Diagnosed six months ago and still no treatment

jewellsflight

I was diagnosed six months ago with dcis grade 3. I have chosen a double mastectomy with reconstruction. However I have had no treatment since diagnosis. They sent me home from surgery due to an infection in the kidneys. I'm totally worried that it has become invasive. My doctor barely talks to me. Should I be worried?

ElleElleBee

I was diagnosed at the end of June with IDC and it's positive in at least one node (that's how I felt the cancer) and my surgery isn't until September 26th, three months later. I thought that was absurd, but they keep telling me how slow moving breast cancer is and because I'm not triple negative, they said there isn't any reason to rush. There isn't even any further testing to do. My appointment is just that far out. Drives me nuts but I'm just taking the time to clean the house and get everything set to prepare for being out of commission for a while.

Lumpie

Jewelsflight & ElleElleBee: I am no oncologist, but the delays you describe concern me, especially given that ElleElleBee's cancer was invasive at Dx and you are both grade 3. I believe that there are some instances in which it is appropriate to "watch and wait" DCIS but I am guessing that grade 3 is not one of them. Have they given you a reason for the delay? Are they waiting on test results (like Oncotype or Mammaprint)? It is my understanding that surgery should be scheduled "as soon as possible" (within 30 days) and that chemo (if indicated) should follow in 30 to 60 days. Here is a BCO article on the topic:

http://www.breastcancer.org/research-news/20140220...

Here are a couple of other articles: http://ascopubs.org/doi/full/10.1200/jco.2013.54.3...

https://sciencebasedmedicine.org/you-have-breast-c...

Is it possible for you to seek out a second opinion or go to an alternative facility for care? Or maybe march into your doctor's office with research in hand and ask for an explanation? (Not everyone's style, I realize, but as a friend of mine indelicately put it, "if they screw up, you're the one who's dead.") I hope treatment goes smoothly for you!! Take care.

Michelle_in_cornland

In my recent research I was reading about how the size increases after the first 30 days of diagnosis. Most places push for chemo or surgery within those first 30 days. I would definitely be pushing for something sooner. Those wait times are ridiculous.

RemyMis

I can relate to both of your experiences. I was diagnosed July 3, 2017 VIA US biopsy with IDC clinical stage 2, pr/er+, her2- Radiologist recommended MRI which I did and also had visit with BS, then had to wait to undergo second MRI biopsy. Finally got in with geneticist and the PS. PS said he will talk with my BS and then they will schedule. Have no follow up visits with anyone. It is frustrating to go through all the testing and waiting with no follow up visits. Have no idea when I will be scheduled. And with no visits scheduled, there is no opportunity to ask additional questions that come up. The geneticist appt was a joke. I spent 5 minutes tops with the doctor, watched a 30-minute video I could have watched online, then had blood drawn and was told it will take 3 weeks for results. The entire process is frustrating. I've also been told it has probably been there for a while so waiting isn't an issue.

Lula73

from mammogram to surgery for me was 4 months. But like Remy wrote above, there were biopsies, MRIs and more biopsies during that timeframe. From final scan/biopsy results to surgery was about a month. I had BMX with immediate DIEP reconstruction in NOLA at the Center for Restorative Breast Surgery.

ElleElleBee & Jewell-where are you going for the surgery? Is the delay a result of ORs being booked up or the surgeon's schedule? I'd worry I was put on the back burner. With that being said if your cancer isn't aggressive and another woman's is and that's how they prioritized I would also understand. (Like the ER taking the heart attack, stroke or head trauma case before the guy who is there with a broken arm/leg/etc). It doesn't hurt to speak up and ask questions - even question the doctor - and ask for further clarification if the answer doesn't make sense to you.

Rrobin0200

I personally think that's absurd. My Dx was 3/6/17, and my bmx with reconstruction was 3/31/17. I would define felt keep "bugging" then to up your appointments or at least put you on a cancellation list.

YazMar74

The extended wait does not sound right - my experience was totally different. I had a routine mamogram on April 14 which resulted in Birads 5, I had my breast surgeon call me immediately to see her, my obgyn called me to make sure I had already spoken to my breast surgeon, and my general practicioner called me to make sure I was contacting the doctors. I had my biopsy on April 28, officially diagnosed on May 2, my first lumpectomy on May 18, did not get clear margins and had microinvasion and was schedule for the second one June 18, started radiation treatment on July 18, and start with hormonal treatment on Sept 1. Already have a follow up with the breast surgeon scheduled for 3 months, radiation oncologist for a month, and the medical oncologist for 6 weeks after starting the pill. This is such a worldwind journey - the wait is the most excruciating - and I cannot imagine having to wait so long.

Lisey

yes, even with TES and having to get both the PS and BS together for surgery I was in within 4 weeks. Studies show that once you biopsies (puncturing the tumor) there is a window for best treatment times, definitely before 90 days.

Yvonne55

go to another dr. Something is wrong

Falconer

Like Lula, my dx was months before my surgery. I had an us and mammo after bleeding and finding a lump in May 2016. After all the biopsies and doctor choosing, I finally had an mx on August 29 2016. My BS wanted to schedule me on August 16, (sitting in her office on a Thursday and suddenly pushing me to have surgery that Tuesday), but my daughter was off to her first year of college and I really wanted to be there for her, as she was moving on the 23rd. Anyway, after all the waiting waiting waiting all summer, what was another two weeks? My point is that I don't think waiting is that uncommon, even though it's awful. It's so stressful to go through the tests and to worry. I feel for you, as I understand your confusion. I have few doctors nearby; not always easy for everyone to switch to another dr.