Surgery Delayed Now

HH25

Late January I had a left partial mastectomy. The margins were dirty and the dcis was found to be extensive with comedo necrosis so I was referred out to have a bilateral total mastectomy with spacer placement. Since my consult with both surgeons, I've been waiting for a phone call about the surgery date. Now all the virus madness is here and I was told by my surgeon today that my surgery is delayed indefinitely and that I would be starting Tamoxifen immediately until mysurgery date. Anyone else going through the same experience?

KARW41

I’m new and have DCIS without any treatment yet. It took me since October to get diagnosed (due to the VA being slow when I moved 50 miles and appointments were tough to get). I now have health insurance again and the doctor’s office said I have to talk to her by phone for a consult, and it sounds like they won’t be able to treat it due to the virus. I’m not doing Tamoxifen since my mother did that and Arimidex and her life was miserable with side effects and pain and she got breast cancer three times anyway. I guess I am waiting for some kind of surgery. (??). I hope they can find a way to segregate and still treat and care for people with cancer.

Lostchick

I was diagnosed with lobular carcinoma on 2/20. I met with surgeon and plastic surgeon and both seemed to think I could have a bmx with reconstruction done by the end of March/beginning of April. I didn't hear back for a long time. I called them last week and asked if they were delaying surgeries. They said no and that someone was working on the surgery schedule that day and I should hear from them soon. Still nothing. I really want to get this taken care of but understand. I'm pissed that all of this covid19 craziness is happening right after I get diagnosed and now I feel like I'm falling through the cracks. I just want to know something! but no one has communicated with me for weeks. I have no idea even what stage of cancer I'm dealing with or anything. I feel like I'm in limbo. I'm sorry you both are dealing with this too.

orangeflower

My implant surgery might get delayed. The doctors office told me that the hospital has placed all reconstruction surgeries on hold. I had my mastectomy in late February, and had to get a second surgery to remove my nipples because the margin wasn’t clear. I’ll be going to the expansion process next, but I am scared that I won’t get the implants when I’m supposed to. Your situation sounds scarier than mine, but I empathize with your anxiety.

BCat40

On 2/4 I was diagnosed with stage 1 ILC plus separate large area of LCIS/ADH which surgeon said should all come out and was too large for a lumpectomy. I opted for BMX plus reconstruction since the LCIS raised new cancer risk on the other side. I was scheduled for the surgery this past Weds 3/25, surgeon called on Mon 3/23 and said they could not do prophylactic side at this time but could offer unilateral mastectomy alone or unilateral mastectomy plus reconstruction on the one side. Just mastectomy I could get out same day, no hospital stay. With reconstruction I would stay in the hospital one day. It was noted that there are COVID patients in the hospital but are in a separate area. I was concerned that with reconstruction my expander appointments and ultimate expander swap to implant would be put off indefinitely, and if I did just mastectomy I would be losing the skin I wanted for reconstruction later. I asked if the surgeon could do a lumpectomy even if a large area had to come out, to save the skin for proper reconstruction later. She agreed and that's what we did. I'm relieved I at least got the cancer out for now, even if the area is not going to look great for a while.

My advice is for people to be assertive about getting answers from their doctors about possible options in triaging their case.

If you get offered just Tamoxifen, I would push back that it has a less than 50% efficacy rate.

BCat40

I'm not doing Tamoxifen either as my mother also used it and her endometrium thickened so much she had to have a hysterectomy. I pushed back on the suggestion. I don't like how women are "told" they are going to take it rather than asked.

December11

I was diagnosed with stage 2 Her2+, hormone negative IDC with one positive lymph node and three tumors in my left breast in December, started Perjeta, Hercpeptin, Taxotere & Carboplatin January 3. Just had my fifth treatment friday and had to see a PA I've never seen before because the PA I normally see wasn't working that day. I only have one more treatment to go and asked when I was going to be referred back to the surgeon to schedule the left mastectomy and was told that since the CDC considers it elective, they are not doing scheduling at this time and my surgery could be delayed. I know the earliest I could have the surgery would be May 29 because of chemo, and maybe the COVID will be gone by then. But I can't believe they are not scheduling surgery to remove cancer because of the COVID where I live. There is only 1 person diagnosed with COVID in the county where I live and where the hospital is where I want to have the surgery. In the county where the hospital is that I get treatments, there are 5 people diagnosed with COVID. I hope this guy doesn't know what he is talking about.

MinusTwo

December - it doesn't matter where you live. Medical facilities are on standby for emergencies. But if I were you I would talk to my MO and my BS. You'll have some testing to see if you had a pCR (complete response). If so, I expect surgery wouldn't be quite so urgent. But HER2+ is fast growing, so I'd expected surgery to get scheduled if the chemo didn't act on the tumors - at least on the left.

Moderators

BCat40, we are very glad that you were able to find a surgical solution at this time, even if it wasn't what you had initially hoped for. Thank you for joining us here, and sharing!

December11, MinusTwo is correct. You should be able to get it scheduled. Definitely continue to follow up, and ask for any tips here!

BCat40

Thank you. I am a bit concerned as I'm thinking it could easily be 6 months before normal surgeries resume and normally with just a lumpectomy I would be sent for radiation. But if I am doing the full mx later I don't want to expose myself to radiation. I suppose it depends on the characteristics of the tumor (don't have back yet) but how long can you go with no radiation?

nicadams98

I have to wait for treatment also.

I had a mammogram on 2/12/2020 and was called back in for a 2nd one because they found Calcifications in my right breast and changes from my last mammogram. I had the 2nd mammogram on 2/17/2020 and they said the calcifications are in an area that is 1.5 CM and are usually benign and to come back in 6 months for another mammogram so they could see if there were any more changes. I told them due to a divorce, I was losing insurance in April or May. They called me 3 hours after I got home and decided to go ahead and send me to the breast cancer specialist now.

I saw the breast cancer specialist on 3/9/2020 and he did an exam and said these are usually benign. He said to go have another mammogram in 6 months and then see him after. The next day they called me back and said the Radiologist wants a biopsy now. So I had the biopsy on 3/19/2020 and they had my results on Monday 3/23/2020. So it turned out to be breast cancer, Ductal carcinoma in situ, or DCIS stage 0. He gave me 2 options: Lumpectomy and Radiation and Tamoxifen for 3 years or a Mastectomy. I told him I wasn't doing a Mastectomy for something so small, if it comes back then we will deal with it. We set the surgery for Friday 3/27/2020.

Well, thanks to Covid-19, I'm having to wait for my surgery also. The Dr was ready to do it, but the Outpatient Clinic is the one who cancelled. The Dr has no idea when the surgery is going to be, but he is trying to set it for a month away, but may have it pushed back again. So now since I have to wait, I was given the Tamoxifen to start taking before surgery. This really does suck since I will probably lose my insurance before the surgery is done and then we still have radiation to do after.

Moderators

nicadams, we're sorry you are here for this reason, but we're sending you a warm welcome to our community here at BCO! We hope you've found this to be a supportive place to share and vent while you wait.

We wanted to let you know that we have a forum for members just diagnosed, in treatment, or have finished treatment for DCIS (Ductal Carcinoma In Situ). Feel free to go there and introduce yourself also, we know they'll welcome you with open arms! Please come back to let us know how you're doing!

Best wishes,

From the Mods

Moderators

Interview opportunity:

NPR in DC would like to interview someone who has had to delay their breast cancer surgery because of COVID-19 and how that has affected their care.

If you're interested in participating, please email Ella Chick at echick@breastcancer.org by Monday May 11, 2020. Thank you!