Waiting to see a surgeon?

PiperGrl

Hi,

After many delays between tests I got diagnosed with DCIS, high grade (16cm nonmasslike enhancement in left breast) . Now the surgeon is going on vacation and cannot meet me until June 14...

My anxiety is already over the top (nipple discharge since February) from wait after wait after wait between tests. I don't know how I can make it yet another month without having my questions answered... (how am I even going to go to work?!)

How long did you wait between diagnosis and seeing a surgeon?

PG

cgifford7

Yes, that would be a challenging wait time. I was diagnosed (also DCIS) on May 12 and met my breast surgeon yesterday, May 20, so 8 days. Is that surgeon your only option? My OBGYN had referred me to a surgeon, but I looked up everyone in network for my insurance in my area, and then got some personal referrals, and ended up seeing the surgeon I chose.

PiperGrl

I'm trying to figure out my options, I just wanted to know how typical those waits are for an initial visit...

LivinLife

I was diagnosed July 21 and saw 1st surgeon later that week. Saw 2nd opinion surgeon a couple weeks later via telemed and surgery on August 31. The medical aspect is not an emergency so a few weeks of waiting will not hurt medically for DCIS. At the same time it is ok for you to honor your anxiety and look for second opinions, find someone you're comfortable with who may be able to see you sooner. It's also possible by the time you find that next surgeon and see them it's not so far from mid-June? Start your process tho and see what you think and how you feel about the process. That will guide you about what you're comfortable with. I've also found things like that give us something productive to do, a sense of control, etc. which can be helpful. please let us know...

cake8icing

Hi PiperGrl: I live in the metro NY area about an hour from NYC, and was diagnosed with DCIS just at the start of Covid(February 2020). I had my surgery the Friday before NYC shut down for Covid (My surgery was March 20, 2020) and it took a lot of advocacy on my part to get that surgery done that fast. I had lost my job one month before my diagnosis and pleaded with my surgeon to take me, because I didn’t know how long I would be able to last under COBRA. Don’t take no for an answer if you feel you need to move ahead quickly, for whatever your own personal reasons are. I wish you all the best in your search for the right path, and don’t hesitate to reach out if I can offer any support.

PiperGrl

I cannot imagine what people diagnosed during the covid shutdown went through!

@cake I am so so so glad you advocated for yourself, it could have gotten cancelled otherwise!

My primary doctor is referring me to a genetic counselor and a plastic surgeon (due to the size of the area I most likely will have a mastectomy... which will be so so different from my current i cup breasts ) so we can get moving on those areas. I can not thank her enough for her support.

I think part of my issue is the constant reminder of my nipple discharge telling me something is really wrong.

I know that medically the dcis can wait, I just want to make sure my emotional state is ad strong as possible for the surgery, as I am the worst with needles, blood, heck the smell of hospitals has made me faint in the past...

exbrnxgrl

piper,

Let me offer a different perspective. DCIS is not an emergency. I know that it is causing you anxiety but your anxiety is not connected to the reality of DCIS. Even pre-COVID, longer waits for surgeries were not uncommon and had no effect on the patients disease. If you like your current doctor, the wait should not be an obstacle. June 14 is just around the corner. Finding a doctor who can see you a week earlier will make no difference. Take care.

Oxbury

I was diagnosed with low grade DCIS on 7 May, and will be seeing the plastic surgeons on 11 June. I also have another MRI on 14 June. I think that's pretty swift in terms of how fast things move in the public health service here. I don't expect the surgery will be going ahead sooner than August - personally I'm hoping they can fit me in in November when I can afford to take the time off work.

I might go and see a private specialist in the meantime if only to sit down with them and get answers to all my questions as well as a better understanding of what all this means. Maybe it's worth you also doing that, if only to ease your mind.

PiperGrl

@exbrncgrl

I haven't met the doctor. While I understand that DCIS is not considered invasive, it is difficult not to have anxiety when I'm soiling my clothing every day in blood.

I don't think I should need to justify my anxiety though, but it's rather aggressive to say that losing my breasts should not be something to be anxious about.

I can read, so you can be certain that I know it's not considered invasive. A condition doesn't have to be life threatening to justify being anxious about it.

Rah2464

PiperGrl - I remember very very clearly how I felt waiting those weeks between diagnosis and surgery. At that time, my diagnosis was DCIS as well (I got an upgrade at final pathology) but I still was so very anxious to get it all out of me. As LivinLife so eloquently said, honor your anxiety and do whatever constructively you need to do to mitigate it. I tried to spend my time making myself as healthy as I could for my surgery by getting daily exercise. Anything to keep my mind from spinning. We all react differently and there is no judgment anywhere, just understanding for how it might be feeling to you. Sorry you are having to deal with all this, and sorry the times between diagnosis and surgical removal are longer than what you want. Hugs

Jetcat

I would probably look for another surgeon in your circumstance unless you have a prior relationship with this surgeon or she is highly recommended with no other alternatives. There will likely be another wait from the time you meet with her to your actual surgery (for me it’s been a couple weeks) so your anxiety to get the process underway is very understandable. Will you get an appointment with the plastic surgeon in the meantime? Perhaps he/she could recommend a surgeon. When I had to have a mastectomy for DCIS last spring, the breast surgeon who everyone recommended was out on leave. I met with the “second choice” and liked her instantly. She did an outstanding job on my flat closure and I would choose her again in a second. Best wishes to you.

exbrnxgrl

piper,

I certainly don't mean to diminish your anxiety or negate your feelings. I apologize if you felt that way. You are concerned about timing and I just wanted to offer a different perspective.

sunjetta

I was diagnosed with DCIS on 3/24/21 and had my first appointment with my surgeon on April 6.

PiperGrl

Thank you everyone, I appreciate hearing different experiences. My PCP was able to help me out getting an earlier appointment (June 1st), she rocks. What a wild season in life!

Moderators

Welcome, sunjetta! We hope this community can be a source of support for you! And PiperGrl, that's wonderful to hear!

The Mods

Rah2464

Thats great news PiperGrl!! It is wonderful to have such supportive medical professionals! BTW my entire team are women from PCP to surgeons to Oncologist

LivinLife

Welcome sunjetta! Great news PiperGrl!

Dogmom1971

I'm so happy that you were able to get an appointment sooner! I was diagnosed with an invasive carcinoma with associated DCIS on March 19, and was lucky enough to score an appointment with my surgeon the very next day. I had a partial mastectomy and lymph node biopsy in mid April. I start radiation on June 1st, the next step in my treatment. I completely understand the anxiety....it seemed with each test and appointment I had I got questions answered but more questions came up.

You've got this, warrior!