn---the surgery would have been easier and faster if she'd taken the ovary, but nope...she had her opinions. I worked with her husband and DH and I were at their house and it wasn't like she was outhinking me...her belief was just very firm on that. I could have gotten a second opinion but I was only 37-38 and scared.

I hope you live to 90+ and can shake your fist at all your doctors!!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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