Has your treatment been delayed due to COVID-19?
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All my imaging is on schedule, but they had to put my bone treatment on hold. But all my chemo is pills that get mail to me so I am on those. Nylasta, and capcitibin
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marijen, i agree with you that they should be considered essential, but i think this is going to depend on geographical area and how overloaded the hospitals in that area are. The triage recommendations i posted above go through whether certain biopsies and reconstructions should be considered essential.
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I’m off hormone therapy for now now. A month delay in the Lupron injection but I can’t imagine they’ll want me coming to the hospital in another week either. Appointment with new MO (mine left right before everything blew up) postponed until at least June. I’m not concerned from a cancer perspective but I’m not loving the hormonal shifts after finally reaching a stable point on the meds. The longer it goes the less I’m going to want to go through that whole process again.
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My radiation is delayed to mid-June (surgeries Jan 7 and Mar 3), no surprise with pure DCIS and good margins. MO started me on anastrozole Apr 3, so far so good.
What's the record for longest Stage 0 treatment, lol?
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Thankfully, no - at least not yet. Everything seems to be moving really fast right now. I had a biopsy of my spine at L5 on Friday morning, and by Friday afternoon, I was scheduled with the Radiation Oncologist for Monday morning. I'll see him in person, but will "see" my Medical Oncologist by Video Visit. She should have all of my test results by then, including my pending HER2 status and I'm hoping that she will lay out my treatment plan. They did have me get a COVID 19 test the Wednesday before my Friday biopsy. The COVID was negative, fortunately. All other scans and biopsies were scheduled and completed right on time.
I have no idea what's coming, but all I can do is wait and see. Interestingly, when I called to schedule the bone biopsy with Interventional Radiology, I was told that they could get me in "sometime in May". I messaged my MO, and she must have made a phone call, because Radiology called me back within an hour to say they could see me within a couple of weeks. I took it!
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My April surgery got pushed to May.....and just today, it got bumped to "sometime in June" ! Something is starting to work on my brain...don't know if it is all this COVID stuff or the delay it is manifesting on my surgery!!!! Either way, it's not a comfortable place to be.
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Nana, I'm so sorry. Waiting is hard enough without having it pushed back and then back again.
I just saw my Radiation Oncologist (face-to-face) and he referred me to an Orthopedic Oncologist. Her office just called and scheduled a video visit for Wednesday. I'm thankful for the video visit because that means my husband can be part of the conversation.
I hope they can move your appointment forward and not back.
(((hugs)))
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So this answers my question as to what has been going on at MSK in NYC--they postponed 1,000 cancer surgeries and were taking in COVID patients. It says they are ready to start rescheduling now though. I wonder when other NYC hospitals will be able to follow suit.
https://nypost.com/2020/04/18/coronavirus-crisis-delays-cancer-surgeries-for-over-1000-nyc-patients/
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My 6 month oncology appointments has been moved 2 times, don't think it's a big deal as everything seems to be OK. They keep wanting a phone appointment but I decline as I have been e-mailing my oncologist with possible Anastrozole issues nothing earth shattering. I need an exam not a phone appointment so I will wait until they can get me in. I am more concerned about those having delays in testing, biopsies, treatments, and surgeries, I cannot imagine these things being pushed back although I understand the reasoning but I cannot imagine. Hugs to all of you!
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DCIS. Crossing fingers no invasive cancer is found after double mastectomy, which has been delayed to June the earliest. In case there is invasive cancer, I was prescribed Tamoxifen. Hesitated taking it since I won't have to take Tamoxifen after the surgery (if there's no invasive cancer). It feel like they were prescribing it to make me feel like they were doing something. Yesterday I decided to take the pill. We'll see...
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I'm 27 and was diagnosed with stage 2 invasive ductal carcinoma in October....luckily I was able to have my mastectomy in December before all this craziness started with COVID. But I was scheduled to have my implant exchange surgery in the beginning of April and for good reasons it was canceled. I was told I could reschedule for June and picked a date, only to be told it might not be happening then after all. I feel silly for complaining about not being able to have a very cosmetic procedure in the middle of a pandemic, and feel that because I've been lucky enough to be able to avoid chemo and radiation I don't have the right to complain (currently on hormone therapy-struggling through drug induced menopause one day at a time.) My heart goes out to everyone who has had more pressing procedures or treatments delayed because of this-It is my hope we have many brighter days ahead.
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- emilyyjane, your attitude is heartwarming. I hope when you get your exchange surgery that you've got the best looking boobs ever.
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emilyyjane, I am in the exact same situation. Currently have TE in place and no fills yet because we were waiting on some places to heal first and now delayed even longer. Honestly, not much to be done but wait. I agree, thinking about the next surgery right now makes me feel so guilty! It's refreshing to hear another person say exactly what I've been thinking.
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Emilyyjane2 and emmaj9, we're sorry you have to be here, but glad you've found us and decided to join this wonderful Community! We sincerely hope that it will be a source of great support to you. If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.
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From the Mods
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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!
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I'm 43 in Ottawa, Canada. I am stage 2 with 1 positive node, hormone positive. I've had 5 months of chemo and responded really well. I was supposed to get skin and nipple sparing mastectomy with immediate reconstruction in the next 4 weeks but I learned today from my surgeon that any cosmetic action is considered non essential at this time. So basically telling me they can no longer save my nipple and skin and attempt any form of reconstruction. I was shocked! This plan is what kept me going, I clung to it. She said if the oncologist agrees, I could try and wait, be on tamoxifen, and see what happens in June.
Anyone else being put on hormone therapy after chemo until surgery can happen?
Thanks for reading this!
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Given the delay, I got a second opinion. The second advised we could try a re incision, and try just to clear the margins. I should still get a good cosmetic outcome. Since I was still on hold for the mastectomy with the Covids, I agreed to give it a shot.
So happy I did, the pathology came back clear. The margins are fine now. I won't need the mastectomy. Silver lining to this delay.
A little shocked, if we hadn't been delayed I would have had the mastectomy as recommended. Wouldn't have thought about a second in the middle of treatment. I did get a second in the beginning and the recommendations had matched.
Now I have gotten a second on the entire treatment plan and they are opposite.
1st Masectomy vs 2nd opinion re- incision
1st No Chemo, 5 week radiation, and aromatase inhibitors
Vs
2nd opinion- soft Chemo CMF (8 times, 4 months) or TC ( 3 months) ; Radiation, and aromatase inhibitors.
I went with the 2nd on surgery. Figured I had nothing to lose, if the margins didn't clear I could still get the masecectomy.
The Chemo no Chemo option has me stumped. Will it be worth it, seams more risky.
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Yes, unfortunately it has.
I went for my first mammogram when I turned 40 earlier this year in February. They found an architectural distortion, so I went back for a second round of imaging. They then wanted me to do a biopsy up at the University of Michigan, which is a good place for cancer treatment and research. The biopsy was done in late February. It came back with a complex scelorsing lesion, which can be hiding cancer in approximately 10-15% cases (this number is debated in the literature).
My doctor recommended surgery to remove it and confirm it isn't cancer. The MagSeed placement was scheduled for April 17th and the surgery was scheduled for April 22nd. Both were cancelled when the pandemic hit Michigan, with no timeline for scheduling given that we were one of three epicenters of COVID at that time.
Yesterday I received the good news that they are tentatively scheduling my surgery for May 27th! My pre-op appointment will happen via video conference next Tuesday and my MagSeed placement will happen next Wednesday. By the time I get my results, it will be close to 5 months from start to finish that I've been wondering if I have cancer.
To be clear, I am supportive of the delay, though it has been hard and scary. I do not want to get COVID as I have asthma and my family has lost extended family members to it.
Thank you for listening. Sending love to all of you on this thread.
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CDR, I have wanted to be aggressive as possible, that is just me. I went for 3 opinions on chemo. My Oncotype was 15. What is yours? First one said I don't know, second one said no chemo, third, Sloan, said yes chemo, CMF every 2 weeks for 8 treatments, same as you. Is your recommendation from Sloan? They are big on CMF due to less permanent side effects. Is your size really greater than 6 cm, because I thought that was automatic chemo? Also, it appears as though you had two recurrences, one while on Aromosin, and the Oncotype scoring assumes endrocrine therapy will be enough. I did the CMF. If I was offered TC, I probably would have taken it, but I didn't push it. I finished 3/10. It was still kind of miserable, but not that bad, if that makes any sense. I lost 90% of hair, but still kept enough for a tiny ponytail. Day 3 and 4 were pretty bad, due to Neulasta shot, but other days not that bad. No nausea with Zofran. I did have acid reflux and chemobrain, and my taste buds were shot towards the end. And I did not work during. Good luck with your decision!!
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Hi JRNR,
Thank you so much for your reply. Its very helpful, My Oncotype came back 18. Yes the CMF or TC option is from Sloan, the Tumor was 6.7cm. Much larger than anticipated. Yes I was on Aromasin in the past. Guess I didn't stay on it long enough.( I had a lot of bone and joint pain, got osteoporosis) I was bit shocked when the biopsy came back cancer. If Sloan had done the original surgery it would not have gone out for Oncotype because of the size. Perhaps it would have simplified the issue with no discussion, but now with that oncotype at 18 it raises some doubt if chemo will be very effective. Thank you for sharing your experience with CFM maybe chemo is worth it even if only a little effective.
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My Dr. at Sloan was Bromberg. I loved her, but went back to my local MO because he agreed to implement her plan. Did your Dr. offer CMF and TC equally? Did your Dr. lean towards one or the other? Bromberg recommended CMF to me, and informed me about TC and AC. My tumor was much smaller, but I had 2 macro nodes, lymphovascular invasion and extra nodal extension. I also had a 13 cm LCIS, which no one seemed to care about because it's not "cancer", but I keep hearing stories about LCIS and DCIS coming back. My hands have been going numb at night since I stopped chemo and I was on steroids to help. But it is getting better, they don't hurt as much as in March. I also have a lot of aches and pains which I also had before chemo, I think from Statins, and again after chemo, but not during. I read Methatrexate, the M in CMF, is actually used for arthritis. Warning though, most people do get bad bone pains from the Neulasta, but I didn't. And I haven't started Aromosin yet, so I am afraid my painst will get worse. I was also just diagnosed with Osteopenia. I have no regrets doing CMF, the only remaining side effect is the numb hands (and my horrible hair which is growing back). My brain feels back to normal. My main regret is if I was going to suffer the torture, maybe I should have done TC. Some people I read about did fine on TC, but others had bad side effects and they worry about permanent neuropathy. Also, I gained 10 to 15 pounds, but kind of don't mind because I'll be getting DIEP surgery and need the extra fat. It went by fast. I had my last radiation on Friday, will have a Lupron shot next week, then Aromosin. I don't know how old you are. Sometimes they recommend CMF if they think the patient isn't strong enough for TC. We had a few CMF threads for those of us doing it. Some had metastatic, but couldn't handle anything stronger. I'm 54, and not by any means a fitness or health freak, I don't exercise, but I'm pretty strong. I have nausea tendencies, sea sick, very sick during pregnancy, so that was a big fear, but it never really hit. Just got knocked out, tired, dizzy, headache, and stayed in bed day 3 and 4. Also remember, the Oncotype chemo effectiveness assumes you are doing tamoxifen or AI and don't need any "extra chemo", it is not necessarily saying that chemo won't be effective alone. Will you be able to do those? How long did you last on the Aromosin? There is some studies that say chemo is not as effective for ILC, but that doesn't mean it's not effective at all. I discussed that with the Dr. There are also studies that Tamoxifen might not work for ILC, and Sloan recommended AIs with ovarian suppression for me. I'm also glad I got radiation with a mastectomy, because they don't always give it with mastectomy. Also note, they only took 2 of your nodes. I'm glad they were negative, but ILC is very sneaky and spreads in weird ways. I considered getting a full ALND, but my surgeon wouldn't do it and I didn't want to delay my other treatments.
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thanks JRNJ
I think they are offering me the cmf or TC more towards the cmf because I've had several medical conditions they probably don't want to exacerbate including dvts and GI issues. I'm 57 so I think I'm still young & strong enough to manage the treatments. I'm not sure my local oncologist will do the Sloan recommendation.
I've had the lcis since 2013 I don't think they even try to take that out because it's just everywhere. I lasted I think a year plus, on the ai's last time before the bone pain became too much , switched me this time to Femara so far pains started but they're not quite as bad yet. they really really really want me to stay on . So working with my rheumatologist to manage the joint and bone pain. I'm on Reclast ( once a year infusion) for the osteoporosis.
I am concerned like you said how sneaky ilc is. It managed to get to 6.7cm all the while I was getting bi-annual scans mamo and mris, and nothing showed up since 2014.
I definitely have to get radiation. Just waiting on chemo decision 1st.
Thank you again for sharing your experience with cmf it really helps me understand what I may be signing up for.
When is your diep?
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CDR, My Dr. did say the LCIS has to come out, which changed my lumpectomy to a single mx, and I just wanted them both gone even though the left was clean due to the problems with scans not finding LCIS and ILC. And getting back to the original theme, I am still shocked they postponed your mastectomy. I am glad that none of my treatments have been postponed. They even scheduled ovary removal for May 26, which is really elective, but I decided to wait until August and get a Lupron shot (tomorrow). DIEP has to wait 6 months after radiation, which I finished Friday. I may put it off til January so it doesn't ruin x-mas. Good luck with your decisions, it's so hard making them!!
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I know it's not very consolatory...one of my biggest fears during neoadjuvant chemotherapy was that my surgery would be delayed due to some big disaster, so I profoundly empathize with the situation many of you are in, but the issue is getting some press so perhaps that will cause some hospitals to re-evaluate their policies.
For Cancer Patients, Anguish Grows Over Deferred Surgery As Risk Rises
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Hi Marmotka and Others:
My wife is 44 years old, Stage 2 as well, 2/2 lymph nodes positive, ER/PR positive, HER 2 negative. She is also unfortunate enough to have thyroid cancer (also Stage 2). She had a lumpectomy last September, finished chemotherapy on February 28. She was to have a full axillary dissection on March 18, but of course it was re-scheduled due to the pandemic. She was then put on Tamoxifen due to the delay.
She was very angry and anxious when the surgery was post-poned, but we spoke to a cancer specialist who advised that us we could take comfort in knowing she has had continuous treatment since last September, ie. lumpectomy, chemo and then Tamoxifen.
Thankfully, we found out yesterday that her surgery will go ahead on Tuesday.
I want to say to all of you out there that I can empathize with your anger, frustration and anxiety. The last 2 months in our house have been difficult, to say the least.
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Sadly for me, my mastectomy was postponed, I'll have to wait 3 weeks and it is still not sure too.
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Chirocracy
I’m so sorry for your delay. I know how upsetting it is. I had a mastectomy 8/19 and am now waiting for reconstruction who knows when. I hope you get confirmation soon0 -
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noticed a mass left breast July 2, 2020. reached PCP July 6th due to holiday. took 2 1/2 weeks to get DX. Mammo and U/S appt. due to back log. Another 10 days to obtain Breast biopsy. every step has taken 7-10 days to schedule. IDC HER2 +, Ki67 69%. a full 2 months until chemo started. In the 2 months period the mass grew substantially, and the breast swelled. I am Stage IIIB ! YES, I do believe COVID played a role in the delays at every step! Very distressing as a health care professional to know the delays most likely contributed to the advanced stage! Am currently undergoing neoadjuvent chemo and targeted therapy. no further delays.
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I had a routine mammogram 4 weeks today, hopefully being covid free surgery is on Thursday! So I’ve been pretty lucky I guess
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