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Topic: Just diagnosed. What to ask my surgeon?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 6, 2020 08:42PM

Colleen_2 wrote:

I had my biopsy last Friday and my family doctor called me today to tell me I have DCIS. I normally would go to my surgeon to get my results but she’s on vacation until next week. I’m hoping I can see her next week to get details and find out what’s next. I’m just wondering what questions would be good to go into the appointment with. I want to be as prepared as I can. Any advice would be appreciated.

Thanks




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Aug 7, 2020 07:45AM Beesie wrote:

Make sure you get a copy of your pathology report.

The basics that you want to know are ER status, PR status, and grade - those all come from the biopsy pathology - and an estimate of the size of the area of DCIS, which comes from the imaging. Based on the size, is a lumpectomy + radiation feasible? Or is a mastectomy recommended? That's about it - DCIS is less complicated than invasive cancer.

This thread might help you frame your discussion with your doctor:

Topic: A layperson's guide to DCIS
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 7, 2020 10:39AM Colleen_2 wrote:

Thank you so much Bessie for your response. I will write those questions down and definitely check out that thread. I really appreciate your response. Thank you

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Aug 7, 2020 06:43PM LivinLife wrote:

Welcome Colleen!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 8, 2020 10:28AM Colleen_2 wrote:

Thank you LivinLife

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Aug 15, 2020 09:33PM - edited Aug 15, 2020 09:35PM by sylvia1

I was also diagnosed last Thursday. The surgeon that did the biopsy called and told me that I had DCIS high grade. I am meeting with him on Monday to find out what my treatment are going to be. I feel very nervous and scare.

Sylvia1
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Aug 15, 2020 09:45PM Colleen_2 wrote:

I meet with my surgeon on Monday too but to set a date for surgery. I had a phone meeting at the beginning of the week with her and she discussed all of my options. Given my family history I decided to go with a double mastectomy and no reconstruction. That’s my decision though. I am here for you if you want to talk about it. Hugs to you

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Aug 16, 2020 07:15AM LivinLife wrote:

Yes, Colleen, tough decision! It is the same decision I just made after much exploration, including reading and feedback from this site. Hopefully you're feeling some relief having actually made a decision even while other stress obviously remains. Welcome to Sylvia1 as well though as we also say - sorry you have to be here. I wish both of you well! Please keep us up on your respective journeys. I will do the same...It is great having people who have been there and understand even if there are differences in our experiences too.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 19, 2020 09:43AM Colleen_2 wrote:

I had my appointment on Monday with my surgeon. I feel very comfortable with her because she is the same surgeon who performed my moms double mastectomy and she did a great job. My surgery is scheduled for next Friday, August 28th. This is all happening so fast but am thankful for that as the anxiety has been pretty high since the phone call saying I had DCIS.

How did your appointment go Sylvia 1?

How are you doing LivinLife?

My thoughts and prayers to you both. Gentle hugs.

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Aug 19, 2020 11:01AM LivinLife wrote:

Wow! That is right around the corner and yes, fast, in the grand scheme of things. I'm so glad you're familiar and comfortable with your surgeon given your mom's experience. That has to help a lot! My surgery is scheduled for Aug. 31 with a fairly full day of pre-op appointments Aug. 28. I meet the hematologist/oncologist this afternoon. It's just via phone call since I don't have (or want) a Smart Phone and she apparently didn't set up a Zoom appointment. An AI won't do me any good and the estrogen percentage Cleveland Clinic just came up with was 2% vs. the 5% my local hospital had me at (P was <5%). Certainly hoping nothing else develops and I don't need chemo though it makes sense to meet with her today. Best with your surgery!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 21, 2020 11:29AM Colleen_2 wrote:

LivinLife, how did your appointment go with hematologist/oncologist? I’ve been thinking about you. I have my pre-op on Monday. Keep me updated as to how you’re doing. Gentle hugs

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Aug 21, 2020 01:14PM LivinLife wrote:

Oh Colleen... thanks for asking! She was fantastic! Sooooo personable and interested in getting to know ME - she carried her phone around trying to find a computer with a camera on it so she "could see me." - I don't have a Smart Phone (and don't want one either!) - she carried me around for 13 minutes until she could get set up with a lap top with a camera. It didn't bother me in the least if it was just a phone call... She was very engaging and attentive and told me she had a sense of "who I am." That was really important to her before we talked about DCIS or any treatment. Kind of surprised me.... She agreed no endocrine therapy due to being sooo low estrogen positive (2%) and there was some discussion of why I would anyways due to BMX - though I think if my estrogen receptor was quite a bit higher she would have recommended it - she said something about if it were 30%....???? So she will meet with me 3-4 weeks after my surgery when pathology is back.

She is also a hematologist and I've had some red blood cell level issues for about a year now that no-one else wants to pay attention to - she knew exactly what I was concerned about and is ordering yet another genetic blood test for what could be kind of like a blood cancer though not like typical leukemia.... I'll get that done at the same time as the multi-gene cancer panel... All that on pre-op day next Friday. I'll be going from 9 a.m. through 3 p.m. and unfortunately driving to three facilities for all these appointments - not thrilled about that though they are all within about 10-18 minutes from each other.... just how it worked out...

Let us know how the pre-op appointments go! Best to you and gentle hugs back!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 21, 2020 06:25PM Colleen_2 wrote:

It sounds like you’re in great hands. I’m so happy to hear that. Good luck with everything on Friday. I may forget to ask how your appointments went because that is my surgery day so let me know how you make out. I will try to remember to let you know how pre-op goes

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Aug 24, 2020 07:25AM LivinLife wrote:

Best with pre-op today Colleen! Let us know how things go....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 24, 2020 03:08PM Colleen_2 wrote:

Thank you. Pre-op went good. I had to do a Covid test. On Friday my husband can come with me until I get called for surgery and then he has to leave the hospital. I’m not allowed any visitors while I’m in the hospital. I’m glad I’m just there for one night. Everything went fairly quickly and smoothly. They showed me what the drains look like and how to look after them. They did an EKG and asked questions and went over everything. It was good.

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Aug 24, 2020 05:20PM LivinLife wrote:

I'm so glad it went so well Colleen! I hope your surgery goes as well. It is weird with all this COVID stuff - restrictions, etc. I have to have a test Friday for Monday's surgery as well. I think they're doing that for so many procedures and surgeries now... I live alone though a friend of mine from Wisconsin is going to meet me in Cleveland for my surgery. I just told her today she should just leave the hospital when they take me back for surgery and just keep her phone next to her the next handful of hours. From what you just said that may be her only choice. I'm must thankful she has kept herself COVID safe so she will drive me back to central PA and stay for a couple of weeks too.

I hope your husband will look after you well with anything you need. I have others in this area that will bring food and help out with other errand kinds of things as needed - shouldn't need much really. With COVID though I also don't want much contact with others. I only go like 3 places though I go to each about twice per week - no social stuff so I don't want other people's risks, esp. just before or just after surgery. Be careful and I wish you the best for Friday! Did your BS tell you how long the surgery will take? I don't recall my surgeon mentioning though she may Friday when we meet again. I looked it up on-line and said 4-6 hours for a BMX!!! I had 1-2 hours in my head before looking that up LOL - wishful thinking!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 24, 2020 06:47PM Colleen_2 wrote:

I’m glad to hear you have a friend that’s going to stay with you and lots of support. That’s important. I’m very lucky that way too. I have a very good support system as well. I also am limiting my contact with people before and after surgery. My BS said the surgery will be just over 2 hours. She doesn’t have to remove any lymph nodes she said. I’m also not having any reconstruction. Hopefully yours will be the same. Hopefully your appointments go smoothly Friday. Gentle hugs!

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Aug 25, 2020 05:54AM LivinLife wrote:

Thanks Colleen. Good to know on the 2 hours too. I'm having SNB so that may add a little time, likely not much. I go in at 7:00 a.m. for the injection. Won't know my actual surgery time until Friday afternoon. The 4-6 hours I saw on-line may have included recovery time too?

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 27, 2020 06:06AM LivinLife wrote:

Just want to wish you well again on your surgery tomorrow! I don't know if I'll be on here later today though may be? I'm heading to Ohio later today....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 27, 2020 10:52AM Colleen_2 wrote:

Thank you very much and good luck with your appointments tomorrow

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Aug 27, 2020 06:10PM LivinLife wrote:

Thanks so much!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 2, 2020 07:05PM LivinLife wrote:

Hi Colleen! Wondering how you are doing and feeling?

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 2, 2020 07:14PM Colleen_2 wrote:

Hello. I’m doing good thank you. I don’t have any pain. Just discomfort from the drains. Hopefully the drains will be coming out this Friday. How did your appointments go on Friday

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Sep 3, 2020 07:23AM LivinLife wrote:

I'm glad you are doing well. The appointments all went well. I actually had my surgery on Monday. That went about 5 1/2 hours which was 2 hours longer than the BS planned though she said all went well? No cancer in any sentinel node. Waiting on pathology. I spent a night in the hospital and then a friend drove me home. I have not had pain either - only using Acetaminophen and Ibuprofen every other three hours for each - keeping them rotating that way more for prevention.

The drive home (4 hours) was good too - I expected a lot of discomfort and just did not have much. The drains are not painful or uncomfortable at all for me other than lugging them around. They have these sealed down to my skin tightly which I think is making the difference. My drains are not draining much and less each day - I'm hopeful I can get mine out Tuesday when I go for post-op. My friend helped me strip each one yesterday. I'm actually going to work a few hours by phone today. One hour of work then 1 1/2 hour break then about another 1 hour 45 minutes - we'll see how that goes - I may need to cut things a little shorter.

I'm doing a lot independently though not doing much of anything. I'm so surprised I'm doing this well. Medical staff were so surprised and impressed....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 3, 2020 01:01PM Colleen_2 wrote:

I’m so sorry I forgot your surgery was Monday. I’m glad to hear you’re doing well. I have been very surprised at how well the recovery has been going. I have a nurse coming to the house tomorrow and she will hopefully be taking my drains out as there has been little drainage. I don’t have my post op appointment with my surgeon until the 18th. Good luck with your post op appointment and keep me posted

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Sep 3, 2020 02:41PM LivinLife wrote:

Oh Colleen - not to worry! You've had a lot on your plate with pre-ops and surgery! Thanks for well wishes on post-op - I think it's strange they are having me come back so soon... I hope I can then have whichever drains remain after Tuesday removed locally - don't want to drive 4 hours again to have the one or two remaining removed the following week...

Glad your recovery is going well! Sounds like you're expecting to have all your drains removed - hope you're doing well enough for that to happen when the nurse visits!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 3, 2020 07:45PM Colleen_2 wrote:

Hopefully they can take all of your drains out on Tuesday and save you an extra trip. I have a nurse that comes to the house every few days and she seemed hopeful that she would be able to remove them all tomorrow. I said my appointment with the surgeon is on the 18th but it’s the 16th. I have an appointment with genetics on the 18th. I was mixed up.

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Sep 4, 2020 06:34AM LivinLife wrote:

My BS had to go on medical leave... I feel for her and am thankful she was able to do my surgery before her leave began. that being said I messaged her P.A. yesterday about the drains and the 4 hour drive. Only two of them are consistently putting out less than 30 ml - she said that needs to occur two consecutive days prior to removal. One of the drains isn't close really and the other is really trying so might be ready by Tuesday? I'm lugging around a wound vac too that will be done Monday at some point. I will ask about the other drains being removed at my PCP's office or something since I'm pretty sure I'll still have one or two after Tuesday. I'd hope that would be all right....? At the same time my car is still at my nephew's in the Cleveland area. I won't be driving that home Tuesday so still do need to make another trip into Ohio for my car. It will all work out... these are the smaller things at this point really. Surgery over and waiting on pathology.... Sounds like your recovery continues going well!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 4, 2020 04:02PM Colleen_2 wrote:

I am drain free. It feels so good. I really hope that all of yours are ready to come out by Tuesday. I will be keeping you in my prayers. Hugs

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Sep 4, 2020 07:00PM LivinLife wrote:

Congrats Colleen! So happy for you. I believe I will be left with one drain at least after the appointment Tuesday. I will be able to disconnect from the larger wound vac Monday and will have at least two drains removed Tuesday so that will feel great! I'll keep you posted....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 9, 2020 10:05AM Colleen_2 wrote:

LivinLife, I just wanted to check in and see how you made out at your appointment yesterday. Were you able to get most of your drains out? How are you feeling

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