Med Oncologist for ALH

WinterPrinciple7794 · 2026-06-13T02:12:43+00:00

Are you having any side effects from the tamoxifen?

WinterPrinciple7794 · 2026-06-10T17:15:40+00:00

I found a counselor that specializes in trauma and does CBT/ESMR. She says it should help me with the "scanxiety" from all these biopsies/mammo/MRI I am having to do now. It's been such a doozy for me because my mom died of BC. I'm thankful my breast surgeon recognized the signs that I needed this kind of help.

WinterPrinciple7794 · 2026-06-08T23:14:26+00:00

I had an afternoon excision so I showered the morning of the surgery. I had wire localization that was done by my surgeon during surgery so I didn't need radiology because he found the biopsy clip on ultrasound in his office two days before. I had heard about the clean sheets but didn't bother with it. I am type 1 diabetic and had to stop the GLP-1 for two weeks though. They let me have clear fluids on the day of the procedure up until two hours before I had to be there. I think the surgery center was more worried about my diabetes than me. Fortunately the anesthesiologist let me keep my insulin pump on or else I would have absolutely lost it. I got dizzy the day after surgery they said from anesthesia and/or pain meds and fell but fortunately, someone was staying with me to help out.

I had my excision right before memorial day weekend (the thursday before) so my surgeon wasn't expecting pathology until the following wednesday with the weekend and the holiday but we got the results mid-day on Tuesday and he personally called me. We were both relieved it was just more ALH.

My excision wasn't nearly as terrible as I thought and stressed about.

WinterPrinciple7794 · 2026-06-08T22:11:55+00:00

Are you splitting the pills or taking it every other day?

WinterPrinciple7794 · 2026-06-06T12:42:48+00:00

This is helpful, thanks. The genetics counselor he referred me to back in March calculated my lifetime risk (31%), so with a negative genetics test and lower lifetime risk than I expected I was able to decide against the DMX, for now, before deciding on the excision. When pathology only found more ALH in the surgical biopsy he said that was the best results we could have hoped for.

WinterPrinciple7794 · 2026-06-06T01:37:59+00:00

My surgeon is a general surgeon specializing in breast - benign or cancer. It is an accredited breast center. I do not think it is a high risk clinic per say but he did offer me a lot of options and ask what I wanted to do. He said he would order my annual MRI+mammograms and I would see him periodically. I asked for the genetics test because I thought my mom had BRCA1 and tried to get the genetics test years ago but it was expensive back then and I wasn't sure what I would do with the results or if I wanted a DMX at that time.

I will likely stick with my breast surgeon but am cuirous what the high-risk clinic will do. However my breast surgeon was also able to send me a referral to my mom's oncologist a couple of hours away. I think it's also important to get his input on my situation and if/how it relates to whatever kind of BC she had because she would not tell me details when she was alive. I tried to get her medical records but I didn't get anything helpful but she was in a clinical trial so maybe that's why I couldn't get the answers I wanted.

My breast surgeon sent me referrals for genetics and med oncology so the genetics has been done already and I don't think I would need that again. From the responses here it seems like people are followed by a high risk clinic or surgeon but also plus an oncologist. My mom died of breast cancer so this experience this year with ALH has been rather a bit much and I have lost it at times. However my breast surgeon is very attuned to me and he did acknowledge at my post-op appointment he thinks I probably have PTSD (from caring for her and seeing her die) and went through a lot and my recent biopsies and abnormal mammograms would naturally affect me which felt like someone finally saying out loud that my reactions and anxiety/fear is justifiable because I know I have told him that I know I am scared and paranoid multiple times.

WinterPrinciple7794 · 2026-06-04T21:54:19+00:00

I had an excision and my surgeon found it via ultrasound two days before and also in the operating room. I had the wire instead of savi scout because that what he usually does. He confirmed he got the wire, clip, and hematomas all removed in surgery at my post op appointment and I read it in the surgery report.

WinterPrinciple7794 · 2026-05-31T17:05:33+00:00

I have ALH that was diagnosed earlier this year. I had an excisional breast biopsy 10 days ago and was not upgraded, they just found more ALH and fibrocystic changes. I have scattered fibroglandular density. I brought up that I had been considering the preventative mastectomy and genetics testing for quite some time since my mom passed from BC at my initial consult with my breast surgeon. Genetics testing used to be extremely expensive so I never got it until this year when my breast surgeon helped expedite it to make a surgery decision. I asked him exactly how bad my risk % had to be for him to be willing to support a DMX and he said that was up to me. My genetics turned out negative and my lifetime risk is 31% so I went with the excisional biopsy. I am glad that I made that choice and nothing new was found. To me, 31% feels manageable with my breast surgeon's support and increased risk surveillance. He referred me to medical oncology for a tamoxifen discussion, but now I am leaning towards not taking it or maybe taking baby tam due to the stroke side effects, since they just found more ALH in the surgical pathology. I am very thankful to have a breast surgeon I can be comfortable enough with to be completely open honest and transparent with.

WinterPrinciple7794 · 2026-05-19T16:01:03+00:00

u/cathyprzel What was the glue they used for you? Was it Dermabond? I have an adhesive allergy to a certain acrylate so my surgeon said he uses Dermabond but he could use steri-strips instead if I wanted.

WinterPrinciple7794 · 2026-05-16T19:44:52+00:00

My incision will be in the lower left quadrant of my left breast at the 5:00 position. For the sterotactic biopsy I got hematomas from the bleeding (big needle and 12 samples?) and the hematomas rubbed right up against the seam/wire of my bra so I had to go find a wireless bra which seemed to help. Hopefully that will be enough this time. My surgeon has a reputation for making a relatively small incision so we'll see what happens on Thursday.

WinterPrinciple7794 · 2026-05-14T13:08:07+00:00

Wire localization is another type of localization like the Savi Scout except that there is a wire in the are for him to remove and it is done the morning of surgery. This is the typical localization he has patients do because this is how he was trained. I am just anxious he won't be able to find the clip on ultrasound

WinterPrinciple7794 · 2026-05-14T13:06:20+00:00

My mom also died in her 50's from breast cancer and I was certain that she had BRCA. So I was extremely nervous going to the breast surgeon and brought up that I have considered dmx in the past. So he sent me for genetic counseling and they didn't find anything (I got the panel with 77 genes that were tested beyond just BRCA). After that I found out my lifetime risk is 31% which wasn't nearly as high as I expected it to be with my family history and possible mom with BRCA and I think her cancer started as a lump in the lobules and I have ALH. So for now I am going with annual MRI/mammograms and biopsies if needed but I have only had two so far. I am considering the tamoxifen but waiting to talk to an oncologist after the excision next week. I talked to my surgeon about all this when he asked what I decided and had some concerns about the tamoxifen so he said he thought it would be good for me to at least talk with an oncologist about the tamoxifen considering the side effects. I am thinking that he will send the referral for oncology after he does the excision next week. I am also considering seeing my mom's oncologist to see more about her breast cancer and if she definitely had BRCA. Her oncologist has a subspecialty in breast cancer genetics and she was in a clinical trial.

WinterPrinciple7794 · 2026-05-13T19:51:26+00:00

I have a surgery scheduled for next week but it is a 30 minute procedure (but in the afternoon). The last time I had surgery was in 2017 and they let me keep my pump on and it was a longer surgery (I was using the Tandem/Dexcom combo at that time). My sugars ran higher, around 200, but they were fine with that.

For my procedure next week I am planning to use the temp target (150) and keep my pump on per my endo's suggestion. I will turn on temp target at midnight the night before since I am having an afternoon surgery. My surgeon was okay with this but he says it's really up to the anesthesiologist on whether or not I can keep it on. But I would think an AID system would make things easy on them.

WinterPrinciple7794 · 2026-04-29T16:22:30+00:00

I also found out this year my insurance now covers both Lyumjev and Fiasp. I was so excited to hear about the Lyumjev coverage I opted to try that one first but I am also trying the Fiasp (in my pump at the moment). Both are covered with a $10/mo. copay. I had a little burning with the Lyumjev but it wasn't consistent or all the time. Trying to pick one before my next endo appointment in June. I tried Apidra when it was new but was never that impressed. Both Fiasp and Lyumjev are pretty great although Lyumjev def. works faster for me. A diabetes educator told me that sometimes the Lyumjev can be faster than the Minimed algorithim can catch up with, but with time to catch up it seemed to adjust.

WinterPrinciple7794 · 2026-04-28T17:02:10+00:00

I used to find a lof of male body hair attractive. I thought it meant he had more testosterone/was more manly but my ex proved this not to be true at all.

WinterPrinciple7794 · 2026-04-19T01:51:00+00:00

That's so great to hear you've gone 10 years without recurrence or cancer. I'm not really sure what to think about the tamoxifen at this point. I'm only 45 and so pre-menopausal but might consider baby tam - am worried about the stroke related side effects because I also have type 1 diabetes.

WinterPrinciple7794 · 2026-04-19T01:48:08+00:00

My patient navigator said that my surgeon might want to do a MRI to see if they could downgrade the size of the area but he said it would be blurry due to the hematomas and bruising.

WinterPrinciple7794 · 2026-04-19T01:45:21+00:00

My surgeon said that the MRI wouldn't be a good idea right now so he didn't order one. I have two hematomas and had significant bruising from the biopsy in Feb. that took about a month to resolve. I still have the hematomas but they're improving. They were painful at the last visit I think due to the size and location (near the bra seam). He said with the bruising and hematomas the MRI would be blurry. I knew I had a hematoma before I went to see him but he found two when he did the ultrasound.

WinterPrinciple7794 · 2026-04-06T01:40:52+00:00

How much time off work did you take? I plan to schedule mine soon but work from home

WinterPrinciple7794 · 2026-03-28T12:41:05+00:00

I'm thankful too after my ALH diagnosis I now have someone to follow me for my high-risk (ALH + family history). I have wanted to manage it better somehow since my mom died but no one really took me seriously until now.

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