I went in for my annual mammo. in Dec2012. I was recalled for additional views and U/S. The Radiologist came in and told me they were seeing 2 different areas. The one could be seen with U/S so said that would be the easiest to biopsy. I waited a couple of weeks due to insurance issues. I had an U/S guided biopsy on 7Jan13 that came back +for IDC and DCIS. My doctor got me referrals with surgery and oncology. I saw both the following week. I saw the oncologist first and she wanted me to have an MRI to determine the size of the area, we weren't sure if there was 1 large area or 2 right next to each other. I saw the surgeon 2 days later who gave me a couple of options. She indicated if the area(s) were as large as they were saying she didn't know if she would be comfortable doing a lumpectomy, getting clean margins, and leaving me any tissue since I'm quite small. She also said the lymph nodes looked OK on the MRI but would look at them either way. I had already decided if I needed surgery I'd opt for a mastectomy. The next week we biopsied the 2nd area stereotactilly just to see if it was anything and it came back +for DCIS. I had a modified radical mastectomy on 15Feb. and haven't had any issues and opted for no reconstruction later. The surgeon told me she thought she removed 6 lymph nodes and they felt soft to her. In seeing her the next week to see if my drainage tubes could be removed the pathologist called with his report. She had removed 8 nodes and all 8 were negative but he also found a 3rd very small cancer, actually a 2nd area of IDC. in the specimen. It came back Estrogen+. I saw the oncologist again to discuss treatment options and chemo. was mentioned. She also asked me if I'd be willing to do an oncotype DX test to see where we went from there. She told me we were aiming for a number 18 or below. I came in right at 18 and she told me I could get by with pills only but in plugging in some other numbers by adding chemo. my recurrence rate would decrease significantly. The pathologist graded my tumor at T1c but due to the size of the IDC 1.95 with cutoff of 1.99 the onc. wanted to make it a 2a (I think, 2 but not sure of letter but assume a). I agreed to chemo. and start on Monday 8Apr. She had mentioned initially 1 treatment every 3 weeks for 4-6 cycles but don't know if that has changed or not, guess I'll find out when I talk with her on Monday. She called it a TC regimen. I had a port installed last week to make things easier since my left arm can't be used any longer for such things. I used to do mammograms when I was working so when I heard "we're seeing something that wasn't there before" it alerted me to the possibility of it being cancer. As the local was being injected for the first biopsy a calmness came over me and I told myself, "what it is it is and what it isn't- OK". I attended a chemo. orientation class last week and got lots of good info. and the infusion area looks most comforting as I don't have any family close by as I start my journey and the oncologist wanted me starting sooner rather than later since I want to move back to my hometown, hopefully once the chemo. is done I can. The oncologist also said I may need radiation as the surgeon elected not to remove any chest muscle as it looked fine to her but the margin was within I believe 1 mm from the breast to the muscle. What a way to start 2013, oh my!!! To top everything off when I was working I did Mammograms and more than once heard a doctor say, "we're seeing something that wasn't there before". Those are almost the exact words I heard in my case. Before my 2nd treatment the breast patient navigator asked the onc. for me; "how many treatments is she looking at?". The onc. looked at some numbers and indicated I could get by with 4 instead of the 6 that was a possibility at the beginning. So at this point I'm halfway through and can look at moving back to my hometown this summer some time (that's the plan anyway) and I can look into getting a consult to see if I need radiation or not as there is a cancer center there. My onc. had told me before I agreed to chemo. it wouldn't be easy and I was thankful for her honesty. I finished my last chemo. treatment on 10June. My onc. got me in for a consult with an RT while I was house hunting. He indicated I need radiation due to the distance between the largest, more aggressive cancer and the one found on the surgical pathology. I was worked in for my Sim appt. the next day so had that done before heading back to the other side of the mountains to get packed up and moved. I got to my new place on the 14th of July, went in for a "dry run" and made sure my cradle fit properly the next day, and started treatments on the 17th of July. He told me I'd need 28 and then be on an Estrogen blocker for at least 5 years but guess current studies show 10 is better. On 1Aug2013 I saw a new oncologist in my new town. He told me my port could be removed since I'm done with chemo. but I had been told it needed to stay in for a year so will play that by ear as I don't mind going in every 6 weeks or so to get it accessed and flushed. I also think he said the cancer found on pathology was a lobular one but not sure what type of lobular as I've read there is more than one type. 23Aug2013--completed my 28th and last radiation treatment. The last 2 weeks a bolus was added and I didn't need any boosts. The left side of my chest and axilla are bright red but the skin is intact thank goodness. Normally with 2 weeks left my RT would have prescribed an antibiotic cream to be safe but I'm allergic to the main ingrediant and he felt I'd be OK without it. 6Sept2013--F/U appt. with oncologist with blood draw, he said I'm doing well. He wanted me to think what I want to do for my osteopenia which I had before all of this started. He gave me 3 options; 1)pills, 2)infusion of meds once a year, or 3)shots (twice a year I think) and told me to discuss this with my PCP. I did that on 9Sept and he told me pills have been around longer so that is what he'd recommend. He called a 'script for Fosamax to my pharmacy and I'll take 1 a week and see how I do with them. I have followup appts. in Dec. for a mammogram, blood draw, and an appt. with the RT and Onc. and see where I go from here as 2013 sure has been one heck of a year. 2Dec2013-had my yearly screening exam on my right breast and all is OK with it, followup in 1 year. Saw both Drs. a week later and everything is OK by them, also. Neither one could believe how much hair I now have after being totally bald 6 months earlier, see both in 3 months. 12Mar2014--3 month fu appts. with both drs.-all is good. Told Onc. I plan on keeping my port in for awhile when he asked me again about it. See both in another 3 months. 6Mar2014--had my first haircut after being bald in May2013, also added pink highlights. Invited by Rad. clinic to be part of their Relay for Life team as they wanted some survivors along with their employees to walk all night and I signed up immediately and have raised over 3x the amount I was asked to raise. I'll walk the survivor lap and then put some time on the track. That will fall one week before my 3 month followup appts. with both my RT Onc. and Med. Onc. The Relay went great. I saw both Drs. on 13June2014, Onc. said he'd see me in 4 months and the RT said 3 months but asked what the Onc. said. I told him 4 months so he said I can see him at that time, too as their offices are right across the street from each other, about 7 miles one way from home. I saw both Drs. on 10Oct2014, all is well. My Onc. has turned my care over to his nurse practioner who I'll see in 4 months. The RT said 3 again but changed it to 4 and said after that he'll probably extend out my visits to him, possibly 8 months or so. I'm due for my annual screening mammo. in Dec. on my remaining breast. My mammogram on my right breast remains normal, followup in 1 year. 3Dec2014-annual screening mammogram on right breast was again normal, but 50-75% dense tissue remains. Followup in 1 year unless things change. I saw a new RT today (10Feb2015) as mine had left the practice. She said all is well and will see me at year's end after my mammogram. I saw an ARNP for my Oncologist today also for the first time. She also gave me a clean bill of health, followup in 4 months with lab work and then will extend my visits out to longer intervals. I'm so thankful I've had such wonderful care since my journey started just over 2 years ago. I signed up to walk with the radiation clinic's Relay for Life team once again. I've earned a polo shirt for raising at least $1,000.00 in donations ($800. of which I put in myself from a check I got as a refund for my surgery as they resubmitted it 14 months after the fact for less than previously). I put the other $36. into a "rainy day" fund and will find something to buy with it. 5June2015-4 month f/u appt. with Oncology ARNP. All is well and she is very pleased with me. She offered to give me a referral to see another nurse to go over my past 2 years and future needs. I told her I am OK for now and if I feel I need it I will ask for it. She told me she wants to see me in 6 months with more lab work like this visit. I did elect to have an appointment for the consult (survivorship, etc)., is scheduled for August (first opening). 13August2015--attended a survivorship consult and got lots of great info. All this time I thought my first biopsy staged my cancer as 1c but in reality it was a 1a but grade 3. So all in all the breast had 2 areas of IDC, 1 area of DCIS, and 1 area of LCIS. I had a 2 year followup DEXA scan in Sept. 2015 due to the Osteopenia (diagnosed prior to the BC) and being on generic Fosamax. My spine was down -2.6 but my hip was up +4.3. I guess the medication I'm on for the Estrogen+ cancer can deplete bone mass but I'm still considered Osteopenic. I'm also showing some degenerative changes in my back so will need to watch what I do. 1Dec2015-annual screening mammogram, Birads 1 but still 50-75% dense breast tissue, followup 1 year. On a preop chest X-ray for my carpal tunnel surgery something was seen in the left side of chest, the side the BC had been on. 11Dec2015 I saw both the Onc. and RT (appts. that already had been made). The Onc. ordered a Cancer Antigen 27.29 and depending on results felt I may need a PET scan. The RT on the other hand felt a CT chest was the way to go. The CT showed healed rib fractures (#3&4 laterally and #5,6,&7 anterior surface) from the year before after the fall in the tub. The lab work was within the normal range. See Onc. in another 6 months and RT in 1 year unless something else comes up. 14Dec2015-endoscopic Rt. carpal tunnel release. 13-14May2016 walked in my local Relay for Life and earned a plaque for 3rd highest individual in fundraising. 14June2016--6 month followup with Onc. ARNP, was told everything looks good including labs. Will see again in 6 months with blood work prior. 12Sept2016--endoscopic lt. carpal tunnel release. I asked Dr. to put the tourniquet at my elbow which he did. I'll have to be diligent to any changes in the size of my arm. 1Dec2016-annual screening mammo on my Rt. breast. The clinic has a new machine--a 3D and the tech told me it will make reading my dense tissue easier. My mammogram was normal but still 50-75% dense tissue, followup in 1 year. 13Dec16--saw a new RT today and all is well, First he said he'd see me in 6 months but when I told him I'd been on a yearly appt. he said we can do that and changed it in my record. 13Jan2017--6 month f/u with the Oncology clinic with blood work--all is good and she told me to keep doing what I've been doing and will see me in another 6 months. She said my incision looks well-healed and found nothing new on exam. Actually this appt. had been rescheduled by the clinic so it was 7 months rather than 6 but I still have to see them again in 6 months. 20May2017 I walked as an individual in the Relay for Life, earned a certificate for 2nd highest individual in fundraising. 13July2017-6 month F/U with Onc. office. All is well for now, schedule another DEXA in Sept since I'm on an AI med and go from there. Next appt. in 1 year unless something new comes up. 5 Sept 2017 DEXA scan--1)back slight increase(up 3.5) in bone mass, 2)hip very slight decrease(down .5) in bone mass--both are still considered Osteopenic so will need to stay diligent. 8Dec2017--yearly mammogram--birads 2 as the Rad. said I have a small axillary lymph node that is stable, density still 50-75%. 13Dec2017--saw the PA in the radiation clinic and all is well, she will see me again in 6 months. 12June2018--saw the PA for a 6 month followup in the Radiation Clinic, all is well, see in another 6 months. She looked into genetic testing for cancer; I qualify in 1 area but not in another so Medicare won't pay for it. 20July2018--had my yearly visit with the Oncology office and all is well. I just completed 5 years on Letrozole and asked where I go from here. She told me I could go off of it but recommended a Breast Cancer Index test to see if I can indeed go off of it or continue for another 5 years. If I'm taken off of it my PCP will also take me off my generic Fosamax. The only issue may be if there is enough of the original tumor to use for testing as I had that OncoType DX test 5 years ago that also used some of that tissue. I have to see her on a yearly visit unless something comes up. They did have enough tissue to test. I guess my findings are very low risk for recurrence so I can DC the Letrozole and my PCP DCed the Alendronate for my Osteopenia. Will see how I do off of both of these meds. It seems my recurrence rate is around 5% hence the DC of the AI. Like my Onc. ARNP said it still isn't a guarantee you won't get cancer again but the odds are definitely in my favor not to. 10Dec2018--yearly mammogram-Birads 1-negative, still have dense breast tissue but all is OK, see 1 year unless things change. In March 2019 I had my yearly appt. with the radiation clinic, all is well see in 1 year. In July 2019 I saw my Onc. ARNP and all is well there, too, see 1 year unless things change. I did cancel my appt. for next year at the Radiation Clinic as I was told I didn't need to see them any longer unless something comes up. 4Dec2019--annual screening mammogram-no changes since prior study, BiRads cat 2, and category 3 tissue denseness. See 1 year unless things change. 28May2020-went in for my every 6 week port flush. They could not get blood return after accessing it. It was determined to be properly placed and queried if it may have a clot in it. They elected to inject some tPA through it and I had to wait for an hour. They came in at that time and still no blood return which would require another hour of sitting. About that time blood was noted in the line and then started flowing. The nurse noted some clots in the blood and to me it looked thicker than usual. I asked if I should have the port removed and the nurse indicated that would be a good idea. I'm awaiting a call from the Oncology Clinic to see what I need to do. The Oncology ARNP I see agreed it would be in my best interest to remove the port and sent a referral to an Imaging Clinic to get it scheduled. 2June 2020--port removed through the scar from the insertion with a local only by a PA who works at the Interventional Radiology Clinic. Closed with surgical glue I asked for and was given the port in a see through bag. No more every 6-week flushes.
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