Recently diagnosed. Considering DMX. If I do it what monitoring needs to be done? Do I still need hormone therapy?
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Mastectomy recovery was good and bad.
Incisions healed well.
I had drains in for 3 weeks and developed big seromas even with the drains . The left drain was bloody and repulsive the whole time. I became severely anemic and required IV fluids for nausea and dizziness lasting 3 weeks. I was basically in bed the whole time. My only pain was in week 3 when my chest Skin felt like I had a flaming bra on. Like Jack Jack in the movie “Incredibles”.
The day I finally felt better was the day before my reconstruction. Now the flaming feeling is gone. I only have incision pain at night. Nausea and dizziness came back with a vengeance. Hematocrit was 8 or 9. I V fluids helped and now I’m on iron supplements. Feeling better. Reconstruction appearance is not ideal where the skin stretched from seromas. She should have drained them. I have 2 extra breasts stuck to the side of my ribs 1/2 way between my shoulder and waist. I hope someone can help me.
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Well tbh that doesn’t sound good at all! I’m so sorry and you’re scaring me a bit here
I have ADH and may have genetic risk. Considering DIEP reconstruction
Reconstruction didn’t last…..had to have the silicone implants removed after some years. That led to a permanent allergy to anything with silicone including pads for an ablation. Had a rash all over both legs as well as the chest.
Hello, I just had prophylactic double mastectomy for LCIS about 3 weeks ago. I opted for no reconstruction. It wasn’t too bad. I didn’t feel much pain at all, even from day 1 post op. I didn’t want reconstruction due to the extra time that I would have to spend in the operating room and the potential to bleed more. I already have low platelets. Now, the concern going forward for me is how is monitoring going to be done now that mammogram won’t be possible to catch anything early given that there may be about a 10% breast tissue remaining. MRI is not going to be possible either. So the only monitoring tool is using your fingers to feel for lumps afterwards. Anyways, that is the biggest concern for me at this point. Hope it’s can help you in making your decision.
Is there any reason you cannot still be screened?
I just don’t see how it is possible technique wise after mastectomy to screen using mammogram which is usually the most effective method of catching cancer at its earliest stage. The nurse at my breast clinic said it would be using ultrasound. Ultrasound wouldn’t be able to detect such things as micro calcifications, which is what was detected via mammogram for me which then lead to discovering my LCIS. I guess I can push for an MRI but without reconstruction done, how is that technically possible.
Have ADH and genetic mutation. What is your experience with doing these surgeries as preventative measure so don’t have to take estrogen blockers and avoid side effects?
Hi Ellie, to help you connect with other women who have ADH and are considering their treatment choices and weighing surgery and estrogen blocking treatment, I merged your 3 questions into one discussion here:
– Anyone had a prophylactic mastectomy for ADH diagnosis? https://connect.mayoclinic.org/discussion/has-anyone-had-a-mastectomy-for-adh-diagnosis/
You will also find fellow ADHers talking about treatment options in these discussions:
– Atypical Ductal Hyperplasia (ADH) and taking an AI like Anastrozole https://connect.mayoclinic.org/discussion/anastrozole-4/
– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
Because an MRI doesn’t work like a mammogram getting compression to do the work. It uses magnetic fields and radio waves to do the work. It can see inside your body without actually touching the tissue.
Also if there is anything suspicious they could order a CT or a PET/CT, which searches out cancer and lights it up for the doctors to see.
Does this ease your mind any?
Yes. This is very comforting to know. Thanks for taking the time to respond.
Nipple sparing DMX or not?
I’m going to be scheduling prophylactic DMX with Diep due to Adh and family risk. Need a lift prior to DMX if I go nipple sparing route. This adds a procedure and recovery and also a delay. Is it worth it?
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