Received DCIS Diagnosis - IT JUST GOT WORSE - Comments Invited

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Thank you jbennett38 - It is now Monday 10/17.  My wife is resting.  I poured out and measured the four drains and wrote down the amounts.  I made sure she took colace stool softener and antibiotics.  Pain frequency is a little more so maybe Percocet now twice a day - before sleep and when waking up.  Our 8-year son had a crying reaction before going to bed - maybe it all caught up with him.  My 6-year daughter seems OK.  Today is a day of rest and sleep for my wife.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    Hang in there Blair.  You are doing a great job.  My hubby took care of my drains and meds and pretty much everything for me for about the first week.  Even after I was capable of doing stuff he continued to dote on me.  He was and will always be my knight in shining armour!  

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer - Things for now are going very well.  My wife is resting all day in the big armchair in the living room with big screen TV and phone and blackberry.  Her pain for now seems to be less than what I had expected.  Our two children can also be in the living room with her after they get home from school and they know not to touch her.  They can do their homework and reading.  I am going out and running all the errands.  There will be a visit to the plastic surgeon tomorrow.  Once the drains come out, then we will have the visit to the breast surgeon and final pathology report.  USA Today seems to have an article on breast cancer every Monday so I gave the last two Monday editions to my wife to read.  I will empty her drains so I can measure them and see if it is the same or less.  I got note on another husband but can't find it.  I think that was from cycle-path.  Better to just say topic and name of the thread and the user ID.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    Blair, the other husband is "HusbandAfraid"  and the thread is "Overwhelming Feelings" in the Surgery forum.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    Glad to hear things are going so well!  

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear cycle-path - I wil find it and write a post to his thread.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer - Yes things are going well.  And my wife is even getting on my case a lot like she did prior to surgery so I know she has recovered quite nicely.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    It is now Wednesday October 19th.  Tomorrow one set of surgical drains (the "A" drains on each side) should be removed by the plastic surgeon.  Next Tuesday, the other set of surgical drains (the "B" drains on each side) should be removed by the plastic surgeon.  On Thursday October 27 we will meet with the breast surgeon to discuss the final pathology report.  I am hoping that radiation will not be necessary.  For some reason, the breast surgeon after surgery was confident that it will NOT be necessary but I will wait for the final pathology report.  For those who have posted on my thread and who have had a double mastectomy, did you have to have radiation or were you able to avoid it.  That would be helpful and appreciated.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2011

    I had a bmx but my final path report showed 1 positive node so after chemo, rads may be in the cards for me. All future treatment decisions hinge on the final path report.

    Caryn

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    Radiation after BMX for DCIS only is rare, but becoming a bit more common for those with close margins, so you will want to ask about margin status.  See this report for more details:  

    https://www.cancerfacts.com/home_studyreport.asp?cb=266&litid=374 

    I am currently awaiting a second opinion on my pathology due to my posterior margin being "close".   

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  • kmpod
    kmpod Member Posts: 234
    edited October 2011

    I have had a BMX, Blair, but it was done in two stages, not one. One almost 12 weeks ago and one almost 2 weeks ago. The drains are still in place on the more recent side. Drains get old really fast, I have to say.

     You won't really know about radiation until the path results are in. (And, boy, that's the longest wait ever).  I was told prior to surgery that 1% of mastectomies require radiation. It will all depend on margins, nodes etc. It's a classic "hope for the best but prepare for the worst" situation. Just remember the odds are on your side.

    I was one of the fortunate - no radiation, no chemo, five years of Arimidex.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear exbrnxgrl - We have to wait another 8 days to meet with the Breast Surgeon.  She will only discuss the final pathology report after the Plastic Surgeon has removed all the drains.  So I will have to distract myself and my wife so the time will go quickly.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer - Thanks for the report.  I guess we just have to wait until Thursday 10/27.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear kmpod - Thanks for the post.  The sentinel node biopsies were normal (negative).  You are right, the wait is long.  I wasn't thinking about it before but now I am.  Our Breast Surgeon said 10 percent of mastectomies require radiation.  I am the one who is emptying out my wife's drains, writing down the drainage amounts, flushing the blood and other liquids down the toilet, spraying Lysol in the bathroom, so I know what it is like.  And my wife can't take a shower until the drains come out.  My wife is getting very grouchy and moody.  I guess I just have to be patient.  My wife's DCIS is ER positive so I would guess that she is going to be a candidate for Tamoxifen.  Thanks a lot for your post.  This is very helpful and appreciated.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer - I read the report you included in your post.  My wife has Grade 2 DCIS and also the right breast had comedonecrosis but the left breast was non-comedo type.  I have no idea about the tumor size in each breast and the surgical margins until the final pathology report comes back.  Thanks again for sending the report.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    BlairK ~ to answer your question...I had a bilateral mastectomy and did not have to do radiation (and I had IDC).  The drains are a pain, but I was lucky to have a dutiful drain emptier, measurer, cleaner husband like you. :)  I remember one of the times as he's siphoning the oh so lovely fluids from my body... I asked him if he ever envisioned this scenario when he vowed "for better or worse". Tongue out I think we laughed together more through this whole ordeal than we cried.  Humor helped us alot.

    Not being able to take a shower made me grouchy and moody too (oh yeah.. and also getting my breasts removed).Wink  

    Keep doing what you are doing and try to let her experience her emotions.  One thing I did (after both my surgeries) was go to an inexpensive hair salon and get my hair washed and blow dried when I couldn't take a shower.  Made me feel so much better! 

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited October 2011
    BlairK,  Negative sentinel nodes is excellent news!  We will all keep our fingers crossed that you receive additional good news on the 27th.
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  • kmpod
    kmpod Member Posts: 234
    edited October 2011

     Hi again, Blair,

    Every surgeon has different instructions it seems. 

    I'd be very grouchy and moody too if I'd been told not to shower until my drains were out. Nothing, absolutely nothing, feels better than that first shower. It somehow cleanses the spirit as well as the body.

    I've found what's working well for me this time (it helps to have some prior experience) is to have the drain tubes anchored with some (non-allergenic) surgical tape so they don't shift around as I move but to leave the area where the drains exit the skin uncovered so it remains able to "air dry'.  I've been showering since third day post-surgery with absolutely no problem developing - not even a bit of inflammation around the tube exits. I've also had no antibiotics, neither at the time of surgery nor post-surgically.  I've also had no reconstruction and that may make a difference.

    Another small hint that's working for me - even prior to drain removal, I'm most comfortable in a cotton/spandex camisole that provides a very modest amount of compression. I stepped into it and pulled it up until the time I could fully lift my arms - with DH's assistance of course. 

    By the way, I was very happy I did have the second mastectomy. I got my path report today and there were several foci of ADH. Problems just waiting to happen. The surgeon said I did the right thing. 

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    Blair, has your wife gone to the hairstylist to get her hair washed? If not, that might perk her up a little.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    I wasn't allowed to get my bandages or drains wet either until the drains were removed.  So we came up with a "work-around"...took a bag, cut a hole in it, then DH pulled it over my head and completely down over my arms/chest.  Then we put a towel around my neck to make sure no water leaked through.  Then...the shower!!!  Yay!  (with help from DH of course).   It felt so fantastic to get my hair washed and really lifted my spirits.   We also had to be careful removing the towel and bag afterwards to make sure no water leaked down in.  Not that I'm recommending you do this and bend the rules...it's just what we figured out.  Oh, a waterproof jacket would work nicely too and would be even better b/c the arms could be free to move. 

    Regarding tamoxifen, my doc told me if I had a BMX and it was DCIS only, it would not be indicated b/c Tamoxifen is a systemic treatment that helps prevent recurrence and/or a new primary breast ca in the other breast.  I think if you had poor margins they still would most likely recommend rads since that is local to the area that is problematic.  I may be wrong, but that is my understanding of how it works. 

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited October 2011

    I was allowed to shower with my drains in. I can't remember how many days I to wait, however. It worked out well to change bandages after showers. I was in so much pain, however, it was nine days before I could wash my hair, so I imagine it was some days after that I could shower. My friend came over and we washed my hair in the kitchen sink and it was so painful, but I was in more pain than most women. I am still being treated in the pain clinic with drugs, nerve block shots, lidocain iv infusions, and sessions with a pain pyschologist. I was relseased after 6 months of pt for PMPS and scar tissue adhesions.

    There is some controversy regarding tamoxifen, dcis and double mastectomy. My onoclogist, the head of the oncology dept at a UW- Madison satellite teaching hospital told me that since dcis is only contained within the milk ducts and margins are clear with the milk ducts being removed on both sides, there is no need for taxmoxifen. He stated that any benefits would not outweigh the side effects.

    My surgeon, however, was more cautious and thought it would be better to take the tamoxifen.

    I am sure there are some posts on here by Beesie regarding tamoxifen, dcis and double mastectomy.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear SusansGarden - I went back to work today.  One of my wife's friends will drive her to the Plastic Surgeon.  I expect the "A" drains to be removed today.  I don't mind my duty of emptying and measuring the drains.  Right now, having to wait one more week for the final pathology report is making me a little nervous. 

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear kmpod - My wife complained about pain but also she is not taking the Percocet like she should.  She said one of her armpits hurts a lot and asked me if it was Lymphedema.  There was no swelling so I do not think it is Lymphedema.  I told her to discuss with the Plastic Surgeon today or call Breast Surgeon.  Apparently, I was asleep and she could not open the bottle.  So she took Tylenol instead.  My wife is scheduled to have 2 of the 4 drains removed today.  I went back to work today after being home since last Friday. 

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear cycle-path - My wife's sister-in-law washed and shampooed her hair.

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer and mycinnamon - I am not sure about Tamoxifen for my wife but I am sure we will hear about it soon.  I am not sure whether the Breast Surgeon will make those recommendations or whether we will need to start to go to an oncologist.  We still have one more week to go to get the final pathology report.  The Breast Surgeon said she waits until the drains are removed until she discusses the final pathology report and next steps.  I will start reading more on Tamoxifen and other medications.

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  • kmpod
    kmpod Member Posts: 234
    edited October 2011

    BlairK, I've come to the conclusion that the major source of pain I had post-surgically was the SNB site on the right side. 

    After the right surgery (SNB side) I used Tylenol #3's on a regular schedule for about a week but the soreness remained for over 4 weeks. I found that it didn't pay to be a hero. The best thing to do was to keep the pain from breaking through. I found I was most comfortable with a small pillow between my arm and trunk  to create a space that took all the pressure off my armpit. The hospital actually provided the pillow to me (pink, of course) in the goody bag they give to new breast cancer patients. It was my constant companion for all of that time.

    Now, after my surgery on the "good" left side, where there was no SNB, I've had more what I'd classify as discomfort rather than pain. I haven't required any pain medication since the day after the surgery and the pillow hasn't been required. 

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited October 2011

    BlairK,

    Hopefully your wife will discuss pain with the surgeon today.  We all grew up with the idea that you should only take medication when you couldn't stand the pain anymore.  But pain management theories have evolved, and the idea that we grew up with isn't the current one.

    I don't have all the details, but I believe the current theory includes the following ideas (others will be able to flesh this out, I'm sureSmile):

    • Healing is improved in the absence of pain.
    • Pain should be controlled, as it's harder to "rein it in" after it gets serious (reining it in only after it gets serious is the "old model").
    • Pain is "measured" using the 1 to 10 scale that your wife is no doubt too-familiar with at this point.  

    Hopefully, at her appointment, she will be discussing how/when one should take pain meds, and how/when not to take them.  

    Wishing for a (mostly) pain-free recovery,

    LisaAlissa 

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear kmpod and LisaAlissa - My wife just reported that the two drains have been removed.  So that is progress.  And also others can help me drive her to the doctor so I don't have to miss work.  Her complaints about pain come and go - sometimes she says everything is OK and sometimes she says there is pain.  She has been making do with sponge baths.  I hope the next week goes fast to Thursday October 27th when we hear about the final pathology report.  Thank you both for sharing your experiences and I hope you are both doing well.

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  • jbennett38
    jbennett38 Member Posts: 86
    edited October 2011

    Blair - good news that your wife is doing well.  I'm sure she is happy to have at least two of her drains removed.  They really are the worst part.  I was allowed to shower with my drains.  It is very strange how doctors differ with their instructions.  I find it weird that the breast surgeon won't go over the pathology report until after the drains come out? I don't see what one has to do with the other.  I work with a lady that had one of her drains in for 7 weeks.  

    I was ER+/PR+, had good margins, Grade 3 DCIS.  I do not have to have radiation or take Tamoxifin.  Hope this was helpful!

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    jbennett, you're making me jealous! My diagnosis was just about the same as yours, and while I only had IORT I was lucky that I had access to it. Otherwise I would have ended up with PBI or WBI. My docs would sort of like me to take Tamox but so far I'm not going for it. 

    What reason do your docs give for not "making" you do rads or take Tamox? 

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