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Topic: Am I at "high risk"? If so, what then?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Nov 27, 2020 01:14PM

sasamat wrote:

This is my first post, although I've been lurking and reading a lot for months. I'm in the midst of what feels like an incredibly slow process to sort out an abnormal screening mammogram, in September (2 areas of microcalcifications).

Next came diagnostic mammogram, which was deemed to BIRADS 4a (late September). Then stereotactic core biopsies of both sites (early October). One is now called "fibrocystic change" and they say it's OK. The other is ADH at the very least and described as on the ADH to DCIS spectrum. They also feel like they undersampled that site, even though they took 18 cores, because they never saw microcalcifications in the cores and there are residual microcalcifications on the post-biopsy mammogram.

I had bilateral ultrasound last week, but won't hear my results 'til Monday.

I have a surgical excision of the ADH site on Dec 15.

Other relevant background: My mom was diagnosed with breast cancer at age 69. It was triple negative, detected on a mammogram. She opted for double mastectomy (+ chemo, no rads) and a second early cancer or pre-cancer (she can't remember which) was found on the other, "prophylatic" side. I also have BIRADS D dense breasts and that doesn't seem to be changing/decreasing. I'm 50 now, been getting annual mammograms since 40. I am called back half the time, but this year is my first biopsy. Every mammogram or ultrasound tech who images me comments on how very extremely dense I am. I have no concerning gene mutations (did the Invitae high-risk breast and ovarian panel).

I'm a biostatistician, so have of course been feeding my facts into various risk calculators. This site won't let me post any of the links :(

The Tyrer-Cuzick a.k.a. IBIS model returns a lifetime risk for me of 42%.

The Breast Cancer Risk Assessment Tool (NIH/NCI Gail model) returns a lifetime risk for me of 42%.

The Breast Cancer Surveillance Consortium Risk Calculator returns a 5-year risk of 7% and 10-year risk of 14%.

My impression is that the overall message is "high risk", yes? This is obviously much higher than for "average" woman and I've found some data on the distribution of these scores in large populations and mine are basically off the chart.

I'm asking because I'm trying to organize my head for what I will do once the pathology comes back from my open biopsy.

If I only have ADH, I am worried that I will not be followed carefully enough in the future. In British Columbia, Canada, they seem to have no recognition of "high risk" unless you have BRCA 1/2, which I don't. There is no high-risk screening program except for hereditary cancer. For example, I will not be screened with MRI. But I think that's how I would be followed in the US in Europe for me (?). I think I will be able to get an ultrasound annually now.

If I have DCIS, I would seriously consider a bilateral mastectomy, although I recognize I am definitely getting ahead of myself there. But I also gather that there's a decent chance DCIS will be the diagnosis.

I'd love to hear if I'm right to perceive myself as very high risk at this point. And how someone like me would be followed in other health care systems.
ADH, surgical excision 2020-12-15
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Nov 27, 2020 01:31PM MountainMia wrote:

Many, if not most of us, in the US, who have already been diagnosed with and treated for breast cancer have not had an MRI and will not have one for screening purposes in the future. So no, that isn't how you would necessarily be followed/screened in the US. I will have annual mammogram and ultrasound for screening purposes, and I think this is not at all unusual.

I'm sorry you're facing these concerns. Let us know what you find out with your ultrasound results.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Nov 27, 2020 03:13PM MelissaDallas wrote:

ADH does put you at higher risk, but the risk modelers are notoriously inaccurate for neoplasias. Models for my LCIS showed anywhere from 40% to 80%, but my genetic counselor said probably closer to 20-25%. On average, all US women have about a 13% risk. Though not impossible, the fact that your Mom’s cancer wasn’t diagnosed until 69 makes it less likely it is (as far as we now know) genetic.

As far as the MRIs, NCI guidelines for physicians for ADH, ALH and LCIS suggest mammogram/ultrasound rotating every six months with a clinical breast exam, and that MRI and prophylactic medication MAY be considered. After a couple, I opted out of MRI unless specifically indicated by other findings because of questions being raised as to whether contrast accumulates in our brains.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Nov 27, 2020 03:34PM Beesie wrote:

sasamat, although the high risk clinics in BC may appear to only be for those who have a BRCA mutation, it could be that they will see other patients as well, if qualified by risk percentage.

I'm in Ontario and when I saw a counsellor at a genetics clinic here, she used the IBIS model to determine if I qualified for their high risk program. I believe their cut-off was minimum 20% remaining lifetime risk (or maybe 25%?) I didn't qualify because of age - once you hit a certain age, unless you have a known breast cancer genetic mutation (I do not), it's pretty much impossible to hit the 20% risk figure. But the counsellor told me that obviously it's easier for younger women without genetic mutations to qualify, if they have other high risk factors, simply because they have more years ahead of them and therefore a higher 'remaining lifetime' risk. At 50, with your family history and ADH, your annual risk might be high enough to get you over the minimum lifetime risk bar.

That might not be how the high risk clinics in BC operate, but it's worth looking into, if you have not already done so.

By the way, with breast density, if you have extremely dense breasts, which is not uncommon for pre-menopausal women, it might take you several years into menopause before your breast density begins to decline. And of course for some of us, it never does.




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 27, 2020 04:19PM sasamat wrote:

Thanks all for the info!

> although the high risk clinics in BC may appear to only be for those who have a BRCA mutation, it could be that they will see other patients as well, if qualified by risk percentage

I talked about this at my physical exam / surgical consult for the December excision. The resident, who I saw first, indicated that in Alberta, where she trained, I would be screened with MRI.

But we discussed again once the main surgeon came in. And she confirmed that BC has no high risk program for anything other than known genetic mutations, e.g. BRCA 1/2. She's one of the main breast oncology surgeons in town, so I think this is pretty likely the case, though even she could be mistaken. I'm sure there's some sort of post-op visit, where we will already have pathology results, and I can bring this up again.
ADH, surgical excision 2020-12-15
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Nov 28, 2020 09:42AM DiveCat wrote:

Hi sasamat!

The differences across provinces can be frustrating sometimes. My own mother in Manitoba was told (before genetic testing was a thing) repeatedly by most doctors she was at no higher risk than anyone else despite her mother, grandmother both getting diagnosed before 50 (her mother with bilateral cancer) and passing away. Her great grandmother died on operating table riddled with cancer but they never determined origination. All three women were only women of their sibling group (ie I have no biological aunts).

My mother was diagnosed at 48, and passed about 11 years later, two years after her metastatic recurrence. Even at time of diagnosis in 2007/2008 the genetic counselor she first went to see did not recommend even testing for her based on their models or indicate my sister or I may be at higher risk, even dismissed it as a possibility.

My sister and I had different experiences based on where we lived. I moved out to Alberta about 2-3 years after my mothers first diagnosis. Wait for genetic testing here was long so I incurred costs out of pocket and went down to US (this was back when the BRCA testing was also still very expensive!) but for multiple reasons my mother did not want to test then so the test was uninformed but genetic counselor there still assessed me at 40% lifetime risk. My doctor here referred me to high risk clinic in Calgary, where I was again given about 40% lifetime risk based on IBIS and studies out of Toronto on family history and risk. They were incredibly informed and supportive of me making a choice as to what was best for me. They gave me option for enhanced screening (which I did very briefly) but ultimately I knew what was right for me based on my family history and I got referrals to breast surgeon and plastic surgeon and had first surgeries the following year.

I forgot to mention though, the genetic counselling appointment for me in Alberta finally came through 2 1/2 years after referral (after I had already had my PBMX) but they would not do testing if my mother didn’t first (which at that point she would not for various reasons) and basically said she would need to pass away before they would test me, so care can be inconsistent for sure.

My sister stayed in Manitoba and even after my mother passed the breast health/high risk clinic there refused to consider her of any higher risk or even run proper models (like IBIS) for hereditary risk, instead using the GAIL model which does not account enough for that kind of history. They would not consider her history beyond our mother, like grandmother, great grandmother. They would not offer enhanced screening despite her age and own breast density. The doctor at that clinic she was dealing with was rather awful in bed side manner to be honest and completely lacked tact or up to date information, even if they could not accept her without a positive BRCA test or something. My sister’s doctor referred her to a plastic surgeon anyway and she had her preventative mastectomies in late 2019.

Anyway, just posting to say you very well may be right about the high risk clinic in B.C., as in my experience protocols do seem to differ, but I encourage you to advocate for yourself on it and get all the information you can.

Hereditary High Risk, Uninformed BRCA Negative Surgery 4/24/2014 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/12/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/14/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/9/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 12/11/2020 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo Surgery 3/4/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 28, 2020 09:43AM DiveCat wrote:

Hi sasamat!

The differences across provinces can be frustrating sometimes. My own mother in Manitoba was told (before genetic testing was a thing) repeatedly by most doctors she was at no higher risk than anyone else despite her mother, grandmother both getting diagnosed before 50 (her mother with bilateral cancer) and passing away. Her great grandmother died on operating table riddled with cancer but they never determined origination. All three women were only women of their sibling group (ie I have no biological aunts).

My mother was diagnosed at 48, and passed about 11 years later, two years after her metastatic recurrence. Even at time of diagnosis in 2007/2008 the genetic counselor she first went to see did not recommend even testing for her based on their models or indicate my sister or I may be at higher risk, even dismissed it as a possibility.

My sister and I had different experiences based on where we lived. I moved out to Alberta about 2-3 years after my mothers first diagnosis. Wait for genetic testing here was long so I incurred costs out of pocket and went down to US (this was back when the BRCA testing was also still very expensive!) but for multiple reasons my mother did not want to test then so the test was uninformed but genetic counselor there still assessed me at 40%+ lifetime risk. My doctor here referred me to high risk clinic in Calgary, where I was again given about 40%+ lifetime risk based on IBIS and studies out of Toronto on family history and risk. They were incredibly informed and supportive of me making a choice as to what was best for me. They gave me option for enhanced screening (which I did very briefly) but ultimately I knew what was right for me based on my family history and I got referrals to breast surgeon and plastic surgeon and had first surgeries the following year.

I forgot to mention though, the genetic counselling appointment for me in Alberta finally came through 2 1/2 years after referral (after I had already had my PBMX) but they would not do testing if my mother didn't first (which at that point she would not for various reasons) and basically said she would need to pass away before they would test me, so care can be inconsistent for sure.

My sister stayed in Manitoba and even after my mother passed the breast health/high risk clinic there refused to consider her of any higher risk or even run proper models (like IBIS) for hereditary risk, instead using the GAIL model which does not account enough for that kind of history. They would not consider her history beyond our mother, like grandmother, great grandmother. They would not offer enhanced screening despite her age and own breast density. The doctor at that clinic she was dealing with was rather awful in bed side manner to be honest and completely lacked tact or up to date information, even if they could not accept her without a positive BRCA test or something. My sister's doctor referred her to a plastic surgeon anyway and she had her preventative mastectomies in late 2019.

Anyway, just posting to say you very well may be right about the high risk clinic in B.C., as in my experience protocols do seem to differ, but I encourage you to advocate for yourself on it and get all the information you can.

Hereditary High Risk, Uninformed BRCA Negative Surgery 4/24/2014 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/12/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/14/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/9/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 12/11/2020 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo Surgery 3/4/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 28, 2020 11:47AM MountainMia wrote:

You ask in the subject line, "if so, what then?" I know you're especially curious about screening, but it's also worth talking about risk reduction. We don't have many tools for reducing risk of breast cancer, and it seems we can only reduce it, not eliminate it. In terms of lifestyle changes, research shows we should make sure we're getting plenty of exercise, maintaining a healthy weight, and getting enough Vitamin D. Very likely having a high-quality, low fat diet is helpful, but research on diet (aside from Vitamin D, which also isn't fully conclusive at this point) has pretty mixed results.


The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Nov 28, 2020 12:38PM sasamat wrote:

Good advice @MountainMia. I feel like I am (and have been) basically doing those things already for 10+ years. I made a resolution to myself re: physical maintenance when I turned 40 and have actually kept the promise. But I'm definitely re-committing to it all! The really vexing one is alcohol, as I do really enjoy wine. I don't drink to excess, but I wonder ... how much it might matter to really drive that down? No one knows.

Thanks @DiveCat for another Canadian story. It feels like there are lots of things presented as black and white about what's known or what "standard of care" is, but it's not clearcut. And that's especially obvious when different provinces adopt different standards. Interesting to hear that you both managed to get preventive surgery w/o a confirmed BRCA 1/2 mutation. I don't have the same family history as you, so I don't think pure prophylactic surgery would be justified, with my current diagnosis. But my overall risk certainly influences how I would respond if the December surgery reveals DCIS or something more serious.

ADH, surgical excision 2020-12-15
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Nov 28, 2020 12:40PM sasamat wrote:

@DiveCat What does "Uninformed BRCA Negative" mean? I'm gathering that there's some technical meaning for "uninformed" here?

ADH, surgical excision 2020-12-15
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Nov 28, 2020 02:43PM Beesie wrote:

As another "uninformed negative", I can answer that one. Basically, if other family members have been tested and you know the specific genetic variant that runs in the family and you test negative for that variant, it is a true negative. But if all the genetic tests run on family members have been negative, or if affected family members have not had genetic testing, then you don't know whether or not a genetic mutation runs in the family - there could be one that wasn't included in the testing or perhaps one that hasn't even been discovered yet. So in this case, if you test negative it would be an uninformed negative - negative on everything you've been tested for but not a true negative because there could be a different genetic variant that is affecting you and your family.

Here's an explanation from the FORCE website:

"Negative for a mutation

A negative genetic test result means that no mutation was found in any of the genes that were included in the test panel. A negative genetic test can have several meanings, depending on the personal and family medical history of the person tested.

  • In a family where a genetic mutation has already been identified, a negative test may be considered a "true negative." This means that the person tested does not have a higher risk for cancer than the general population.
  • In some families with multiple cases of cancer, genetic testing does not reveal any answers. In a family with many cases of cancer where all members test negative for a mutation, this type of result is called "uninformative negative." The term "uninformative" means that experts cannot find the cause of the cancer in the family. Families with uninformative negative results are encouraged to contact a genetics expert regularly to update their medical history and learn if any new genetic tests might provide additional information. " https://www.facingourrisk.org/info/hereditary-cancer-and-genetic-testing/genetic-testing/types-of-test-results
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 28, 2020 09:16PM sasamat wrote:

Thanks. I had not appreciated the significance of those different scenarios, but it makes sense.

ADH, surgical excision 2020-12-15
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Nov 30, 2020 09:58PM sasamat wrote:

I got a verbal summary of my ultrasound results from my primary care doctor today. Overall, I guess I am neither comforted nor alarmed. But as a result of the ultrasound, it looks like I will be having sentinel node biopsy or a node removal (?) added to my open excisional biopsy in 2 weeks.

About 10 days after my core biopsies, I got a very swollen, painful lump in the armpit on that right side. Visible from the outside and it bothered me all the time for ~3 weeks, which had me absolutely terrified. It then got dramatically better and smaller. But something is still quite tender in that armpit.

Therefore I am not surprised to hear that the ultrasound shows an abnormal lymph node. They say the cortex is normal but there is also a "central focus of uncertain significance" (approximately what I remember my doctor saying) . The interpreting radiologist knows I am headed for surgery and recommended further exploration, such as sentinel node biopsy. There are other findings in the right breast, but they suggest it is likely needle tracks from the core needle biopsies. Between the 2 sites, they had to go in 4 times and took 24 cores. A lump we can all feel on the left has been judged a cyst.

My doctor has called the surgeon's office to ask her to look at this report and adjust the plan accordingly.

Has anyone else had SNB along with a surgical biopsy, i.e. with no known cancer diagnosis?

I also wonder how they will rationalize the (1) sentinel node vs. (2) the node described on ultrasound vs. (3) the node that is painful to me. How do we know that we're all talking about the same node? My understanding is there are many in the axilla.

I hope to get the actual ultrasound report, so I can read it myself.


ADH, surgical excision 2020-12-15
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Nov 30, 2020 10:38PM Beesie wrote:

Doing an SNB prior to diagnosis? Not usually done. In fact, an SNB isn't even recommended when the patient is having a lumpectomy after a needle biopsy diagnosis of DCIS. Should invasive cancer be found during the surgery, the SNB can be done later, as a second small surgery. Because of the lifelong risk of lymphedema, even from just an SNB, node removal is not usually done unless it is necessary, which is only after a finding of invasive cancer. (There are complicating issues for those who have a MX for DCIS, but that's another story.)

Inflamed reactive nodes after a stereotactic/core needle biopsy is not uncommon. That could explain the lump in your armpit and the appearance of the node on the ultrasound imaging.

If the Radiologist believes that there might be cancer in the node and that is the basis of the recommendation to do the SNB, then it means that they believe very strongly that invasive cancer will be found during your excisional biopsy. Do you think this is the case? Because if they don't strongly believe this, it is illogical to recommend the SNB. It would make much more sense to watch the node to see if it returns to normal, assuming that your final diagnosis after the excisional biopsy is ADH or no more than DCIS.

You might want to read here:

Topic: Ladies who had only 1 or 2 nodes removed... https://community.breastcancer.org/forum/91/topics...


Lymphedema https://www.breastcancer.org/treatment/lymphedema

"According to the National Cancer Institute, anywhere from 5-17% of women who have SLNB develop lymphedema."


If nodes need to be removed because of invasive cancer, as part of the diagnostic process, then it has to be done. But to remove nodes because it's convenient since you are going into surgery anyway.... that might work for the doctors but it does not consider the potential long-term impact to the patient.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 30, 2020 10:50PM sasamat wrote:

Hmmm. I will try even harder to get the report and read it myself. But I did not raise the issue of SNB. My primary doc did and I'm pretty sure she was reading from the radiologist's recommendation.

ADH, surgical excision 2020-12-15
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Nov 30, 2020 11:33PM Beesie wrote:

I realize I was unclear. When I wrote "But to remove nodes because it's convenient since you are going into surgery anyway..." I was referring to the Radiologist's recommendation to do the SNB; I know it's not your idea.

If you weren't having the excisional biopsy, what would the Radiologist recommend about the node?


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 30, 2020 11:36PM AliceBastable wrote:

I've never heard of an SNB before a firm diagnosis. It sounds like a fishing expedition, and if it was me, I'd want a second opinion.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. 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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Dec 1, 2020 12:02AM moth wrote:

Sasamat, if you want another opinion and can make it to Surrey, see Dr Rhonda Janzen at the breast health clinic at Jim Pattison. All she does is breasts - for benign and otherwise conditions.


Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Dec 1, 2020 01:31AM moth wrote:

oh.and i wonder if they just mean a fine needle biopsy of the mass on the lymph node, not a true excision of the sentinel nodes for biopsy. You need radioactive tracer &/or dye to do a true snlb

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Dec 1, 2020 06:05AM MelissaDallas wrote:

Moth, that was my thought. Or a core needle one. Doing it while they already had her there, rather than making another appointment just for that-but a regular needle biopsy, not a sentinel node biopsywith removal.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Dec 1, 2020 11:13AM sasamat wrote:

It feels like my doctor's inclination is to follow the surgeon's lead, i.e. let her decide how to investigate the node. The discussion has been helpful and I'll come back when I know more. If I want the ultrasound report, I probably have to physically go to my doctor's office and ask them to print it out :(

ADH, surgical excision 2020-12-15
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Dec 1, 2020 12:37PM Beesie wrote:

Yes, it makes sense that your PCP would follow the surgeon's lead. But in the end, it's your body and your decision. You have to sign a consent form prior to surgery and the doctor can only do what you agree that he can do.

Doctors don't have much awareness of lymphedema. They tend to under-estimate the risk of lymphedema from an SNB - some go as far as to say that there is no risk, which is a blatant lie - and they have little understanding of the complications of living with lymphedema, and frankly, the complications of living to avoid the development of lymphedema - I can tell you, that in itself is a pain in the a&&.

To the posts from moth and MelissaDallas, you need to ask about why type of biopsy is being suggested for the node. Is it a needle biopsy or is the plan to remove the node?

If your doctor's office has a soft copy of the ultrasound report, which is probably the case these days, they should be able to email it to you. Seems like a reasonable thing to do in our Covid world.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 2, 2020 09:01PM sasamat wrote:

My doctor called to say the surgeon wants us to organize an ultrasound-guided core biopsy of the node. So separate from the surgery and, no, she's not doing sentinel node biopsy. We are hoping it can be before the surgery, but who knows? I'm waiting to hear when and where.

Side rant:

Still trying to get my ultrasound report w/o driving to dr's office and paying 25 cents a page. They won't email it, only fax, "for security" reasons. Which is pretty ridiculous. I said I don't have easy access to fax and the admin said "Oh, so you don't work?" I said: "Oh, I work full time in tech and software and, more importantly, in THE YEAR 2020, and we don't use fax machines."

OK, no seriously, I didn't say that, because I have nothing to gain by pissing her off. But I really, really wanted to.

Therefore the fax is waiting for me at my husband's office, which is basically shut down, and we're having to coordinate with the admin staff to move it from one physical space to the mail room, where my husband can collect. So lots of people can potentially read me ultrasound report on its way to me. So, so very secure! Ha ha.

ADH, surgical excision 2020-12-15
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Dec 2, 2020 10:15PM Beesie wrote:

sasamat, the core needle biopsy of the node makes much more sense. Glad you got that cleared up.

It is really interesting these days how some facilities have completely opened up their communications, information and reports to patients, while others remain shut tight.

I had an appointment recently at a hospital I'd never been to before. I signed up for their patient portal while I was waiting, and upon arriving home after the appointment, the doctor's notes and imaging report were already available to me on the portal. By the next morning, the actual imaging was available; I put in a request for a downloadable copy and within 5 minutes had an email saying that it was available for download. By going into the portal and requesting a security code, I can give that code to any doctor or facility that requires the reports & imaging and they can download it too.

The bad news is that this hospital isn't near me. The facility closest to me for imaging is still in the dark ages - no patient portal, and you have to go in person to request copies of the reports and imaging. It drives me nuts because the place is so convenient from a location standpoint, but I hate not having access to my medical information. My PCP's office falls in between. No patient portal, but a secure email system that my doctor uses to immediately send me every report she receives; great that she does that but I'm sure other doctors in their practice don't.

It really is time for every medical office and facility to enter the 21st century and put up patient portals. The days of keeping information from the patient and passing it only to the doctor are long gone - or should be, anyway.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 2, 2020 11:23PM sasamat wrote:

Yeah, Beesie, the various offices and clinics I deal with show that anything is possible.

I get all lab results, screening mammogram results, and results from a recent FIT test for colon cancer via a very reasonable online portal. Results show up very quickly.

My breast surgeon's clinic took all my history, etc. digitally via a secure online portal. Not sure if they share results with me this way? No chance to find out yet.

But my primary care doc's office is not prepared to send anything digitally. I wish they'd just admit their systems are old instead of pretending like only faxes are a suitable method for moving medical info around. It's a ridiculous claim.

ADH, surgical excision 2020-12-15
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Dec 3, 2020 03:54PM sasamat wrote:

I am booked for ultrasound guided core needle biopsy on Dec 23, 8 days after the wide excision for ADH. Continuing my run of spacing all the procedures out :(

Here's the report from Nov 18 ultrasound. If anyone has observations on the report, I'm interested. I've never read an ultrasound report before. But I basically still feel like it's not super comforting, but it's not any more alarming that what I already know.

Is it normal to refer to the patient as "anxious"? I am nonplussed about that.

---

X-RAY DATE: 2020-Nov-18

BILATERAL BREAST SONOGRAPHY

Ms. XXX is a 50-year-old woman who recently had a two-site stereotactic core biopsy of

calcifications in the right upper outer quadrant, the more peripheral cluster in the 10 o'clock position 6 cmfn demonstrated features of DIN1B and she is due to have surgery. The more medial cluster in the 11 o'clock position 4 cmfn demonstrated stromal fibrosis, considered to be concordant.

The patient presents for assessment of the right axilla because of pain. She also mentioned that she could feel a lump in the 3 o'clock position of the left breast. This could be palpated by the technologist today. She has BI-RADS d dense breasts and is anxious; she has a family history of breast cancer, her mother having breast cancer at age 69.

Right breast: The entire right breast and axilla was examined sonographically.

In the 9:30 o'clock position 6 cmfn in the middle-posterior third of the breast is a somewhat heterogeneous hypoechoic mass within the echogenic fibroglandular tissue. In the transverse plane, on the initial images, this appeared quite irregular, though the central aspect had an

almost anechoic linear tract extending through it. There was a suggestion that this was extending towards the skin. I was unable to re-create this appearance. The entire area measures 11 x 7x13 mm. When assess this region myself, I confirm that it is lying directly medial to the more medial of the two stereotactic core biopsy scars. I suspect that this

represents the needle tract and post-biopsy changes from the benign biopsy.

In contrast no abnormality is noted medial to the more lateral of the two biopsy scars, where ADH was noted.

On the right, there is a 5mm simple cyst in the 3 o'clock position and a 6 mm cyst in the 12 o'clock position near the nipple.

In the right axilla is a single lymph node measuring at least 11 mm in longest dimension with a very thin cortex and a large fatty hilum, There is a small hypoechoic area centrally within the fatty hilum, of uncertain significance.

Left breast: A number of simple cysts are noted, in the 12 o'clock position measuring 5 mm and in the 2:30 and 3:30 o'clock positions measuring 7 and 3 mm in diameter. The one in the 2:30 o'clock position corresponded with the palpable mass according to the technologist.

IMPRESSION

1. An irregular hypoechoic area is noted in the right 9:30 o'clock position. Given its location I suspect it represents post-biopsy changes from the benign stereotactic core biopsy. A six-month follow-up ultrasound examination of this area could be performed to re-evaluate it though this may be technically challenging as this area may be included when the patient has upcoming surgery.

2. There is a lymph node in the right axilla. It does contain a central hypoechoic focus which could be concerning but given the fact that the cortex is completely normal, is of uncertain significance. If the patient is to have a sentinel lymph node biopsy, hopefully this will be addressed at that time.

3. There is a simple cyst in the region of the palpable finding.

BI-RADS 3 - Probably benign findings - short term follow-up

ADH, surgical excision 2020-12-15
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Dec 3, 2020 06:17PM moth wrote:

I actually think it IS comforting with the probably benign birads3 summary

everything so far is pointing to benign breast changes

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Dec 3, 2020 06:30PM sasamat wrote:

Thanks, moth. Yeah I forwarded to my friend who is a radiologist who reads lots of cancer scans (but mostly abdomen/pelvis). And she said "overall, this is a reassuring report". The woman doing this ultrasound looked so grim the whole time and then called the radiologist in too. I'm relieved to see BI-RADS 3.

ADH, surgical excision 2020-12-15
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Dec 3, 2020 07:29PM MountainMia wrote:

Please don't assume what a medical person is thinking by the look on their face. You don't know why she looked grim. Imagine working in any medical space right now. Wouldn't you feel grim? A family member is about to die. He wants to die at home. His wife, my sister-in-law, would like medical help for him, a nurse to come now and then. But that won't happen. THERE ARE NO NURSES available. They are busy. GRIM is how they are living right now.

Sorry for the rant. But calling you "anxious" instead of a perhaps more neutral "concerned" and the look on her face are just not the things you should be worrying about now.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 21, 2020 10:25PM sasamat wrote:

I had my excisional biopsy one week ago tomorrow and -- I called today to check -- I know my doctor now has the pathology results. In theory, she should call me tomorrow to discuss. I've gotten better re: the waiting and fretting (this all started in September) but gosh I am so ready to hear an actual diagnosis and a plan. I still have an ultrasound-guided core needle biopsy of a lymph node coming on Dec 23, regardless.

ADH, surgical excision 2020-12-15
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Dec 22, 2020 12:12PM MinusTwo wrote:

Sorry for the wait - but you can't assume he has the results. Labs are backed up like everything else. I have two different friends who had full-on surgery the first week in December - one to remove a lobe of her lungs and the other to remove part of her pancreas. Neither have lab/pathology results from the surgeries yet and both were for serious cancer problems. Good luck with the needle biopsy tomorrow.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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