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Topic: ALH - cannot take chemo preventive medicine

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Jan 2, 2016 10:52AM

Mom12344 wrote:

In 2002 I had a liver cell adenoma removed via liver resection - benign no further treatment. In 2010 I had a bloody discharge from my nipple - had a ducal excision which was negative however atypical lobular hyplasia was incidentally found and removed. A year later right nipple had bloody discharge all was found negative. I was told most ducts were removed and no discharge would/could occur. Mammograms have all been fine, normal ultrasound a few months ago but dr recommended I see oncologist as my risk factor due to new research on ALH was over 30%. Oncologist agreed and wanted to start me on chemo preventative but due to my previous liver tumor felt the risk over weighed benefit. I am 43 now onabreast Mamo / ultrasound/ Mri schedule.

With ducts being unable to discharge does this actually prevent a warning symptom?

Kind of feel like a ticking time bomb and dread tests. I have a low family risk so no eligible for brac testing through insurance, I am over 30% at risk for breastcancer due to ALH (plus having it at a young age before 40s) my liver mass was benign but oncologist is not sure it would raise my risk %

GRM
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Jan 2, 2016 02:12PM LisaAlissa wrote:

Hi Mom12344,

I'm sorry that you're having to deal with these worries.

I'm wondering how you've determined you're at a low family risk--if you haven't met with a genetic counselor, you might want to ask for a referral. They would ask you to collect information about your family and their health conditions. (If nothing else, it makes for some fascinating phone calls and visits to various relatives.;-) ) With the right information, and your own history, a genetic counselor might well be able to advise you further--and discover a basis for your insurance to fund testing.

Are you still seeing your MO? The question you pose about not having the possibility of discharge as a warning sign seems like one for him/her. I am not a medical professional, but since many (most?) women don't have a discharge before a BC diagnosis, I'd be less worried about not having discharge in the future. The careful monitoring you're undergoing should help you identify any problems before they can become unmanageable.

There are a lot of people here who become anxious and dread an approaching test. And you may always feel that way--as someone once put it, you don't have to like it, you just have to show up. Another approach is to come up with some analogy that works for you. This is just part of your routine health maintenance. Like brushing your teeth/seeing the dentist twice a year. Or going in for a pap smear. You should feel good that you've identified a good team and are doing the things needed to take care of yourself. You don't expect something, but you let them ID any problems and deal with them.

Another approach is to link these tests with some little treat for yourself that you save for these times. Maybe a spa day to finish off. A special dinner following. A visit to a bakery that's near the testing site for a treat that's only available there. You won't be fooling yourself, but setting up those sorts of associations can help. It's a little like a roller coaster. When you're at the top (before the "drop" you can either try to "hold back" (which always feels terrible) or just "go with the ride."

It sounds like you have a good medical team working with you and a plan in place. Now you just need to work the plan.

HTH (and let us here back from you!),

LisaAlissa

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Jan 2, 2016 02:23PM farmerlucy wrote:

You might take a look at the multigene panel from colorgenomics https://getcolor.com/

Many of us have done it and it includes a session with a genetic counselor. It is a very good value at $249 self pay.



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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Jan 2, 2016 02:27PM - edited Jan 2, 2016 02:28PM by farmerlucy

There is also another young woman on these boards who is taking tamoxifen preventatively for 20 days before her MRI. There is some thought that it may give a better image for someone with extremely dense breast tissue. Might be worth asking about.

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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Mar 7, 2017 08:45AM djmammo wrote:

Here is an article related to optimizing MRI imaging relative to hormone levels:

http://www.breastcancer.org/research-news/20091120b

Board Certified Diagnostic Radiologist specializing in Breast Imaging helping members understand their health care provider's reports and recommendations.
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Mar 7, 2017 10:02AM windingshores wrote:

I had the opposite problem, discharge for years, tested a few times and no cancer. So I paid no attention to discharge when I did have cancer!

It's probably not the most important diagnostic sign to monitor.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Oct 12, 2017 01:48PM pinsandneedles wrote:

ALH and raloxifene - has any one tried it?

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Oct 12, 2017 03:37PM momoschki wrote:

No ALH here-- rather a dx of ADH. I've been taking raloxifene for 3 years so far

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left

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