Working During COVID-19, just found out have DCIS

KARW41

Hello, I just got to the point of having a phone consult in about a week with the breast surgeon. The report says 10 mm linear DCIS, intermediate/high grade. ER/PR positive. Are people with DCIS also immuno-compromised?? Also, I'm wondering if 10 mm and small breasts means you get a mastectomy?? (Reading that is 6 weeks recovery time; edited this after seeing that from reading in this forum). I got told we are likely reporting back to work per April 7 since the federal government will be told to open up the place I work. It is a publicly accessible, heavily trafficked building and they are also insisting on us going to mandatory in-residence training on an installation for a month at the end of next month as a requirement of this probationary job. That will entail travel across country and staying in a dorm or hotel and eating at a communal dining facility to the best of my knowledge. I also have had late stage Lyme and asthma, and don't want to be exposed any more than I have to. I'm tentatively offered another "permanent tenure" higher grade job in an office that is less public. I just started this job I'm in now. Is it a good enough reason to ask to telework from home, or change jobs altogether if the final job offer comes through, based on people with cancer apparently being more immuno-compromised?? Is anyone else having to deal with being told to go to work in a relatively public or more exposed setting during this pandemic? I just got to the point of having a phone consult in about a week with the breast surgeon. The tentatively offered job requires that I move, which could cause a delay in switching doctors all over again, but it would be in a less public setting, not interfacing with as many people. Is that a good enough reason and would you explain the medical condition to people at work. I was in a temp job before and took this lower paying/probationary but "permanent" "status" job mostly for the health insurance and to be employed. My mother has had breast cancer three times, always at advanced stages, and is alive at age 79 still but her quality of life has been very diminished. I am not even sure hospitals will do any type of surgery at this point with the pandemic. I'm kind of grateful to have what I have, and not to have (as far as I know right now) the more advanced stages my mother had, three times from age 52 to 70+ years old. Thank you. I'm just wondering a) is this a valid point; and b) has anyone else dealt with this and their job; and c) would you explain the health situation when you are asking to telework and/or to change jobs so soon??

cake8icing

Hi KARW41: my heart goes out to you with this dilemma and I can empathize as well. I lost my job in January, was diagnosed on Valentine’s Day and last Friday, March 20, had a left MSX. On March 19, I was offered a job. I told the hiring manager about my surgery and that, if pathology comes back negative(with DCIS, if no micro invasions, I will need no more treatment) , I should be able to work by mid-May. She and the company were accepting of that timeline. This is a sales job that requires travel by plane, so I am facing some of the same worries about exposure that you are. As for how much to share, you always have the option to tell them as little or as much as you want regarding your state of health. Perhaps you can say you are going through a healthcare challenge right now and hope they can work with you to accommodate your schedule? I wish you all the best of luck.

dysonsphere

Have you began chemotherapy? It is chemo that lowers your white blood count and puts you in that category, unless you have other underlying health factors. Obviously, you definitely be in that category once you start chemo.

Beesie

dysonsphere, chemo is never given for pure DCIS.

Ingerp

DCIS would not compromise your immune system (actually--no breast cancer would, although rads/chemo might). I've stuck with lumpectomies for my DCIS and IDC, and the one on the left was a pretty big chunk (8cm x 6cm x 3cm). You will likely be given the option of lumpectomy or mastectomy--that's often the first decision we face. Recovery from lumpectomies is generally a day or two. I'm sorry I can't address the work issues--my whole office is teleworking these days.

KARW41

cake8icing, It helps to know you are also dealing with these same questions on work and exposure. I hope your surgery has gone as you needed it to go. My mother had two mastectomies and it was a while for her to recover from them. Sending you wishes for healing and comfort as you recover. That is amazing timing on the job offer that you received. I was away from here a number of days since I'm also offered a new job, waiting on final paperwork for it, and it is less public facing than the one I'm in now. I wondered about the immuno-compromised issue and I think I see another post below that says it is mainly from the chemo. I can only think that one would want to put health first and take whatever precautions are possible under the circumstances.

KARW41

dysonsphere, thank you very much. I don't know about chemo but so far don't think that I would get it for this. My own mother went through chemo twice and is about to go through it again for a different type of cancer. I have had late stage Lyme disease as well, which affects the immune system, and also have asthma. I was thinking that the cancer cells also take away energy somehow, and that can't help things.

KARW41

Thank you for clarifying, Beesie. I am just grateful to be able to post here and get feedback. I've been expecting to get breast cancer for a while, due to my mother having had it twice.

KARW41

Ingerp, thank you for sharing that. My office is now teleworking too, but they are saying they will re-open on April 7, despite shelter in place guidance. The public comes in for various government services. I am expecting to change jobs, just waiting on final paperwork. and that would be all telework for now. It is really helpful to know that you were able to get mastectomies for larger size areas. I appreciate that you posted that. Given my family history, my first reaction would be prophylactic mastectomies, but then I see it takes so long to recover, and I need to work to support myself as long as I can ......

cake8icing

Thanks, KARW41. I got the good news on Wednesday that the pathology came back with no surprises! That it was DCIS only; no invasion; sentinel node was clear! So once I heal from the surgery, I am finished until my screening mammogram on the right breast in January 2021! Such a relief!! It has been just two weeks post-surgery and while I definitely know I need more time to fully recover, I am very pleased with my progress so far. All the best to you with your job offer; it feels like karma has been kind to you and me on the job front! :-

KARW41

That is terrific news on the pathology report!! I hope it takes a load of stress off your mind. There is enough stress without enduring all of this right now. I need to further research the factors that lead one to get nodes removed and/or mastectomy for DCIS. I witnessed my mother go through so much with chemo and radiation and Tamoxifen and Arimidex and two mastecomies for two different breast cancers (one recurrence in between) and know the mastectomy surgery is serious business. I hope you are not in a lot of pain and are getting recovered more each day.

Beesie

Node removal for DCIS is only required if someone is having a mastectomy, and that's only because it's not easy to go back and do a Sentinel Node Biopsy after the breast has been removed. If some invasive cancer happens to be found during the surgery (about a 20% chance of that happening after a needle biopsy diagnosis of DCIS), then after a lumpectomy, the nodes can be easily checked with an SNB as a quick separate operation afterwards. But that can't be done after a MX - the SNB procedure requires injections of dye/isotopes into the breast, obviously not possible after the breast has been removed - which is why nodes are usually checked when someone with DCIS has a MX. It's not because of the DCIS, it's because of the risk that invasive cancer might be found. Some women with DCIS choose to have an SNB even if they are having a lumpectomy but personally I would not remove nodes unless required - no point exposing oneself to the risk of lymphedema (a lifetime risk after node removal) if not necessary.

A MX is required for DCIS only in situations where the DCIS is very widespread or if there are two separate areas of DCIS in different quadrants of the breast. I had two areas of DCIS totalling over 7cm - all in a small breast. So a MX was medically the only option available to me. A 10mm (or 1cm) area of DCIS is very small and a lumpectomy would be medically feasible no matter how small your breasts are. That said, some women with small areas of DCIS who are medically eligible for a lumpectomy opt for a MX or a BMX for other reasons - because they are high risk, because of extensive family history, etc..

Edited for typo only.

KARW41

Beesie, thank you so very much for clarifying. I am saving this information for reference, since they now want a second biopsy today, following the DCIS diagnosis a week or more ago, since there is some other area they want to check. Might get two lumpectomies at once, not sure. They are also putting in the Savi Scout today for lumpectomy next week unless something else arises. I truly appreciate the excellent and detailed information here. I first came here to this site after my mother's breast cancers, and had had suspcious mammograms and fibroadenomas before as well. This place is such a valuable resource to me. Thank you very much.

cake8icing

Thanks for your well-wishes! My recovery has gone very well, actually. I never needed the narcotics; just the Diclofenac and Tylenol for 3 or 4 days. Now, mostly I have a lot of skin prickly pulling and sunburn like pain, I think because I asked the surgeon to make me as flat as she could(I do not want reconstruction and didn’t want any dog ears), and I am pretty thin(5’9, 138 pounds) so I think my skin is just being cranky at being stretched over where my breast used to be. Also, I have super sensitive skin(a mild sunburn for me hurts like heck!) I would call this uncomfortable, not pain...still able to do my 5x a day PT exercises(slowly), and sleeping well at night. Just always feeling like I am wearing a shirt over a bad sunburn; that is the best way I can describe it. Bessie gave a great summary about why to choose MX vs. lumpectomy. For me, I had a medium size section of 3 multi-focal points(4 cm across) on a small breast. Plus a big fear of radiation on my left breast, due to chronic pericardial effusion(fluid buildup over the heart lining). They can do a lot to protect your heart from radiation but nothing is perfect. So when I added up my small breast size, with my medium size cancer, with high grade nuclear type with comedonecrosis....all of it added up to my decision for MX over lumpectomy. And of course, getting the all clear with the pathology was like winning the lottery! To think that I am done! My next visit is my screening mammogram on my right breast in JANUARY 2021!!!! I am SO RELIEVED!

All the best to you, KARW41, as you make your decisions. I will continue to check up on you!

cake8icing

Hi all, there is a webinar sponsored by facingourrisk.org, discussing delays for breast surgery during the COVID-19 crisis. (Go to their website; it is on April 7. (I got an email about it and tried to paste the screenshot here but it is not working). My surgeon told me the week after my surgery, that Mastectomies for my early type of breast cancer was being postponed at her hospital, patients being put on Tamoxifen, sent on their way to be called back post virus crisis. Yikes!

MelissaDallas

Webinar link on this page for delays involving hereditary breast cancer and COVID:

https://www.facingourrisk.org/about-us/about/covid-19.php

KARW41

Cake8icing, that is so encouraging on not needing pain meds. I would think similarly and would want the same thing on being flat. After all my own mother went through, and having reconstruction, I'd just be glad for any quality of life I can get, and am not thinking at the moment about aesthetics. Thank you for explaining that about the radiation. That helps to understand. They just told me I have a second area of DCIS, but from the second biopsy, as well, there is no "invasion," showing so far. The surgeon says lumpectomy, I guess of the two areas, is okay for now, so I'm going with that. One area is 10 mm and I don't have the size on the second one, but she said it is okay to do lumpectomy for now. One is closer to the chest wall so I know that's going to be a bit unpleasant, but oh well..... I used to run marathons (not fast at all) and am basically small breasted as well. No kids etc. Not attached to my breasts, so if I can ever take time, I would probably do what you have done on the mastectomy.... I have grade 2/3 necrosis in the first one. I don't know the second one yet. All the best back to you, and I am so glad you have got the all clear and are recovering so well. It is very encouraging to read your story today. Thank you.

KARW41

Thank you, MelissaDallas for that link. I listened to some of it and need to listen to the rest of it. What a difficult time with all the secondary stress of this pandemic, adding to the regular stress of cancer and hereditary cancer in particular with the screenings. I'm getting more genetic counseling since I found out there are 9 genes strongly associated with breast cancer and not just BRCA (hope I'm getting that right) and so I'm getting tested further, by mail, likely this week. I was negative on the BRCA but my Mom has had breast cancer three times (and now pancreatic). Thank you for sharing that.

cake8icing

Hi KARW41:

I also had genetic testing done for 9 different genes. The genetics counselor seemed shocked that I came back negative on all 9, considering I ha a lot of family members with breast cancer(sister, 2 cousins, grandmother, niece). I truly believe that there is some link in my family, either genetic that they just haven't got the testing yet to figure out, or maybe some environmental aspect that all my family was subject to.

I listened to that podcast on breast cancer and COVID and it was sobering. The doctor who spoke mentioned that one of the concerns about surgeries that are not critical is, what if the patient is asymptomatic but actually has COVID-19? The medical community is worried, not only about the risk to the patient(driving them into a symptomatic disease state because of the surgery), but also the risk to the medical staff getting infected from an asymptomatic patient.

PAKNC

I was diagnosed with DCIS in late March on the left breast, I can't get in with the surgeon at the Healthcare system that I want to go to until the end of May due to COVID and I requested the appointment in late March. I had to stop HRT so my story to myself is that hey, the DCIS may shrink by the time I get in because it's estrogen/progesteron positive and my hormone levels have now plummeted as a result of my own endocrine therapy of stopping HRT cold turkey ;-) After the biopsy came back, the radiologist at my local healthcare center wanted to do a biopsy on the right breast as well but I declined because I felt that I would rather have it done, if needed, at the same place where I will have surgery so I don't have to send on pathology slides again.

I would be interested in getting gene testing,I know I don't have the BRCA genes. My Mother had breast cancer, she never had a recurrence and passed away 20 years later from a fall. I plan to ask my surgeon about the Oncotype Dx test. Is there a link with other genetic testing?

Beesie

PAKNC, the Oncotype test evaluates the genetic make up of the cells in the tumor; it is not the same as genetic testing that you have to find out if you carry a genetic mutation that might increase your breast cancer risk. The Oncotype DX for DCIS test assesses the aggressiveness of the tumor and whether the patient might be able to skip radiation after a lumpectomy. The Oncotype DX for IDC test assesses the aggressiveness of the tumor and whether the patient would benefit from chemotherapy. Is this the test you were thinking about, or do you want to have full panel genetic testing to determine if you carry an inherited genetic mutation?

Here is a short explanation of panel tests from BC.org: https://www.breastcancer.org/symptoms/testing/genetic/which/types

It's good that you have stopped HRT. I doubt that this will cause your DCIS to shrink, but hopefully it will tamp down on any growth. Since your DCIS is ER+ and you are likely to be prescribed Tamoxifen after your surgery, if you will have a long delay before surgery you may want to find out if you can start Tamoxifen now. From other posts on this site, this appears to be the protocol that's being used these days to address delays in surgery.

KARW41

Hello, on the genetic testing, cake8icing, I also tested negative on BRCA genes, and they just tested me on 90+ cancer genes. I have cancer all over my maternal side of the family.

The place the surgeon referred me to, a genetic counselor, had me tested by Invitae. I'm waiting on results and got a lumpectomy (two spots) yesterday.

I appreciate the info above on the DCIS genetic makeup and the human genes.

That is stressful on waiting for surgery. I got in under the wire out here and they are only scheduling week by week. There was a website that said it can take 3 years for high grade DCIS to get invasive. I don't know the accuracy of that, but it is even longer apparently, potentially, on lower grade DCIS. I Googled to find that info. I think I've had mine since 2018. I got a rash-like itchy spot (which I had wondered about IBC for a while) and complained to the doctors of breast pain in 2018 and this is now the same area where they say I have DCIS now. I will find out what my pathology report says in the coming days.

Moderators

Dear PAKNC,

Welcome to the BCO community. We are sorry for your diagnosis and the delays brought about by Covid-19. We are glad that you reached out and you have already received good information from our members. You may also want to check out this page with links to resources around Covid-19. Please stay active here and let us know how we can be of help as you navigate your way around the discussion boards.

The Mods

PAKNC

Thank you for this info on the Oncotype Dx and genetic testing. I will also check out the COVID resources. I'm doing ok with the wait, but at this point, I am more than ready for the appointment, needless to say. It is certainly giving me ample time to research and weigh the pros and cons of all treatments!

KARW41

PAKNC, I used Invitae for the genetic testing. My doctor had me do a teleconference with a genetic counselor before I could get it done. I answered a lot of questions about family cancer history, all on my mother's side, to justify the need for the test. In my opinion, it is definitely worth exploring. I hope you have gotten in to see the doctor(s) that you needed to now. I am just getting back into the forum today. I persisted in getting a second opinion since the first place I went was not seeing patients like me until August or September, due to the pandemic. This second place is actually doing surgeries now, and has been the whole pandemic. In case it might be useful at all: the surgeon made a remark about blood flow depicted in my December 2019 MRI and the possible rate of growth (or grade?) of the DCIS based on that. I share that in case the MRI/blood flow thing is of any use to you. I did not know about that before, that an MRI would show that.