Has your treatment been delayed due to COVID-19?
Tell us your story below.
Comments
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Nope. I’m getting my Herceptin treatment right now
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yes, mastectomy postpone 6 weeks to 3 months or longer.. unknown at this time.
My lumpectomy turned out to be a much larger tumor than Imaging showed. Which showed 1-2 cm , surgery pulled 6.7 cm and still had active margins.
The risk of covid is apparently more than the risk of waiting, what strange times we are in.
Waiting on oncotype for next steps. I guess the comfort ship isn't for this type of surgery. Isn't it supposed to be covid safe?
I don't want a mastectomy, apparently I need it. Surprised this is being considered elective.
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Just got my MRI guided core biopsy results for a non-mass enhancement seen on MRI last month.
It says “Markedly atypical ductal hyperplasia, which also involves detached fragments of intraductal papillary lesion, worrisome for (low grade) DCIS."
I was advised to arrange for surgical excisional biopsy. Upon calling this morning I was told they don’t believe they're doing them at this point due to COVID-19 and that someone would get back to me. They said this may need to wait a 'few weeks or months as the protocols are continuously changing".
I'm a wreck and want this out.
As a matter of fact.. I would be happy with a bilateral prophylactic mastectomy. I'm 47yrs old with very dense, fibrocystic breasts and have had at least 10 biopsies. They've found calcifications 3x and on one occasion had to abort the stereotactic core biopsy after only 2 small samples because they couldn't get me numb. But they were content with the benign findings of those 2 samples - despite aiming for 16.
I can remember the last time I had a mammo that wasn't recalled for more views and 6mo follow up or biopsy.
This is terrorizing! I want them GONE. My mom had DCIS at 49. Her mom's sister had IDC and was dead before 50.
I don't want to wait another minute to get this out of me because *I know* it's worse than this report says. I just KNOW. 😔😔
Sorry for the rant
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I had a double mastectomy on Friday 3/27 but I was called the day before surgery and told that my reconstruction is delayed until further notice...few months possibly
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Dear Members,
We are so sorry that you are experiencing these delays and can only imagine the distress that waiting can bring. We no longer need volunteers for an interview on this topic with the LA times as we have had a number of people who expressed interest in the story. Nevertheless we hope that you will continue to post your experiences and we encourage others to do the same.
The Mods
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Mastectomy on 2/27. All TE fills were scheduled starting on 3/20 for 6 weeks. Starting getting calls to cancel the first few weeks with hopes they would get me in for at least the last 2 on the schedule later this month. The call came yesterday that they were cancelling all appointments and could not reschedule until further notice. I am very uncomfortable. The scar is indented due to extra skin they had to take for margins. I have two severe points that rub on my clothing. Right after surgery, the PS assured me the first fill would help fill in the indentation. Regardless of this, they can not bring me in to fill. This is very disheartening and difficult to understand why this can not be scheduled when I am in pain.
Oncotype results were delayed also. They finally arrived a few days ago. I will not need chemo which is a relief. However, I will have a video consult with RO next week. My MO said if I need radiation, they won't start until the restrictions on clinical visits is lifted.
Meanwhile, I can not return to work due to the inability for the office to see me for clearance. I put in a call today after all appointments were cancelled. I am asking to be allowed to return with limitations. I can not be kept from my job indefinitely.
All of these delays end up adding more time to the end of my journey. The reconstruction is part of my healing process. I realize the virus is serious, but to cancer patients every visit and test and pending result is important too!
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Yes. Was originally scheduled for surgery on April 14, but got a call the last week of March to have me re-scheduled. New surgery date is May 18. I hate to admit it, but I am afraid that date may be changed again.
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Dear Members,
You may find this information on our main site to be of help with respect to a Delay in Treatment due to Covid-19.
The Mods
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I was diagnosed with IDC on March 23. I was scheduled for a lumpectomy to be done on March 31. I was awaiting the VA to allow me to receive community care for this surgery and further treatment since that's where it all started. I was told I couldn't do it either at VA or community care. It's just too risky due to COVID-19. I have other health issues also that make me a high risk person for terrible complications from COVID-19. The Doctors have told me that the American College of Surgeons have new guidelines for this most horrible time to find out you have breast cancer. They are recommending endocrine therapy and reimaging in 4 to 6 weeks to make sure tumor is at least the same.
I don't mind telling you it's very unnerving! My armpit is sore, I can feel a tender lymph node in my axillary. They can't truly stage this cancer until lymph nodes are evaluated which they won't do until surgery. I of course worry that it has begun to metastasize. I am anxious, depressed, angry, and very tired. I do understand the COVID-19 fears, just wish I could get this out, hear for sure that there is no lymph node involvement, and move on!
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I was hoping to postpone my 4th chemotherapy session but was advised against it. I was worried about the COVID here in NY. My fear was getting it. But thank God everything is ok. Having cancer is bad but having it during the Coronavirus outbreak makes it 100x worse. We have to be extra careful of everything.
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My lumpectomy was been postponed until May 27. I am very concerned about this.
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Yes, in a way. I had two swollen spots appear on my right breast last Wednesday night. I sent in pics and they said they were spitting stitches. They leaked seroma and a little pus.
After a few days, I got a fever of 102.9. The on call doctor said they weren't having me come in because of COVID-19, but they called in antibiotics. He also said to call back if the fever didn't resolve in 48 hours.
The next day, the fever hit 103.9, my breast was cherry red, and after a hot compress, a lot of pus came out. I called again, and they said to come in to have my implant removed.
Because the infection was so advanced, I wasn't able to have the implant immediately replaced, so that side will be flat for months, and then I start back over with tissue expanders.
I can't help but wonder if I may have been a candidate for a direct replacement if I'd not been prohibited from going in sooner due to COVID-19.
I also had a number of COVID-19 symptoms, and spent 1 night sequestered on the COVID-19 floor of the hospital.
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CAT scan found node/ in lung directly under cancer site in breast lumpectomy. PET scan ordered . No other nodes or concerns found anywhere else but in the region of the cancer being found.
Second time with cancer. "Most Agressive"
All considerations postponed for three months or until hospitals are safe from COVID
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I'm so sorry for everyone with cancer experiencing delays. That is just not right. I'm shocked. CDR Westchester and Nana, you both have ILC. Did they say why? Is it because they think ILC grows slowly? CDR are you at Sloan? I thought it was just elective procedures to be delayed. Even having to go home after a mastectomy could be traumatic. I was in the hospital for 2 nights with extreme pain. I finished chemo 3/10 and started radiation on Monday without any delay. But I had an appointment to discuss removing my ovaries and that was cancelled. I guess I wasn't surprised.
On Target: So sorry to hear about your infection. If it makes you feel any better, I don't think you would have had another implant put in under NonCovid times. I had pus about 3 weeks after surgery. I did a lot of reading on these forums. Some people were on IV antibiotics and pic lines for weeks trying to save the implants. It worked in a few cases, but not all. My PS made an attempt to save them, opened me up, irrigated them and put me in the hospital on IV antibiotics for 3 nights. The antibiotics were worse than the infection for me, I had a bad reaction to cipro. I went home on oral antibiotics and a week later the skin was dying so he took out the TEs. I was glad, I didn't want to drag it out any longer with no success. It needs time to heal without the implant. Bacteria likes plastic. Did they test your infection? Mine was pseudomonas.
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Thank you JRNJ, my lumpectomy was In Westchester, I was concerned about surgery In NYC at that time. I am waiting to hear if Sloan would do the Mastectomy sooner even though I did not go with them for the 1st surgery. I was really under the impression it was simple and very early stage. The actual outcome of the lumpectomy I think surprised everyone.
I think they drs just see the Covid risk higher or equal to the cancer risk right now. Already lost a friend to Covid
, so am rather anxious about that too. Yes, they are considering a mastectomy elective!0 -
Yes, post lumpectomy radiation delayed (perhaps indefinitely) but my choice and I'm finally at peace with it. My lumpectomy was Feb 18th, but by the time I was supposed to go in for my radiation simulation session, Covid-19 emergency plans were ramping up where I live and work. My university closed, we sent all our students home etc. I don't want to have radiation -- even the partial breast radiation I was being offered -- in the midst of a global pandemic. I'd rather my local hospital's resources go to other cancer patients -- those for whom adjuvant treatments are vital rather than "insurance" -- and I keep me and my (fortunately very early) cancer the hell at home. I don't want to give or get Covid-19 by going in and out of major city hospital every day. And I don't want to risk having a severe Covid case because I'm run down by radiation (even if not technically "immunocompromised" as my one oncologist keeps assuring me I wouldn't be). What has been hard about coping with Cancer+Covid is having conflicting advice from my oncologists. Both really great docs but not on the same page. One is totally down with the no rads decision, one really isn't. At the end of the day I have to live with the decision I have made and take responsibility for it. And be thankful I am even in a position to make such a decision. Good luck everyone. None of this is easy.
DX Dec 27th 2019 age 51
ER + (100%), PR + (60%), Her2 negative Genetic testing negative
Surgery Feb 18th: lumpectomy – 6mm, Grade 1A, Stage 1, Clean Margins, 0/1 Lymph nodes. Onco score: 13
Declining (for many reasons) hormone therapy and delaying radiation b/c of Covid-19
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The general public, and journalists, don't seem to know that delayed tx for cancer patients is a real thing. I wish that this problem was being screamed from the rooftops. Why isn't it being made public? Even my husband seemed surprised when I told him this.
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I think that hospitals are being very tight lipped now. They are threatening to fire doctors and nurses - vital front line professionals - for speaking directly to the press. And journalists themselves are struggling with their own safety and access to sources. Also, acknowledging the extent of the secondary impact of COVID on other healthcare treatment is going against the federal government messaging minimizing everything. Normally the breast cancer 'lobby'/machine is relatively quite powerful, but also very dependent on the government for funding, I think.
It's infuriating. I hope that some journalists or media outlets can put some focus on this and other 'downwind' impacts. I think that some otherwise less vulnerable people would take this a lot more seriously if they could see that their own access to *any* vital medical care will be compromised.
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Despite being in NYC, my treatment hasn't really been affected by the pandemic (yet).
Chemo: I got my last few rounds in a different area of the hospital, as the old infusion room was given over to Covid patients.
Surgery: I'm switching doctors/going to a different hospital for my mastectomies and remaining treatment, and I was terrified that the surgery might be postponed...luckily, this hasn't been the case. I met with my oncology surgeon via a video call, but the plastic surgeon saw me in person just last week. (Granted, that would've been a difficult consult to do from afar!) He mentioned that some reconstructive work was being rescheduled, but since I'm getting radiation after the mastectomies, no one would recommend immediate reconstruction anyway.
If I just get expanders for now, then the second stage of reconstruction would happen six months after radiation ends. I'm still not sure I want to reconstruct, but I can't imagine that the stay-at-home orders and social distancing will continue through Feb 2021! Much more likely that the hospital will still be dealing with a backlog of cancelled/postponed surgeries...
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my reconstruction is up in the air now (mastectomy 8/8/19. Radiation complete 11/19). I’m in NJ, which is a hot spot. I have a TE ....which is uncomfortable, but not much I can do right now
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HelloHotFlashes, welcome here to BCO. We're really glad to hear that you are able to proceed with your treatment plan! Laurencl, we're sorry you are uncomfortable. What are your doctors suggesting?
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Hi Laurenncl,
I am in the same position as you. TE placed end of August and radiation finished mid-December. I want to get the other side removed and this darn TE out...My consultation was canceled and rescheduled to June. Not sure when the surgery will take place.
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Hang in there, AnnC2019, and please keep us posted!
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This isn't much consolation, but there is one upside to having surgery postponed: by the time you do have your procedure, you'll probably be allowed to have visitors as well! I know I'm fortunate to be able to go ahead with surgery this month, but I was really counting on having my best friend there when I woke up. Now she's only allowed to be my ride home, and with everything closed here, it seems she'll have to wait in her car after driving out from Pennsylvania. And she's been working from her home in the country for weeks, so she's probably less likely to inadvertently bring Coronavirus into the hospital than I am, coming in off the subway.
Sorry to whine. But my only other surgery before this was getting my chemo port put in, and the so-called "conscious sedation" made me unconscious, so I'm almost as scared of not waking up as I am of waking up and feeling mutilated... Ugh.
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My treatment has been delayed. I was diagnosed on March 23, and the soonest I could get in to meet with a surgeon is May 26 - this will not be the actual surgery date, just the first meeting. If I knew that the biopsy was the final word, I would not be overly concerned because I have DCIS, which tends to be slower growing. However, I understand that until I have the surgery, I won't know if I have DCIS or something more invasive. Also, my right breast is looking a bit suspicious so after getting the left biopsy back, my local provider wanted to biopsy the right. I declined because I'd rather have everything done where I'm going to have surgery, at a different facility. So, who knows if there is anything happening in the right breast.
My other open concern is that since I have small, dense breasts, I'm not sure if a lumpectomy is an option for me. So, that is weighing on me - will I be able to have a lumpectomy or will a mastectomy be my only choice? If a mastectomy, it means more down time and planning.
I had to quit HRT cold turkey, it has been two weeks and the migraines finally kicked in - I get headaches when my hormones fluctuate wildly. Perhaps it's best that I go through the hormone withdrawal before any surgery!
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Dear PAKNC,
We are so sorry for the delay and all the stress it brings. Keep posting here and let us know how you continue to cope with all of this.
The Mods
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My wife was scheduled to have an axillary dissection on March 18, but it has been delayed by the Coronavirus (we are in Toronto). She had a lumpectomy last September 27. The pathology reports stated she had 2/2 lymph nodes positive, with extensive lymphovascular invasion. She is ER/PR positive, Her 2 negative. The tumour grade was Grade 3. She is also unfortunate enough to have Thyroid cancer, and also had a thyroidectomy last September. I think the diagnosis was also Invasive Ductal Carcinoma for the breast cancer. She will also be undergoing treatment for papillary thyroid cancer.
My wife is 44 years old. She finished chemotherapy on February 28 on the FEC-D regimen.
Because the surgery was post-poned, her oncologist started her on hormone therapy (Tamoxifen). I believe they are even considering starting radiation, which they expected to do after her axillary dissection.
We are frankly frustrated and upset about the surgery delay.
One article I read on this site seemed to suggest that the delay in surgery might not matter given that she is starting hormone therapy, but the same article suggested that it was not good to delay surgery more than 8 weeks after chemotherapy. We are now 6 weeks since chemotherapy was finished.
Can anyone answer this question: How urgent is her surgery?
I'm wondering what I can to bring pressure to bear at the hospital without alienating any of her doctors.
I'm working from home, looking after the 2 kids with her. She tries to stay positive, but I know the anxiety is getting to her. She finally joined a support group to speak to other people going through this.
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I was diagnosed with Grade 1 Invasive Lobular Breast cancer on 3/26/20. Had an abnormal mammo, repeat mammo and ultrasound (which didn't correlate with mammo results). Was offered to rescreen in 6 months--I am NOT one to wait so was offered MRI. A 'distortion" was noted on MRI and referred for stereotactic biopsy. God Bless the radiologist who read my mammo and MRI--the tumor could have been thought to be scar tissue from a breast reduction 10 years ago, but the radiologists went a step further to rule that out. Who knows how far it would be if I and waited even 6 months. Tumor (I hate that word, makes me nauseous to say it, as well as cancer) is both ER and PR receptive, HER negative. I was started on anti estrogen medication (anastrozole) daily with hopes that tumor will shrink, Oncologist and surgeon are hopeful as hormone receptors are very strongly positive to estrogen. A lumpectomy is recommended, but are waiting for response to medication and for the Covid crisis to be over, no "elective" surgery. I don't feel this is elective, but my medical team worries about exposure and increased risk of infection. Was reassured that starting hormonal treatment is common with this type of cancer. There is no spread, no node involvement, but I still want this thing OUT OF ME. We have no family history of breast cancer, but am meeting with a genetic counselor next week. If they find a mutation, a mastectomy may be appropriate. Honestly, Id have a bilateral mastectomy tomorrow if I could. I was a surgical nurse so saw first hand reconstructive surgery and good results. Being a nurse makes this harder--I feel like I'm rambling, this is the first post I've made since diagnosed. All still new and terrifying. Thanks for listening
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Does anyone in NYC know if MSK would be able to start surgeries again faster since they are a cancer-only hospital? I called today and just spoke to a patient coordinator and she didn't seem to know, she did say they are not doing elective surgeries now and ARE treating COVID patients. I was confused because I thought they were cancer-only and not general intake, I asked if that was active cancer patients who also happened to get COVID and she didn't seem to know.
Here is the list of triage recommendations for BC cases put out by the American Society of Breast Surgeons: https://www.breastsurgeons.org/docs/news/The_COVID-19_Pandemic_Breast_Cancer_Consortium_Recommendations_EXECUTIVE_SUMMARY.pdf?01&fbclid=IwAR0IXlJdkbSndtbibVPg2-Oj1Lw2UQ3nAL2Vz04AtO2NQVhWnWb2EqXS0rA
For ER+ patients who are being told to just start hormone therapy while surgery is delayed, make sure you ask your doctor the efficacy rate of those drugs before being placated by the offer.
Amandakate, removing an ILC tumor is certainly not elective!
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I heard today that biopsies and reconstruction will now be considered essential. Of course they are.
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