Just getting started

I had the breast MRI last Friday. To date no-one has contacted me about the results. I had an appointment with my neurologist today. Things are fairly stable with neuro kinds of things so we talked about my recent DCIS diagnosis. He was kind enough to pull up the results of the MRI and we talked about them a bit. I did have these, thankfully, forwarded to my new breast surgeon so the local docs listed to get copies are likely just waiting for me to talk with her.... she was not the referring doc however... Anyways, the MRI showed the area is 4.8cmx2.8cmx1.8 cm vs. 3x2.5x1 shown on the diagnostic mammogram in early July. Is this due in part to the MRI being more accurate, actual growth or I'm thinking maybe both? It also mentions "non-mass enhancement leading to concerns of mammographically occult noncalcified DCIS. Additionally, primarily plateau and persistent kinetics.....

Also, how important is "mild background parenchymal enhancement" which showed up with both breasts? I've had two biopsies in my right breast before and there is a 6 mm area I've been unaware of which is "stable" from 2017 annual mammograms - different area where a fibroadenoma was found some years ago.

They recommended another stereotactic biopsy if I plan on breast conservation.... NOT - I think this seals the deal for MX which then means BMX given I'm fairly large, etc. I would not plan on reconstruction either. I have enough concerns about healing from BMX without adding to that anyways. I am scheduled to graduate the wound clinic tomorrow (hands and feet ongoing) - other areas heal "OK" though take a little longer now. 5, 10+ years down the road I expect other areas to be a bigger issue....

Beesie???? Any help you can offer with the above please??? Anyone else willing to weigh in? Thanks so much you all. I don't know what I would've done without you and this site!

Thanks so much barbaraprev! I wish you well with your surgery this week! Please check in and let us know how things went and how you are feeling when you are up to it. I so agree with you on how helpful people are on this site, wonderful and helpful information, as well as not feeling alone. There are many things where I don't think people have to be going through the same or similar thing to help others. I believe this is a life event where others going through it are the best help even though we each have differences in our journeys... Best to you with your surgery!

Thanks Rah2464! I will be very surprised if I don't have IDC lurking - or microinvasion - even while "stuff" as Beesie said may also present in the mix. Obviously would be great if that is not the case though just won't be surprised. As I get closer to surgery and certainly soon after I would appreciate any insights you can offer from your earlier recovery days. One of my best friends will come in from WI (quite a drive) for 2 weeks. That will be a godsend!!! She will be more help with practical things really - we both know that about each other : ) Thankfully a new co-worker will take me to Cleveland for surgery and my friend will drive me back home and then back later for my follow-up as she heads back to WI - I'll arrange for a ride back to central PA- likely another co-worker. Cleveland is just over 4 hours from here though I was born and raised in the area with one sister left there and then extended family. Anyways.... the morning is getting away from me now so I will close off for now....

I saw local RO yesterday. They knew before I got there I likely would not have radiation due to scleroderma. They ran me through the 2 hour appointment anyways, which was fine. they were all very nice and helpful in different ways. I met with the actual RO doc the last 45 minutes or so. He provided a lot of good information. He also was more candid with me than he typically is with most patients. He was quite honest really about radiation oncology being a business and yet he wants to provide me with accurate info., etc. he said he did not want to go against my CC rheumatologist's wishes radiation be avoided. He also said the "standard patient" has 5% impact on heart and lungs and some of this can occur years later. I hear others' RO and MO deny these kinds of things and leave people feeling so invalidated with heads spinning. He said I am not the standard patient, etc. He recommended mastectomy, even brought up BMX, reconstruction, and went on and on. I thanked him profusely for his honesty and all the time he took. I think and hope he would be as honest and take as much time if someone like me were considering radiation and uncertain. So I canceled Cleveland Clinic RO (telemed) next week. I already knew where I was, it's reinforced even more and I don't want to be wasteful of an appointment slot someone else could really use.... Telemed appointment with CC breast surgeon tomorrow..... The breast MRI finally arrived to them today - they were unhappy the local hospital did not overnight it. I had faxed a report and the CD was on it's way so.....

Thanks for responding Rah2464! I won't have an implant especially given all I've read on the scleroderma boards well prior to the DCIS diagnosis. Given similar concerns and my healing issues (frequent flyer at the local wound clinic the last 2 years - autoimmune related) I won't consider reconstruction of any kind. I was clear on that before this diagnosis. that seems odd I even thought about it though just reading many posts by women with scleroderma about implants especially at various points just helped me come to that decision, indirectly I suppose, 2-3 years ago. I also watch too much "Mystery Diagnosis" and "Monsters Inside Me." LOL though I do love those shows.... LOL

Thanks for the tip on P.T. referral and button-up's. I think it is this site that has that long list of helpful post-mastectomy tips. I will look for that again over the weekend - I looked at it recently. Honestly, my biggest concerns at this point are when I can drive and when I can resume even some work. I have a ride to and from Cleveland for the surgery and even to the follow up. My options for a ride back from follow-up are concerning me more - people just aren't social distancing who have made offers and I'm really uncomfortable.

Additionally I am doing telehealth (I work half-time) as a psychologist from home due to COVID. I'm in with a very small group though we are all self-employed. the vast majority of my clients will be all right for 2 or so week without me though I also know things will pop up. I also know they would prefer not to go 2+ weeks without touching base. Given my healthcare expenses, only working half-time and self-employment I also really can't afford to be completely off work all that time or longer. I'm doing "phone only" (so don't have to worry about appearances right after surgery lol). I don't know how comfortable I'd be a week after surgery holding a small cell phone (I don't have or want a Smart Phone) and ethically being able to work with someone if even for 30 vs. 53-55 minutes... and maybe taking a 1/2 hour break between clients and only talking with a few clients a day that second week. I was concerned too when I saw "everythingw" say she had trouble talking for a minute or so soon after surgery. I'm hoping that is better for her now...? I guess I can talk with the BS about these things today as well.

I just had a telemed visit with my hematologist/oncologist. She was absolutely awesome with really good energy and quite personable! We talked about basically the drawbacks of Tamoxifen/AI's, esp. since I have erythromelalgia and already at higher risk for blood clots and am only 2% estrogen positive - or I think she may have been open to it. Obviously the fact I'm going BMX was a large factor too. She did not mention an actual med though said she is considering something else - I had the impression IF there is no invasive cancer or everything changes. My hematocrit and hemoglobin have been on the rise too - no other doc seems concerned though I know that relates back to the erythromelalgia so asked her about it since she is also a hematologist. She is ordering another genetic test based on this - she acknowledged it makes sense - THANK YOU! She will be great to work with though obviously I'm hoping our work is short-term which means better prognosis for me.

LizLynne it just does not cease to amaze me to continue hearing stories like yours... Sorry you have to go through all this again and in a more major way! Thanks so much for well wishes! I wish you the best as well! You have a little ways to wait yet though that is how these things go...

Thanks for replying barbaraprevost4! Sounds like our experiences may be a little different given location. I've had various painful sensations in both breasts over the years and know that is not uncommon and not abnormal either. I think this one is a new sensation? Maybe psychosomatic as you said or related to neuropathy which I'm also diagnosed with though usually that impacts my feet the most. Prior to diagnosis though I had shooting burning pains in my left breast so who knows.... it will be interesting to see if it remains after surgery. that could still mean psychosomatic though vs. it just stopped my DCIS and breast are gone....

Thanks for replying everythingw! Good to hear from you! I guess what really made me wonder about the pain being breast cancer-related is I know I have dying cells in there (comedo-necrosis) - I kind of find that a little funny now...I guess it's all so small I would not really feel that at this point though it made sense to me for a few minutes at different points. I suppose if the dying cell area was really large it would make more sense though it will not get to that point.... I'll make a note to ask my BS anyways since I'll be seeing her in person Friday... I don't have many questions at this point so might as well ask....

I hope you are doing all right in your recovery and pressure is improving... Hopefully you're feeling better overall even if still a ways to go...

Surgery went much longer Monday, about 5 1/2 hours all total, though all went well. No cancer in the sentinel nodes which is an obvious relief. I had lot of pain medication prior to moving up to my room around 4:30 or so yesterday. I then only took Acetaminophen at 8 p.m. last night. I was discharged this morning and took 1,000 mg for the 4 hour trip. The BS gave me Tramadol upon leaving the hospital b/c I did not want Vicodin or anything with Codeine in it. I did quite well during travel today which really surprised me. I wasn't driving of course. Just took a couple Ibuprofen 1/2 hour ago. My pain has been minimal and fleeting when the big zings happen. I will take a pain med before bed tonight b/c I only got 1 1/2 hours of sleep last night due to having the roommate from hell. She refused to use her call light so would yell many times throughout the night for staff and about 3 a.m. this morning began beating things. She would say she couldn't find her call button and the nurses kept telling her it was right beside her. She seemed to benefit from all of that. I just need to sleep well tonight!

The nursing staff last night, as well as the BS and her resident this morning, could not believe how well I was doing. There is a high pain tolerance in the family. I also think some of what they did helped. The discomfort of the drains I kept hearing about is not an issue at all for me - I think it's how they have them secured. yes, they are a pain to drag around though that is different. BS also mentioned a negative pressure wound vac as something that just occurred to her when we met Friday. She contacted the rep between then and my surgery Monday and the rep helped put that in place during the surgery. So I not only have the 4 grenade sized drains though also this large gray box for the next week. I do not understand how this works (there is no fluid for it to collect it is strictly to keep things clean and prevent infection) though I just think it may be helping with other things? I hope to get two of the drains removed next Tuesday when I go for follow-up.

So pain management-wise since I was doing so well last night and until I left today the nurse told me to take the Acetaminophen every three hours and Ibuprofen three hours later and just keep alternating like that going forward. Obviously if I want to take a pain pill I can though may just reserve those for sleep if needed. Don't get me wrong I can feel soreness and the occasional zings though really low level overall.... it's amazing though I've heard many other people's similar stories.