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Feel like COVID is making my surgery decision

Feel like COVID is making my surgery decision

Posted by chrys21 on Jan 12, 2021 8:31 pm

Hi everyone,
So I was diagnosed with DCIS in December. I had an MRI just bf Xmas b/c it’s an Ill-defined mass and my surgeon wanted an MRI to inform a surgery decision. I’ve been told I’m not an ideal candidate for lumpectomy bc of my large tumor size and small breast size. But I preferred the idea of a lumpectomy as it’s less invasive, easier recovery, day surgery etc.
My surgeon was willing to try it though. After getting a second opinion yesterday and talking about mastectomy, I started coming around to the idea of a mastectomy. In the end I feel I’m not going to have a good cosmetic outcome with either, but started thinking with a mastectomy I have the possibility of being DONE if my stage remains at 0. Which is a big positive especially as going to the hospital every day for radiation is not something I really want to do right now with COVID as things have gotten so much worse. I’m in a hot spot. So I thought maybe it’s a safer approach for me right now?
I had a call scheduled with my surgeon today and shared my new thinking with him. Then he shared what’s going on at the hospital. He advised I might be better to stay with the lumpectomy “from a surgical management perspective” (it was already scheduled for next Friday). If I choose mastectomy now, I don’t have a date booked -  so that would need to be booked. He advised it’s also more likely to get cancelled as it requires an overnight stay and beds are scarce and getting scarcer. He did say that if I go this route, and I’m not happy, or I don’t get good margins, then I could have a mastectomy in future. And perhaps this second wave would be over. I’m so exhausted by thinking about this, and finally felt I was getting to my decision, and now I feel like COVID is making it for me. I am trying to see some positives here but just feel sad. 

Re: Feel like COVID is making my surgery decision

Posted by Buffythevampire on Jan 12, 2021 9:20 pm

chrys21‍ I have had a lumpectomy (Oct 2018) and a mastectomy (March 2019) and neither surgery required me to stay in the hospital overnight. The lumpectomy is easier to recover from. My mastectomy surgery also included reconstruction. One Surgeon did the mastectomy then my Plastic Surgeon placed an expander. I went to the hospital at 7:30 am and was going home at 2:30 pm. The expander had to be filled weekly so I was going to see my Plastic Surgeon to get saline. I did not need radiation.

Re: Feel like COVID is making my surgery decision

Posted by chrys21 on Jan 12, 2021 10:39 pm

Thanks for replying Buffythevampire‍ 
My surgeon is not changing his guidelines during this time (as I know some are) so the mastectomy is an overnight, and as such in this COVID crisis, at a higher risk of ultimately being cancelled. He advised that day surgeries could also be shut down at any time. I feel like I can’t take any more time to try to come to a decision and let this booked surgery go by. I don’t want to have a regret of not getting this out as soon as I could have. The future at hospitals is so uncertain right now. It’s just awful. 

Re: Feel like COVID is making my surgery decision

Posted by Boby1511 on Jan 13, 2021 12:21 am

Wow that is just crapy. 
I was scheduled to see a specialist in April in Toronto when covid shut me out. Toronto closed the door to all out of town patients. 
My local doctor that I was seeing on a monthly basis to give me lupron injections refused to exam me due to covid.
Likely these delays put me a month behind in treatment. I sometimes wonder if maybe if I got in the month earlier if it would have made a difference.
Probably not but I will never know.

I hope you get in.

Re: Feel like COVID is making my surgery decision

Posted by Essjay on Jan 13, 2021 8:08 am

chrys21‍ im sorry you are being pushed into making these decisions and then having the decisions taken from you. It’s hard enough to cope with a cancer diagnosis without COVID....

It sounds like your surgeon is a good one. He has been open and honest with you and he has listened. He has consulted others too, to come up with a plan for you.

it sounds like you need to go ahead with this surgery - be positive, these surgeons are very skilled and will do the best job they can.

Im a small breasted girl and had a big chunk of me removed in my lumpectomy. Scar tissue filled some of the void but I’m somewhat misshapen. I could potentially have cosmetic surgery to make things better, but given how I scar I’m reluctant to go that route and I accept my misshapenness. My hubby has accepted my new 3/4 boob too. It’s easy to hide under clothes! 

if I’d gone the mastectomy route I would have stayed flat - I know too many women who have faced multiple surgeries to reconstruct and remain dissatisfied with the results...

Radiation isn’t so bad - it’s a drag going daily but compared with chemo it’s a breeze. 

How are you feeling about it all today?

Best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Feel like COVID is making my surgery decision

Posted by Lala74 on Jan 13, 2021 8:32 am

Hi chrys21‍ sorry the stress of Covid and potential surgery cancellations are making you feel forced into making a decision.  I was diagnosed with Stage 2A IDC a few months ago. They opted for surgery first and when they tested the tumour i was told  it was Triple negative.  I was upset that i wasn’t provided chemo first to monitor the tumours response.  When I brought it up with the resident he said I was fortunate to have the surgery first due to surgeries being cancelled.  Are they really cancelling people’s cancer surgeries?  My spouses’  gall bladder surgery was delayed months due to Covid.  But mastectomies and lumpectomies are not elective.  When I asked my surgeon when first being diagnosed, if Covid was going to effect my treatment plan she said no and this has never been the case (I had read differently).  Can anyone else chime in?  

I live in Toronto (definitely a hotspot) and see the pressure the hospitals are under.  But the idea that cancer surgeries are being delayed is terrifying and blood boiling. 

Re: Feel like COVID is making my surgery decision

Posted by JustJan on Jan 13, 2021 9:13 am

chrys21‍ I am sorry you are having such a tough time. It is hard enough making decisions around cancer without Covid and I can only imagine the stress this extra component adds.

For me, the first priority was to remove the cancer. As there is less risk of your surgery being cancelled by having a lumpectomy than a mastectomy that would certainly play a large part in my decision. As you don’t have a date for mastectomy and risk of not getting one for some time, again that would have me favouring the lumpectomy. I’m not sure I could handle the stress of not knowing when my surgery would take place.

In terms of radiation, my oncologist said you have 90 days to start radiation after your surgery. So hopefully, you can wait long enough so that this current Covid surge is potentially over. One thing about cancer centres is that they are used to dealing with compromised patients and already had good infection control practices in place. They are even more vigilant now. 

I know you had done so much thinking and weighing of your options and had come to a decision that you were comfortable with. I’m sorry that you have to rethink your decision. I am confident that you will make the decision that is right for you. 

If you’re comfortable please let us know what you decide to do. We are here to support you. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Feel like COVID is making my surgery decision

Posted by Buffythevampire on Jan 13, 2021 4:20 pm

chrys21‍ I don't know if it makes a difference but I am in British Columbia and my mastectomy was done in the Vancouver area. There is 2 hospitals really close to each other. I had 2 more treatments left when Covid hit the hospitals. My last appointment with the Medical Oncologist was a phone call. My treatment was done in a different hospital then my surgery. I also have not seen my family Doctor because of Covid, only phone calls. Surprising I still am able to see my Plastic Surgeon in person. I have one more reconstruction procedure and then I am finished.

Re: Feel like COVID is making my surgery decision

Posted by chrys21 on Jan 13, 2021 7:24 pm

Boby1511‍ , Essjay‍ , Lala74‍ , JustJanBuffythevampire‍ Thank you all so much for replying to me💕
Your responses have really helped me to think this through.

I feel fortunate to have this date, b/c surgeries may be cancelled if things continue to get worse with COVID. This could be my only chance at a surgery for the next few months.  If I turn it down because I’m still not sure what direction is best for me, and another opportunity doesn’t come for a while, and I get upstaged in the end, I don’t want to be left wondering “what if I’d only moved faster?”

@Boby1511 I’m so sorry your treatment was delayed - it sounds like you did everything you could to move things along, and I think that’s all we can do. I want to be able to know that for myself too. 

Essjay‍ your reply got me thinking that maybe I will be okay with myself afterward, but I don’t think I’ll really know until I’m there. But I would never know if I had a mastectomy. I’m still so undecided so this feels like the right choice because I can still have a mastectomy down the road and may have to if I don’t get clear margins.

@JustJan Thank you for helping me to remember that my first priority is to get this lump removed - I need to focus on that. Thanks as well for the info about radiation timelines.

The wheels are in motion. I have a COVID test Monday, my first ever! I never thought I’d be getting my first COVID test under these circumstances! My surgery is Friday January 22nd.

Tips to prepare welcome!

Re: Feel like COVID is making my surgery decision

Posted by JustJan on Jan 13, 2021 8:47 pm

chrys21‍ sometimes it helps to have a sounding board and I’m so happy you were able to focus and shift your attention to your surgery on the 22nd. I will be thinking of you and hope all goes well. 

Sending virtual hugs. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Feel like COVID is making my surgery decision

Posted by TT53 on Jan 14, 2021 9:32 am

Hi chrys21‍ ,
sorry to hear you have to be dealing with this.  It is difficult enough to try to accept and rationalize the cancer diagnosis, on top of that, Covid and decision of what to do.  
I was diagnosed in March 2019 and I opted for a lumpectomy.  Unfortunately they did not get clear margins, so I ended up with a second lumpectomy which ended up the same, so I opted for a mastectomy even though the surgeon recommended a 3rd lumpectomy.  With all these surgeries, I did not have to stay overnight.  I was able to go home the same day.  I did have drains with the mastectomy, but that was manageable at home.  I am wondering why the stay in the hospital overnight?  Maybe the surgeons preference.
Either way, you need a surgery, and positive thinking, maybe the lumpectomy will get it all and you will be done and no more surgeries.  All I wanted, was to get this cancer out of me, but hindsight, if I had a mastectomy, I would have only had one surgery instead of three.  The medical team is doing their best, and I am glad this is all behind me and I am wishing same for you.
Good luck and keep us posted.
Hugs from BC

Re: Feel like COVID is making my surgery decision

Posted by DMT on Jan 14, 2021 2:16 pm

Hi chrys21, I agree with get it out ASAP. Personally I have dealt with 5 different kinds of cancer over the last 43 years. First one when I was 26. I was resistant when I was young but the Drs were very insistent on moving quickly. Over the years my feelings have changed. With every diagnosis I want it out fast!!! Once I even had to get to the hospital for my surgery in a horrible snow storm. That day the surgeon said to me “ we could have re scheduled”. Didn’t make any difference.. I wanted it gone! Sometimes I have had to have more surgery because the margins weren’t clear. I just kept doing what they recommended to do to get it all. Now, like you, It’s breast cancer. It too can be dealt with. I found a terrific gal who fits breast prosthesis. On the outside no one knows, there are lots of ways to have your clothes fit nicely. If a lumpectomy works for you and you don’t need further surgery, there are partial prosthetics to help even you out if need be. The emotions are always a roller coaster ride. When you feel out of control, close your eyes and take a few slow deep breaths. It helps to calm you down a bit. Keep posting on how you are getting on. Venting helps!