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I started writing this post a few times over the last few months but failed to submit for a few reasons; the biggest of which being the length of my story. As I get closer to my PET/CT scan date I feel the need to share my story due to the healthcare system being a shell of what it was pre- vs post-pandemic.
My name is Denise and I live in Mid-Coast Maine. In 2013, I was diagnosed with LCIS and DCIS. I had a lumpectomy followed by external beam radiation. I then took Tamoxifen for 5 years which I completed in November 2018. I've done well, had a biopsy along the way to look at a suspicious finding on an MRI done in 2019 but overall, I cannot complain. My medical team had my back, and I was happy with my care. Also in 2018, I changed imaging centers as the hospital where I was being seen did not yet have 3-D tomosynthesis available. My breast specialist at the time felt that 3-D tomo was warranted in my case. This was also no big deal, there was a Shields imaging center near my home, and they were not only convenient but competent.
Then the pandemic hit. After the biopsy in 2019, I was supposed to undergo a follow-up mammogram 6 months post-biopsy. It was cancelled due to the pandemic, but I was adamant that the follow-up would be done. It was done 8 months post-biopsy, but only because I was relentless that it needed to happen, and my medical team was finally able to get me on the schedule at Shields. My annual MRI in 2020 was cancelled due to the pandemic.
In June 2021, my annual mammogram revealed calcifications near the original lumpectomy site. I was called back for additional imaging, then placed in short interval follow-up for 2 years. Three weeks prior to the follow-up mammogram in January 2023, I was notified that Shields Imaging was closing the site on December 31, 2022. Shields asked me where I wanted to have the current order sent. The Hospital where my oncologist and breast specialist are, now has 3-D tomosynthesis available, so I had the order sent to them. I requested that my previous images be sent there as well and filled out the necessary medical record release forms. This is where everything comes off the rails!
CMMC (the medical group affiliated with Shields Imaging in Maine) did not send the order where I requested and did not transfer my medical records as requested. I discovered this because I also had a follow-up appoint scheduled with my oncologist to go over the results of my mammogram. When I called the office to ask if the mammogram was all set, they said that I was not on the schedule for a mammogram. My oncology office, thankfully, was able to get me on the schedule prior to my appointment. When I arrived for the mammogram, the imaging department had no idea why I was there. They were not aware that I was under short term interval follow-up and unaware of the calcifications that were being watched. They also did not receive any of my previous images. I waited for over 3 hours for the images to be sent and compared. I was told at this time that the calcifications were stable, and I could go back to annual screening. I saw my oncologist shortly after and she agreed with the assessment of the radiologist.
Less than 4 weeks later I discovered an area of swelling adjacent to the affected breast on my side along the anterior axial line along with an area of skin puckering at the outer edge of the same breast. It took 6 weeks to get an appointment with my breast specialist as he was there only once a week. At the appointment, he did a thorough breast exam and reviewed my last mammogram and MRI images. It was reassuring that he saw nothing of concern and felt that I was probably experiencing post-radiation changes, but he ordered a bilateral diagnostic mammogram and an ultrasound of the areas of swelling and puckering.
Three weeks after that appointment, I still had not heard from the scheduling department to schedule the images. I messaged the nurse navigator, and she gave me the direct phone number to scheduling. I called scheduling and they informed me that there was a problem with how the orders were entered and the person to whom I was speaking was going to call the providers to get the orders corrected. The scheduler was supposed to call me back that day; she never did. A week later, I messaged the navigator again. This time she messaged me back with a date and time of the appointment which was now a full 6 weeks after initially seeing the breast specialist.
In between all of this, I received a formal letter from my breast specialist that he was leaving the hospital with a list of breast care centers in the state to transfer my care. Ok, so now I'm in the middle of suspicious breast changes, my imaging center closed and now I'm finding out that my doctor is also leaving. My oncologist is only at this hospital one day a week as she has another practice at another hospital. My care team which I trusted is now falling apart when I need them most!
Back to my story, I was supposed to have the mammogram first followed by the ultrasound all on the same day. When I arrived for my mammogram, the technologist stated that I probably would not have the mammogram done as I just had one 4 months prior. I explained the history and showed her the problem areas. The technologist responded that it would be a difficult area to image and my insurance would probably not cover the procedure. That last part about my insurance really ticked me off, but I kept my cool. She went and talked to the radiologist, and he recommended doing the ultrasound first and depending on the ultrasound images a mammogram can be done if warranted. That made sense to me. The ultrasound did not show anything, and the radiologist's opinion was that the area of swelling was "probably a lipoma", and a mammogram was not necessary.
Knowing that the breast specialist was leaving in 2 weeks, I reached out to the nurse navigator again to ask when the doctor would go over the results with me. The navigator stated that the doctor would not be back until May 4th, which was his last day, and if I wanted to speak with him that I should make an appointment to see him. That is exactly what I did, but I found it odd that I had to ask to have the results reviewed with me.
In the time between the ultrasound and the appointment to go over results, I noticed that the area of swelling increased, there was a second area of puckering and the original area of puckering got deeper and longer. I discussed all of this at the appointment, and he did state that I need follow-up, but he was no longer in a position to order testing as he wouldn't be there to review the results. He informed me that he was not only leaving the practice, but the entire breast health program was also being discontinued! He asked me if I had made a decision on where I would transfer my care. I said yes and informed him where I wanted to go. He said he would take care of the referral.
Another 2 weeks went by, and I had not heard anything from the new office about getting an appointment. I reached out to my oncologist about everything that has happened thus far. I had an appointment scheduled in July, but she decided that she wanted to see me earlier to take a look at the changes. It took another 4 weeks to get in to see her. While waiting for that appointment, I discovered that I had swelling in the supraclavicular fossa on the opposite side of the affected breast. My oncologist did a thorough exam of both breasts and all areas of swelling and puckering. She believes the changes of the original breast is due to post-radiation effects, but she could not explain the swelling of the supraclavicular fossa on the opposite side. She ordered a chest and neck CT with and without contrast along with a whole breast ultrasound. The chest and neck CT was completed within 2 weeks, but the whole breast ultrasound is not scheduled until next week (there is only one facility in Maine that does them; Maine Med in Scarborough).
I saw my oncologist in July to review the results of the CT scans. The chest CT was clear, but the neck CT revealed some lymphadenopathy. She now ordered a PET/CT scan which I have scheduled for next week (5 weeks after my last oncology appointment) It took over 3 weeks to get it scheduled. Fortunately, I have the PET/CT scan and the ultrasound scheduled within a day of each other and my follow-up appointment to review results is a week later (I scheduled the follow-up in July before leaving my July appointment and the first available was August 28th. The delay worked out in my favor).
How did we get to this place that I had to be my own advocate to be seen for follow-up? This system broke down in so many places. It makes me wonder how many patients do not get the follow-up care or testing they need. It is so easy to fall between the cracks of the system and patients are going to suffer the consequences of this break down. I am fortunate that I have the wherewithal to be my own advocate, but how many patients do not?
During my initial diagnosis in 2013, the original biopsy was done in April, lumpectomy in June and radiation started in late August. This time, it has taken 7 months thus far to simply figure out what is going on. That is CRAZY!!
Hopefully, this story ends happily, but I have 1.5 more weeks to wait before I will have results. Thank you for taking the time to read my post. I apologize for the length, but you can't make this stuff up. 🙄
Have any of you experienced the deterioration of our healthcare system?
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Thank you 2tails for sharing all this. It's a very important discussion point. We are sorry of all you've gone through!
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So sorry 2tails, it sounds like the perfect storm hit you. With all the doctors leaving private practices over the last couple of decades, they leave when the contract expires. We just got multiple letters from Orlando Health from specialists my husband was seeing, that they are leaving. I just had my mammogram/ultrasound and there is something there they wanted to follow up on in 6 months, I shortened it to 3 months. Sometimes you have to take the reigns
My story is one of procrastination. If I had continued getting mammograms after my first one at 44 (2004), I would have had an easier road. We were suffering financially during the "great recession" and I got a job in 2010 where I made life changing income, the only issue was it was demanding. I felt a lump in 2011 and went to a new OBGYN. She said it felt like a cyst - I had fibroid cystic breasts. I wasn't even taking time off, so why would I risk that income? (eye roll) I took her word for it and didn't go get my mammogram. I was 50 now and rocking and rolling in sales. I started to get a dimple in the area of the "cyst" around 2013. I went back to the doctor early 2014 and she gave me a surgeon's name, "only because your nipple is tilting in one direction".
Of course I knew it was cancer before I even got the mammogram. The radiologist came in and suggested a biopsy to rule cancer out. But I knew at that point I was going down a scary road. I had an awesome surgeon, she called me at home after the biopsy to make sure I was ok and assured me she would fix it.
Got the call to come in for the results, I would find out later that they only call you in if its bad news. She called it "good guy cancer" because it was grade 1 and ER+ PR+ Her2-. I was sure I was dying, she assured me I wasn't, and I'd have to buy Christmas presents that year!
Of course things got worse after surgery and I had positive nodes, but it's been 10 years and my MO is very optimistic that they did the best and most aggressive treatment. I had a mastectomy, double dose chemo, radiation, and I've been on Arimidex for the entire time.
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Hello All! My story started March 2023 with a routine diagnostic mammogram, which I had been doing for 5 years every 6 months. This time things went differently:( They wanted to biopsy an area in my breast that was a papillary lesion with internal blood flow. I wasn’t super concerned at this point because both my breasts have tons of cysts and calcifications so I was used to odd findings at this point- never to the extent they had to be biopsied though. Biopsy was done and came back atypical cells. Off to the surgeon I went to have a lumpectomy.! Path results came back with DCIS and microinvasion. Back to the surgeon I went for lumpectomy #2 with SNLB. Path results came back extensive DCIS with multifoci invasions and a stupid positive lymph node to boot! Was not at all what my surgeon was expecting. Surgery #3 double mastectomy on May 31st. It’s been a long rough road. I have healed pretty good from my mastectomy, a decision I don’t regret for a moment. Have done 3 of 4 TC chemo treatments. Once completed (Sept 1st but who’s counting… lol) I will move on to radiation and then hormone therapy. This has been one of the hardest things I’ve had to go through in my life I, emotionally and physically. One of my many takeaways from this experience is that I’m way stronger than I thought I was or even could be. I am so proud of myself!!!!! To all the BC warriors out there you will find your strength too- we are all in this together! Hugs!
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Thank you, @homemom and @flowergirl1975! We really appreciate you taking the time to share your stories. 😊
The Mods
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I feel great reading your two stories. I had a talk with my sister who was a denier for 2 years, and so far she is two of three infusions in of taxol/carboplatin. We talked about her port and the fact she never has had surgery. I did not know that. Her two children's births did not cover this topic. It took my cancer to get the conversation started.
I found my lump in late June of 2021. I could net tell, but it ended up being 5.2 cm. Visit to a new doctor, sent by PA to the local hospital which started out with a diagnostic US and with a call that day, to ask if i was OK to get a biopsy too. I was confirmed after these to have breast cancer. The PA suggested a local surgeon and her choice of the City of Hope. I found a breast surgeon under my insurance and made an appointment at COH. About 3 weeks later I met the breast surgeon, who went over all that would be possible for me with all the info she got from the Mammogram, US and the blood test and biopsy. She did not have the Fish test yet, but she said next would be and MRI and CT scan. She gave me the name of the medical oncologist she would send me to. Bingo. Dr. Patel was to the point, kind and compassionate. 4 rounds of AC every 3 weeks. I was scheduled for my infusions and at this time I was asked during this time by a Nurse if i would like to have the genetics test. I said sure.
August 10th i got my port in and August 12th was to be my first chemo. I got a call from my MO to tell me that i was the carrier of the Brca2 mutation. August 14th became my first chemo and i got Taxol/Carboplatin for 12 weeks every week. The original 4 were to follow. After my 1st of the 4, i was hospitalized with pancytopenia. They switched me to an Olaparib drug. A chemo drug that targeted my mutation. By the end of December, 29 days in, i was taken off that drug and moved to have surgery sooner in January. Ha Ha. I got Covid, Surgery was moved to Feb 9th. I had my ovaries/fallopian tubes and left breast with tumor removed. An expander was put in, just in case i chose implants.
Surgery went well. I healed well. But, I ended up with a blood clot on the back of my thigh. i am still waiting for my body to get rid of it. So, I was not able to remove my other breast or the expander while on blood thinners. With a vacation in November for me, my doctors chose Dec 28. I had my surgeon and my plastics doctors. The surgeon moved to another renowned local hospital to lead the women's dept., my plastics doctor worked at that hospital too, so i asked both to work on my right side. 2 doctors, 2 breast. Gratitude my insurance covered both hospitals, both surgeons, both surgeries.
I ended up with a hematoma, so 1 week later i had an emergency surgery to replace my implant. The new surgeon cleaned out the mess and the cavity, they sanitized the implant and put it back in. Then they sewed me up. I was back at COH for this one and my insurance covered it. Whew!! Stayed overnight on all 3 surgeries.
I was on Lynparza, a cousin to the Dec 2021 Olaparib drug. It was not as strong, the dose a bit less. I had that for one year ending in June of 2023. I had Herceptin/Perjeta infusions, 18, every 3 weeks ending end of March 2023. Femara from Feb 2022 till at least Feb of 2027. Plavix for another 30 plus day. A thigh high compression stocking too.
Frozen shoulder, rubbish nail growth and start over after a bald head. All in all, today and the last 2 months I have been almost normal. No more metal taste in my mouth. Oh my. Heaven.
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Thank you for your addition, @katg!
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My story is also one of procrastination. My younger sister was diagnosed ILC at age 50 in 2014. Our father passed away suddenly earlier that year. Our mother had short term memory and other health issues, so it was me who took FMLA from work to care for her while we decided what to do. Neither of our parents knew of her diagnosis and struggles as she later was found to have bone mets. Shortly after my mother passed the following year, my mother in-law started to develop issues. She was delusional, her spouse was in end stage renal failure, so my husband and I went once again into caregiver mode. It was quite the life experience. Very stressful.
In 2017 I had an HMO for insurance through my employer and to keep it I was required to name a primary Doc, which I didn't have. Being back and forth with my mother and father in laws appointments with their primary, I really liked them, so I signed up. In Oct. 2017 I walked out of my first appointment with many orders for tests, and I started failing almost all of them. I was put on medication for high cholesterol and low Vit D. Around this time, I felt my own lump, and just knew it did not belong there. Since I had the order for a mammogram already, I scheduled it, and of course the result was a biopsy needed and I was diagnosed right before Christmas. I try not to beat myself up by not ever having a doctor or a prior mammogram before my age of 56 AND my sister urging me to get one due to her being a 1st degree relative with this disease for 3 years. Now that I'm past it, I do believe my treatment plan would have been the same even if I was diagnosed sooner and at a lower stage.
As far as my care I am with Penn Medicine in the outer burbs of Philadelphia. My BS was the same Doc that my sister had, and we were both very happy with her. I had a very thorough work up. They even discovered LCIS in my right breast which prior test did not notice. My surgery went well. A few days before my follow up appt. I was folding laundry and not wearing a bra. This resulted in a seroma. 3 weeks post op. BS did not drain it and onto radiation I went. That experience was very very hectic and awful for me, but I had to do it. Our local hospital has 1 machine and at the planning session I asked how many patients the 2 ROs on staff were treating and he told me about 48-50. Doing the math this equated to a 13-14 hour day, so as you can imagine there was lots of waiting, appointment times being changed at least 1X per week. One appt, they changed my time and forgot to tell me. They called to see where I was. I also failed the first mapping/simulation session. Thanks to reading this site, I knew to ask if I could have my treatments done in the prone position. I was re-planned, and my 1st treatment was done at 9:15 at night! There were a few techs that came in during my time there as they had never seen anyone in that position. I was fine with it, especially with being treated on my left side. Afterwards, my skin healed fairly quickly except for the time I went to my first MO appt. and I gave them my left arm for a blood test. For about 4-5 months I then had recurring rashes on my upper arm and where the needle went in. It was annoying but nothing serious. Just odd that it kept clearing up and coming back.
During the usual follow up protocol in 2018-2019 and having had that seroma I was getting Birads 3 after birads 3 on both mammo and MRI. Finally had a biopsy and it was found to be fat necrosis. This is still seen today but is duly noted and resolves on a compression shot. Last year I just had to have the extra picture view and no ultrasound. My husband was diagnosed with lung cancer in Oct 2019 and was deceased by May 2020. He was also treated at Penn, and they were supportive and helpful to us. In my devastation about a month after his death, I had another MO appointment. While I went in a few days early to do the lab order, the office called me next door. They said my MO was no longer coming to the location where I was. I could keep seeing her but would be in a different (and further away) office. Or, I can see Dr. so and so, a male MO on staff that was in the hospital room on duty the day my husband died. How strange. I also broke down checking in for the blood work that day when they asked if my emergency contact was my daughter. Seems the gal there already updated my EM contact info. At first, I was really taken back by all this change, however, I was given an option. I just wasn't in my right mind at the time. Turns out I do like this MO fine. He was very compassionate at that 1st meeting.
This year, 2023 is 5 years of taking the AI (anastrozole). MO is on board with the decision to continue taking for now. As long as my bones hold up. Next DEXA is in December this year.
That's about it. Wasn't too long was it? I am glad I found this site when I did. I really and truly gained more knowledge from here than any other place. Thank you for letting me share.
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Thank you @ctmbsikia for sharing your story. 🤗
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ctmbsikia,
What a story. I am happy to hear you kept showing up. I did not do a mammography before my first at 60 when i too found my lump. We are in the right place for sharing our stories and listening to others..
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Hi All, your stories are all so inspiring. Mine is not a tale of procrastination, but rather early detection. I was showing in June 2023 when I found a lump in my left breast. With no family history of breast cancer, I didn't even think that was what it could be, and thought I was maybe getting sick and it was a lymph node. My husband was visiting his family that week and I didn't want to bother him, so I didn't say anything to him until Sunday night, they night before he was due home.
He DOES have a history of BC in his family, so he encouraged me to call my PCP the next day to get it looked at, which started my wheels spinning and my anxiety. I got in that afternoon with my PCP who put in a stat recommendation for imaging: ultrasound and mammogram. I went 2 days later for an Ultrasound, then they asked for the mammogram, then they did a full chest ultrasound again. In that office the radiologist told me they wanted a biopsy as soon as possible because the lump I found looks suspicious. She had a bad poker face, so I asked what the likely hood of it being BC was, and she said she felt there was a 95%+ chance it would come back as cancerous.
Got in for a biopsy of the lump and a suspicious lymph node on Thursday, did not hear back Friday so spent the weekend spiraling and also kind of grieving my life, and doing all the research I could on breast cancer. Which as you know was a good and bad thing. On Monday I was supposed to travel to Nashville for a work meeting, and I made a pact to myself that if I heard back before my flight at 2:30 pm I would stay home. I called that morning and there were still no results, so I got on the plane. 40 minutes before landing in Nashville, I got an alert in my email saying my test result had posted to My Chart, and then spent the 40 minutes googling how to read my pathology report. Stage 2 Invasive Ductal Carcinoma with spread to lymph node. I'm only 32.
The next few weeks were a whirlwind, between meeting a whole new medical team between my surgeon, onco and genetic counselor, various tests and a quick meeting with a fertility clinic. I started chemo on 7/24 and am currently on round 6 of 12 for Taxol/Carbo to be followed by AC.
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We are sorry for what you are here, @miss_meighan, but wanted to say welcome! We appreciate you sharing your story here with everyone. 😊
The Mods
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I agree. I made it through 12 Carboplatin/ Taxol for 12 weeks, then 1 AC. My blood was affected by Pancytopenia. Crazy, I was hospitalized 4 days as I had a fever and the super low blood counts. What happened next was the Medical Oncologists team that gets together to talk about cases that need a different treatment, said I would get Olaparib pills instead. 29 days, blood counts way to low. One month later, surgery.
A whirlwind for sure. I made it through, as my treatment mostly is done after 2 years. You can do it. One infusion at a time.
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Thank you All!
Please keep them coming, and please share all helpful inspirations or insights you can!0
