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Dec 11, 2018 09:49PM
Dec 11, 2018 10:37PM
Hello to all. I hope you're doing okay today. Thank you so much for sharing your journeys as well as about co-occuring autoimmune conditions and the decision making associated w/hormonal therapies with autoimmune. I'm brand new to this forum. I'm so grateful to have found this community.
I'm 55. I had left mastectomy 4 months ago. I was diagnosed in June after routine mammogram and subsequent needle biopsy. I had 2 small areas of malignancy separated by several centimeters of tissue. I decided on mastectomy rather than lumpectomy hoping to avoid radiation and chemo (if no node involvement) due to what would be almost certain complications from radiation as well as chemo given my autoimmune status of Sjogrens syndrome and discoid lupus resulting in very atypical tissue response to surgery and other treatments.
My autoimmune status has complicated my recovery, and is catalyst for woeful decision-making regarding tamoxifen. I already experience significant quality of life issues associated with autoimmune disease. I sought a second opinion oncology consult due to my negative surgery experience. I didn't trust myself in choosing a good fit because of my surgery experience. See verbose description below. My apology in advance of the 'core dump' that follows. It's taken me 4 months to emotionally process all the added stress to bc and mastectomy journey due to my choosing surgeon with a very 'problematic bedside manner', in addition to multiple administrative blunders associated with surgeons office mgmt, as well as hospital administrative error. This is the first time I've been strong enough, emotionally, to reflect on my journey and put it into complete frame.
One lesion DCIS/7mm/grade 2, one IC/3mm/grade1, 1% growth rate/KI67, ER+/PR+/HER2- Sentinal node biopsy - 7 removed. No lymph node involvement found. Surgeon never explained surgical approach with nodes except to comment, stoically, that I had more sentinal lymph nodes than average. The surgical site is a mess under my arm. Surgeon never gave me a heads up that I could expect excess tissue under my arm due to having large breasts. I know, now, after consult with other doctors that the surgeon clearly knew that a 'dog ear' was likely in my case. It's not too much to expect your surgeon to inform on those post surgery potentials. I thought something had gone wrong with the tissue under my arm. It was an emotional breaking pt for me after all the unexpected/unnessessary negatives I'd experienced up to that point. This was same day that my lymph node pathology was mistakenly posted on patient portal without any heads up. When contacted about the unimaginable mishap, the staff member's response was to remove the report from view until surgeon could give the results of node pathology on the scheduled follow up. To her credit she did apologize, but the surgeon never mentioned it. The wait to find out if nodes are impacted is beyond agonizing. Then, to see what 'seemed to be' node pathology cavalierly posted without any forewarning is just crazy-making. What if my results hadn't been what they were and that was the way in which I learned...on a computer screen? Omg. I still can't believe that error was made...and worse, the surgeon never brought it up. She needed to have addressed it, said she regretted the stress it added. In addition, if only my surgeon would have respected my journey enough to explain that I might need an additional procedure to address the painful 'wad' of skin projecting into my inner, upper arm. It would have taken only a few minutes to explain that potential. I would have been better prepared. It would have at least saved me from believing that something was wrong.
I experienced serious post surgical hemmorage that likely began immediately after the surgeon closed the mastectomy incision. It took 5 hrs for hospital to set the OR back up to handle the emergency. I went unconscious a few hours after being placed in my room, due to blood loss. I was fine, it seemed, after surgery. My husband left to feed pets with plan to come right back to hospital. No one caught the hemorrhage. My bp was dangerously low 76/47. It was very scary for me and my family. Oddly, but not surprising, surgeon never mentioned the complication after going back into surgery to address multiple bleeds. So, the day after emergency surgery I asked the surgeon if there was any experience with that particular complication in the many, many mastectomies performed, and the response was a stoic “no". After that brief exchange, the surgeon interacted with me as though the hemorrage never happened. She did not even bring it up at follow up in the office. I theorize the surgeons 'personality type' would not allow reflection on my having tried to inform 3 months prior, at first appt, that I tend to have complications with 'any' surgical procedure. The complications can range from extreme swelling, infection, to hemmorage. I even inquired about banking my blood. I think surgeon thought I was being overly cautious. I always felt dismissed in this surgeon's presence. That sense as a patient of being marginalized should never occur.
Since then, it has been affirmed by other patients comments as well as a few clinicians who are familiar with the surgeon that there is an issue with bedside manner, as well as interacting with coworkers in an aloof/insensitive manner
Good news is after transfusion-worthy anemia/hemocrit in lowest 20's, I have battled back within normal hemoglobin levels. It took almost 3 months for those levels to normalize.
I regret not listening to my intuition early on telling me the surgeon was not a good fit. In hind sight, I realize my decision making was compromised by feeling overwhelmed with shock re diagnosis, and further complicated by a beloved doctor telling me that this surgeon was highly regarded. So, I overroad my typically dependable intuition by telling myself that this surgeon was perhaps just atypical in the area of personality type. But, the signs were all right there in front me that there was a significant deficit in information transfer, empathy, and demonstrated compassion. I regret that I did not move on to choose another surgeon. I felt paralyzed after my bc diagnosis. There were many signs I needed to consult with another surgeon. My first appt, I was told surgery would be schedule within abt 4 weeks. 2 months later, after multiple excuses by office staff member as to why I had not been added to surgery schedule, I found myself, literally, begging to be scheduled. I had cancer in my body. It was almost 3 months before I could get a surgery date, on a Saturday. Unnessessary schedule mishaps due to administrative errors, delays in getting calls returned, complications of some kind that regarded communication between the two pathology labs handling my biopsy samples, hospital admission wrought with foul ups - no personnel there to receive me/check me in, discharge orders not complete due to lack of follow through by surgeon, and a variety of other issues were added to the already beyond stressful journey from the very beginning to the last time I went in for follow up. I have since gotten another surgeon. With that list of negative experiences, I will add that it appears the margins were very good, to the surgeons credit. And for that I'm so grateful.
I'm trying to make a decision on tamoxifen. I have consulted with 3 oncologists. I can't get a consensus. The MO whose disposition I really like, offered on first appt, regarding my comorbidities, “I think tamoxifen would be very bad for you". Then, when my husband and I brought the subject up on 2nd appt, he walked his statement back seeming uncomfortable when we repeated what he's said about hormonal therapy and he quickly redirected dialogue with the declaration, “I'm not a homeopathic doctor". Wow. Never thought he was. Never articulated anything that would give him the impression that we were looking for homeopathic doctor. So, that statement really threwus for a loop. He's a really good guy and we believe he is also a really good doctor. But, I get the sense that some MOs stress over, or imagine scenarios where their patients blame them if cancer reoccurs. ? A lack of consenus, after meeting with 3 MOs, is frustrating. I have a decision to make. I think I have made it, though.
My quality of life, especially now with added fibromyalgia developed post surgery, is a huge factor in that decision making. Honestly, I'm not surprised about that development given the added stress of the negative experience I had with surgeon and hospital.
In so many different areas, I've learned more since finding this site than in the previous 6 months. I am open to and appreciative of any feedback/guidance.
I am so moved by your journeys. I'm inspired by your demonstrated strength and compassion. I am sending good energy, hopeful vibes, and virtual hugs to your spirits.