Second Opinions Matter

ClearCreek1

I have seen the same doctor for 20 years and have had regular mammograms, ultrasounds, and good overall breast health but yet diagnosed with a 5 cm DCIS about 4 weeks ago. I had every confidence in my doctor and assumed I would follow her recommendations. After the "family consultation" I had misgivings. 15 minutes of the hour consult was taken up with a history of breast cancer. I was given options; lumpectomy, mastectomy, or double mastectomy (for symmetry). I was floored. I assumed since the microcalcifications were new and not on my last mammogram that the DCIS would be relatively small and fixable with a small incision (lumpectomy). Not so. 5 cm. I walked out of the consult with more questions than answers. So asked Dr. Google and thoroughly scared the bejeebers out of myself via too much internet research. I called my "nurse navigator" to help answer questions. During the appointment she highlighted areas of a book that discussed breast cancer. I had specific questions regarding my health that she could not answer. Called the doctor's office to request a follow up consult in order to answer questions. Made an appointment for a week out. Still under the impression that I would ultimately follow the advise of my surgeon. The problem was she didn't give me recommendations but options with no specifics to me. I decided to follow the advise of many on this board and seek a second opinion. Called Monday and got an appointment for today. Jumped through hoops with original doctors office and imaging center for mammogram and mri imaging. I kept thinking where is the guidance to help me navigate this scary event? Arrived at 2nd doctors office and ended up waiting a while. The 2nd doctor was having an emergency and he kept going in and out of the exam room and apologizing for the delay. When he sat down with me he was short and to the point. Due to size and location of the DCIS he did not feel I would have a good aesthetic outcome. I question the swiftness with which the microcalcifications had appeared to which he agreed it was very concerning. I may have read something in his answer but it seemed he thought the DCIS was probably not caught as it should have been. In fact some of my mammogram reports from 2018 showed an abnormality but was discounted with a follow up mammogram. Moving forward I asked him if he thought a nipple sparing mastectomy was an option since I am 56 and have gravity issues. He didn't initially agree but upon the exam he assured me I would be a good candidate. I decided before I left the office that I would proceed with the new doctor and have a mastectomy rather than a lumpectomy (I was leaning that way prior to seeing him). Even though he was rushing in and out of the room he answered all my questions honestly and matter of fact. He apologized profusely for not being able to sit down with me for a length of time. As I was waiting in the hall to check out he stopped and told me and my husband that breast surgery was his life and he cared about each one of his patients. His goal as a doctor was to make sure the best possible outcome was achieved for every patient. That last touch was missing from my original doctor consultation.

LivinLife

I'm so glad you feel reassured and confident with the second opinion even if initially put off by waiting and his hustle and bustle of busy-ness - that is sooo important! I'm glad he took the time to circle back to you and your husband just after the appointment too. I have the impression you may not have felt as assured otherwise...?

It is possible the DCIS is 5 cm and it may turn out that part of it is something else. I was diagnosed initially with nearly 3 cm of DCIS on diagnostic mammogram, which turned into 5 cm of DCIS with some non-mass enhancement on breast MRI. Turns out post-surgery the Grade 3 with expansive comedo necrosis was correct throughout. However the area of DCIS was only 1.2 or 1.5 cm (I forget at this point) and the rest of the the 5 cm was lots of benign and precancerous stuff. Focus on getting the surgery you are most comfortable with, trusting your surgeon will do what he needs to do and then whatever follow-up treatment you need. Then it is about seeing if all of that pans out over time - you've already seen the mix of experiences on this site - you can only control your part of this equation so show up as best you can. You have a support and info. on this site. I hope you have supportive friends and family too - so important - doesn't have to be a large group though a mighty group helps a lot!

smc123

I don’t know if this is helpful but I wish when I was choosing my MO I had asked their stance on follow up care after treatment was over. Once, treatment was over my MO and treatment center does not yearly scan. Their position is scanning does not reveal evidence of cancer returning any earlier than just going by how the patient exhibits symptoms. But, my MO has been completely dismissive of my aches and concerns. I’m the type of person that yearly scans would put my mind at ease. A friend of mine goes to the same treatment center and in six years never had a follow scan and ended up with bone mets. It turned out it was in her lymph nodes and was missed. Good luc

msphil

hello sweetie i did have 2nd opinion it was recommended and it was the same. I went with 3mo chemo before and after Lmast wanted lumpectomy was preparing our 2nd marriages at diagnosis. We got married after chemo completion then 7wks rads and 5yrs on Tamoxifen. Praise God i am this yr a 26 yr Survivior and our 26 yr Anniversary this pass May. Hold on sweetie. Positive thoughts that i will get thru this and Hope got me thru all. msphil idc 0/3 nodes stage 2. Lmast with reconstruction but my body rejected the implant as foreign body had temp 103 rushed to hospital removed wear prothesis no problem. Hope.

Rah2464

Clearcreek the dirty little secret is that imaging is not perfect. Cancer can hide for quite a while depending on so many factors. Some cancers hide from 3D mammograms and ultrasounds for years (mine did). Different types of imaging can also misrepresent the size of the cancer (on an MRI they thought my mass was over 2.5 cm, turned out to be 1.3 cm final). You only know part of the story at this point, final surgical pathology will tell you all. The absolute great news is you have found it, you have a plan in place to begin to address it, and you have found a surgeon in whom you have faith. The decisions are overwhelming and I am very glad you found a surgeon who gave you their thoughts about physical and cosmetic outcomes. That is very helpful during such a high stress time. Wishing you the very very best.

ClearCreek1

Thanks to all for their responses. I went back for a follow up with the second surgeon and this appointment was much calmer. Unfortunately my mind was blank so didn't have any follow up questions. I think newly diagnosed folks suffer from information overload and it muddies the mind instead of helping the decisions. I have surgery scheduled early January for nipple sparing mastectomy with expanders and eventual implant on the right with symmetry planned for left breast BUT I am second guessing. Not about the mastectomy but if I should do the bilateral. Couple reasons for my indecisiveness. I have a friend who was a mammographer for 25 years. She gave me some points that make me want to ask more questions of the surgeon although I am not scheduled for another consult prior to the surgery. One of the points was perhaps more difficulty in diagnosing future cancer in the intact breast due to scar tissue. She told me scar tissue prevents good mammograms and can hide/produce microcalcifications so any future questionable mammos on the left would almost certainly require a biopsy. Ouch. She also repeated what many on this site have stated...it's the luck of the draw on how the mammogram is read. If the breast isn't turned correctly, flattened enough, or if the tech isn't as versed as they should be, etc. etc. there will always be anxiety about a mammogram findings. The other point she told me to clarify is if I have nipple sparing mx will I have to continue to have a mammogram because of the tissue left under the nipple? I understand I will have different scarring from the mastectomy than the symmetry breast but I do have issues with wide or possibly even keloid scarring (ectopic pregnancy surgery scar was raised and rigid for 20 years. That scar is mostly white now but very wide). I have concern about the significant scarring both aesthetically and for imaging purposes. Anyone have input on that subject? I was under impression that I could avoid long term medication if I had a bilateral but maybe not the case? HER2 +. More input appreciated from the community.

ClearCreek1

Livinlife - how did you make the decision for the bilateral? I have had folks say a double is excessive based on stage 0 but the grade 3 is very bothersome to me. How was your recovery time for the double and what is your monitoring routine going forward?

LivinLife

Yes, ClearCreek it was the Grade 3 and comedo necrosis that sealed it for me. This was on the left side. The right breast - I already had multiple callbacks for several years with two stereotactic biopsies that were sooooo uncomfortable - table - neck and ribs... First though I was not a candidate for radiation b/c I have scleroderma. I knew this going in. So lumpectomy was not an option and my surgeon was clear on that (esp. given post-menopause). Then, given mastectomy for the left breast, issues I've had with the right, the need (as much as I can control any of this....lol) to minimize future surgeries as much as possible (slow healer- history of wound infections last two years), extensive history of cancer in my immediate and extended family (including lots with breast cancer), size of my breasts and the unkindness of age and gravity.... that likely nearly sums it up - BMX was the only way for ME to go. I initially thought that was overkill though as I read a lot of posts on this site and thought about my situation I knew BMX was the right choice for me in about 10 days or less. I knew before diagnosis reconstruction was never an option for me due to autoimmune and healing issues. I've never had any regrets. If anything not lugging large gravity laden breasts around has improved quality of life, made exercise and even sleep easier.... It's still weird looking in the mirror though not sad - just obviously different.. Hope that helps....