ADH Club
Comments
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ballet12, thank you. My mom's identical twin who passed away from breast cancer, another sister who is now stage IV breast cancer and my mom who just had double mastectomy because she had pre-cancer all had the genetic testing done and don't carry the BRCA gene. I think they should use my families genetic testing for studies because they can probably find another gene since we carry something. My mom's dad, all 6 of his sisters died from breast cancer. This is why my surgeon and I have been takling about mastectomies because I feel like I'm a ticking time bomb. I will wait until after my next MRI though to decide.
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Hi Colleen, I can see why you don't want to wait. Best of luck to you. I don't know how the MRI will help in the decision, except to see if you have more evidence of other areas of concern to be biopsied, I guess to make an even stronger case. Obviously if they "found" something that was malignant, the mastectomy would no longer be preventative and it would include the sentinal node biopsy (which probably wouldn't be done for prophylactic mastectomy). The ADH, itself, doesn't usually "spread" from what I've read. It's just that it can progess to the next stage, which is DCIS. That's what I had. The ADH that I had most recently was adjacent to a large area of DCIS. I also had ADH diagnosed 18 years ago. I can also see that if you don't do the mastectomy, you will, for sure, continue with frequent imaging, potentially many biopsies, not to mention chronic anxiety. So, it sounds like a rational life choice.
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Well today is the day we all dread for me. I have my 6 month follow up with mammogram today. Fortunately for me until this morning I was thinking my appointment was next week. Otherwise I wouldn't have been able to sleep last night. I have had some thickness and pain in my left breast which has always been my good one, not the one where ADH was found. So praying I will get an all clear.
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Good luck mvspaulding! Praying for the all clear. Hugs.
ballet12 - That's good to know that ADH doesn't spread. I did not know that. I am so new to all of this. It has been a crazy few months. Would an MRI not tell them if the ADH had become malignant? I really do have a lot of learning to do. I have had 6 biopsies so far with the last 2 being surgical so I just don't know how many more biopsies I want to go through. At least so far, I don't have to rush into a decision. Thank you for your help.
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So, not exactly a great day and not an all clear. Thought I was golden because my mammogram appeared to be clear. Then when I was being examined by BS I told her I had been having some pain and kind of thought I felt something in my left breast. When she examined she also felt something and I was then back at imaging having an ultrasound. Just my luck that the radiologist had already left the office by the time my US was done and my BS was unclear on the results of my ultrasound. So now I guess I will have a sleepless night wondering if there is really something there to be concerned about. My BS said she would most likely be able to discuss with radiologist my US pics and be able to call me with some news tomorrow.
Melissa
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So sorry you have to wait until tomorrow for your results. I will say a prayer that you will sleep tonight and not have to wait too long to get the all clear. Hugs!
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Thanks Colleen, it was a little disconcerting that I went from "nice and boring" to a look of concern on my breast surgeon's face. I am praying that I make it through this scare once again! Don't know how many more of these check-ups I can take, worry soooo much.
Melissa
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Hi Colleen, I hope Beesie or someone else pipes in on this. I don't believe that the ADH proliferates like the DCIS does. It seems that it stays contained in a smaller area. That isn't to say that a person couldn't have lots of clusters of ADH in the breast in different areas. The DCIS does proliferate. It grows within the ducts and can potentially be quite extensive (although still non-invasive). So, if there are genetic changes that develop in the ADH and some develops into DCIS, that's what "spreads." An MRI can tell if there is a suspicious area, and the calcifications and other signs that accompany ADH and DCIS look a certain way on the MRI, whereas solid tumors look a different way. The MRI can't definitively say that something is malignant. Only the pathology from a biopsy can, but those trained to examine MRI's are able to give BIRADS scores just like they do for mammos, so they estimate the degree of suspicion. I imagine that even if you weren't seriously contemplating a mastectomy, they'd be giving you an MRI in 6 months. Just be prepared for a biopsy or two, because MRI's show lots of "false positives", things that look suspicious and then aren't. MRI's are super sensitive and pick up everything, good and bad.
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thanks Ballet12, that was really helpful
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Ballet12, thank you for all of your information. I really appreciate it. How are you doing? I feel bad that I have been benefiting from your knowledge but haven't asked how you are doing. Hopefully good!
mvspaulding, I'm hoping for good news for you tomorrow.
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Thanks Colleen, I am hoping you find a way to get through your wait and that you will come to a decision that is best for you!
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Hi Colleen and myspaulding--I'm doing fine. I actually consider myself lucky, that all I have had is DCIS, and yes, I also had ADH, diagnosed 18 years ago. It took 17 years to go from ADH to DCIS, so not too bad (with several other surgical biopsies in between). They found more ADH last year (in a different location). That's what originally showed on the stereotactic biopsy last June, and the DCIS was found on the excisional (surgical) biopsy, and lots of it (that proliferation business). Anyway, I was fortunate to get it all in three lumpectomies, plus radiation. Colleen, I feel for you and your situation, and myspaulding for your 6 month follow-ups and scares. Hopefully you will get good news this time. I didn't do continual routine 6 month follow-ups over the years, only if they were following something, so I can see how it would be really stressful.
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mvspaulding - Thinking of you today and hoping you get good results.
ballet12 - I am glad to hear that your are doing good. You have been through a lot too. Hugs
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Thanks Colleen, unfortunately it is not good results. My BS called and said that the radiologist is concerned about a spot that is about the size of a pea and I am now scheduled for a biopsy next Wed. I hate, hate, hate this process! I guess I will just try not to think about and worry about it too much until then, if that is possible.
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mvspaulding, I can certainly identify with your hatred of this whole nasty process! Sometimes I feel like we are just waiting for them to find something, and that life is chopped into stressful 6 month intervals. It just sucks.
Wishing you all the best for your biopsy Wednesday!0 -
I am so sorry that you didn't get the all clear today. Good luck with your biopsy next week. Try to keep busy and not worry too much. I know that is usually easier said than done since we know we are already high risk. Keep us posted. Hugs!
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Thanks ladies, I have two kids age 16 and 20. My 20 year old, my daughter, is a worry wart. She already knows that I went yesterday and was waiting for results. My question is do you fill loved ones in on what is happening or just wait until it is over so they won't worry with you? I know my daughter is going to be asking soon and not sure if I fib, hoping it turns out B9 or tell her what is going on.
Melissa
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My daughter is 17 and a worry wart as well. I have been telling her everything along the way so far but I have been keeping it as positive as possible and telling her they are being very thorough. Good luck.
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Thanks Colleen, I decided to tell her as well and tried to stress that I have been through this before and it came out just fine and there is no reason to believe that it won't be the case again, now if I could just convince myself of this as well. I really love being able to talk to other woman that have been there and know what it's like! Hugs!!!
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I totally can relate to all that is posted here. I never thought 5 months ago I would be posting on a BC site. Quick breakdown, I have had 3 core biopsies and a sterotactic biopsy and a open excisional biopsy. First the left breast found ADH in the first 2 biopsies and then had open excisional biopsy and found ALH and LCIS also in left breast. BS requested for me to have an MRI on both breasts, which then had to have core biopsies on both. Findings were on Left breast more ADH and now right breast has all 3 too. Going to have another open excisional biopsy now on both in the next month. BS has suggested 2 options after biopsy, go on Tamoxifen or have mastectomy. I have opted to not have the mastectomy. So once I have the next 2 biopsies it will be medication and yearly MRI's and every 6 months mammograms. No history in my family of BC and never had any problems in the past. So I guess it is just a wait and see thing now. So glad to have this site to vent since I dont have anyone that understands the emotions you go through with all of this.
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It does get better though. I have a couple of negative MRI/mammograms under my belt now & I don't get anxious nearly as far ahead of the tests as I used to.
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Well, I had my core biopsy yesterday and I am supposed to hear from my doctor tomorrow (Fri) with results. I don't know why this feels different than my past two biopsies but I find myself really nervous over this one. I have had a lake trip planned with my sister and some friends for weeks now and decided to go ahead and go. I am probably going to get results on my way to the lake, just hoping I will have something to celebrate and not the opposite. Also, I have never had a core biopsy before. I have always had an excisional biopsy. I am quite sore still, anyone know how long that pain lasts normally?
Melissa
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Hi Melissa. i only stayed sore a few days, but it probably also depends on what part of the breast they do.
Have fun on your trip & here's hoping for benign results for you.0 -
Hi Melissa (myspaulding): Best wishes for a good result on your core biopsy. Before 2012, I'd only had excisional biopsies, but in 2012 and 2013 I had two cores (in addition to three lumpectomies, but who's counting). I found that the pain from the core biopsies was minimal, lasting about two days at most. I wore a good sports bra for a few days and used frozen peas as an ice pack. I was able to return to my ballet class two days after the second biopsy, with modifications, and to my other dance class, a day later, with no modifications. I did develop a hematoma after the core on the right breast, but that didn't bother me too much, in terms of pain. I'd check with your radiologist's office (or surgeon's office), as to whether you can swim immediately after a core biopsy. I know that it isn't advised after excisional biopsies (my first surgeon advised waiting at least a month). Again, sending positive thoughts for a benign result.
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Thank you Melissa and Ballet, for your replies and well wishes. It is starting to feel better today just sore to the touch. I was wondering the same thing about swimming but it says I can take my pressure dressing off today and the steri-strip can come off tomorrow. It says I can take a bath today so I am assuming I would be fine to swim. But I guess I will check when they call today. It was just a small hole so I can't see why it would be a problem.
Melissa
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Well got the good news on Friday late afternoon on my way to the lake. Benign! Love that word. Made my trip a big success because I had something to celebrate!
Melissa0 -
I'm so glad. Very happy for you.
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Thanks! The breast is very bruised and kind of hard underneath. I am hoping this is normal for this type of core biopsy.
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You probably have a hematoma where the blood has pooled on the low part of your breast that will take a while to resolve. If it should feel hot or get sorer or you start to run fever get checked to make sure you don't have an infection
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Congratulations mvspaulding on your good news!
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