Received DCIS Diagnosis - Doctor Visits - Comments Invited

BlairK

Dear Caryn - Thank you for your post.  My wife is rising to the occasion after the initial shock.  She was very involved in our doctor visits and asked a lot of good questions.  She went to some additional doctor meetings and a BC support group yesterday without me since I am back in China.  I think she started reading the Breast Cancer Treatment Handbook.  The final decisions are up to my wife now.  In terms of the MRI, it is an additional diagnostic test which has the potential to provide additional useful information.  If it should detect cancer in the good breast then my wife will have another decision to make regarding the other breast.  It will not change the fundamental decision parameters for lumpectomy versus mastectomy.  My wife appears to be leaning toward the mastectomy option and hopes to avoid radiation (10 percent chance), chemotherapy (2 percent chance and only of sentinel node biopsy is postive) and additional operations (this would depend on reconstruction approach chosen).  My hope with the MRI of the cancer (bad) breast is that it could show the overall extent of the disease prior to surgery.  My wife met with a second reconstruction surgeon and I do not know her thoughts yet since I am in China.  We both are happy with the BC surgeon and I am sure either reconstruction surgeon will be fine - my wife will make the choice.  I think most of the women on this bulletin board have had strong opinions in favor of MRIs and the value of a MRI prior to surgery - especially the widely-revered Beesie.  So at the end of the day, whatever my wife feels comfortable with and decides will be fine with me.  I am sure there will be other decision points and decisions that will be need to made in the future. I will keep everybody posted.

sweatyspice

If your wife has already decided to have a mastectomy, the MRI of the breast which will be removed is probably not all that important. 

(I'd drive the 90 minutes to Philly or NY, but that's just me.  I like Philly, New York, and Comprehensive Cancer Centers.) 

BlairK

Dear Sweaty Spice - I am back in China.  Through the miracle of Skype, I just had a video conference with my wife.  My wife is OK with the MRI of the good breast so at this point I am NOT going to beat a dead horse.  We feel comfortable with the BC surgeon.  My wife likes the second reconstruction surgeon better and he is authorized to do gummy implants and has been doing them for over ten years.  She likes the gummy implant option the best.  The second reconstruction surgeon is authorized and monitored by the FDA to do gummy implants.  She also liked his careful explanations with various charts.  My wife appears to have benefited tremendously from the Breast Cancer support group which contained 10 women.  The 10 women were in various stages of BC from diagnosis to post-surgical and from Stage 0 to Stage 4.  A couple of the women had chemotherapy and had lost their hair.  One of the women had post-surgical complications including a blood clot in the lung (I can relate to that as I had the same thing - a blood clot in my lung post surgery).  So I think the decision process is getting close to finished.  Hopefully the "good" breast will not have cancer.  If this is the case, then the surgery date will be scheduled next week and will probably occur mid-October during the second half of October.  I will stay in the US and stay at home during this period to take care of my wife.  I hope the posts will continue and also I will post any additional questions.    By the way, I seem to be the only man on the bulletin board.  I do not see any other husbands posting on behalf of their wife.

thankful4life

Blair, I wanted to let you know that I had MRI of both breasts after ILC was found on left side. I then initially had a lumpectomy but did not have clear margins. Then went in for another lumpectomy, but this was cancelled at the last minute due to me having cellulitis. After that, I finally decided to have bilateral mastectomy. This was skin-sparing but not nipple-sparing. Surgeon called me one week after mastectomy (and immediate free-TRAM reconstruction) to tell me that more cancer had been found in left breast (DCIS in nipple and also Paget's disease of breast). None of this had been seen when they did the MRI. So even though MRIs are good tools, in my case the MRI did NOT show the additional cancers



You and your are in my prayers.

BlairK

Dear saf1017 - Thank you for your post.  My wife is in good spirits and OK with her upcoming decisions.  My wife will have the MRI on her "good" breast.  We are aware that MRIs can yield false positive results and can miss things.  Since me (the husband) has been the one on the bulletin board, I was very gung ho for the MRI of both breasts but both the BC surgeon and reconstruction surgeon do not think it is necessary.  The BC surgeon is willing to order an MRI on the good breast and this will be performed on Friday.  Next week the surgery date for mastectomy and immediate reconstruction will be schedule for some time in the second half of October.  My wife went to a BC support group and seems to have benefited immensely from speaking to ten other women who have breast cancer.  The bulletin board has been the most useful for me as the husband of somebody recently diagnosed with breast cancer and as someone who loves to do research and gather information.  But I think also going to a support group and meeting and talking to live people can have a lot of benefits - this seems to be the case for my wife.  I am also learning that although the bulletin board is a tremendous resource, there is no substitute for a doctor's experience and judgement.  The BC surgeon has 16 years of experience and the reconstruction surgeon has over 25 years of experience.  That is over 40 years of experience working to help my wife get better and beat breast cancer.  So I am not a doctor and if my wife feels comfortable and as it should be is making the decisions, then I am comfortable with it - even the part about MRIs.  Please let us know how you are doing.

jbennett38

blair - I agree with sweatyspice about the MRI on the affected breast.  If she has definitely decided to have the MX, they will take ALL breast tissue, so it is not really an issue.  I'm glad your wife is doing better emotionally.  

BlairK

Dear jbennett38 - My wife's decision is to have MRI on good breast only.  I just had a Skype video conference and a mastectomy is my wife's decision.  The MRI will be Friday on the good breast.  The surgery date will be decided next week for October.  My wife is doing well.  She went to a BC support group and benefited immensely.  She likes the BC support and talking to live to BC patients.  I like using this bulletin board.  Between Cycle-Path, Beesie, Sweaty Spice, iLUV2knit and all the others, I feel like I know everybody even though it is only written communication.  So the bulletin board has helped me a lot.  I am back in Beijing and can have daily video conferences with my wife through Skype.  Please keep the posts coming.

xtine

Blair - I had perhaps a similar situation, in that I ended up with a uni mx and gummy implant (I also had an MRI on both breasts prior to surgery, which gave me confidence in my plan). I'm as pleased as I can be with the gummy (which was done as part of a study). I think it looks pretty symetrical and is very comfortable. There is a thread on the reconstruction forum called "all about gummies" that you can look at. But I think it's a good option, and seems to avoid a lot of problems people complain about with implants. Please feel free to contact me if you have further questions about the gummy.

BlairK

Dear xtine - Greetings from Beijing.  Thank you for this valuable post.  I hope anyone else reading my thread who has had a gummy implant will write a post to me.  My wife told me that the women at her Breast Cancer Support Group who had a silicon/saline implant with a tissue expander complained that it was very painful and a very long process.  I will read the thread on gummies.  Please take care and let me know how you are doing.

xtine

The tissue expander was annoying and painful.. I think that applies regardless of your implant type. But I feel that the end result is nicer than saline (or normal silicone), and you might have a better chance of getting it right the first time, rather than need a revision. Also, people tend to have an easier time with the expander if they did not have radiation.

Also - she might ask about whether she can do a nipple-sparing mastectomy, which would avoid more surgery for nipple reconstruction (with likely not as good a result as you'd like). I was not a candidate, but there are a lot of women who had this option and were pleased with the results. An MRI might be very helpful in determining if this is an option, as it can see how close the cancer is to the nipple (my MRI ruled it out).

Beesie

Blair,

It sounds as though your wife is doing really well, understands the issues and the options, and is making her decisions.  That's great!

So I have two points of clarification only:  

The first references something that you said a few days ago. Just to clarify, the gummy implant is silicone.  The two main differences the gummy has vs. the standard silicone implants used in the U.S. are 1) the gummy is more cohesive; this also means that it's firmer and therefore, it feels a little less like a soft natural breast and 2) the gummy is anatomically shaped (a tear-drop shape vs. round for saline and the other silicone implants) and therefore the surface is textured so that the implant 'sticks' in place and doesn't shift or rotate.  Some believe that the tear-drop shape gives a more natural appearance, but if the implant rotates (which can happen), then the appearance can be a bit 'off'.

The second references a comment you made above:  "My wife appears to be leaning toward the mastectomy option and hopes to avoid radiation (10 percent chance), chemotherapy (2 percent chance and only of sentinel node biopsy is postive) and additional operations (this would depend on reconstruction approach chosen). "  Your wife should understand that whether or not chemo is required has nothing to do with the type of surgery she has (a mastectomy vs. a lumpectomy). Chemo may be required if some invasive cancer is found within the area of cancer and/or if cancer is found in the nodes.  Even a small amount of invasive cancer (without nodal involvement), if it is particularly aggressive, could lead to a recommendation of chemo.  On the other hand, a larger amount of invasive cancer that is less aggressive might lead to a recommendation of hormone therapy rather than chemo.  Based on the initial pathology of your wife's biopsy (DCIS only), I would think that the 2% risk of needing chemo is probably about right but it's important to know that if it's determined that chemo is necessary, having a mastectomy won't make any difference at all. 

BlairK

Dear Beesie - Thanks for your post.  I found a bunch of non-technical articles on Gummy implants (of the FAQ variety) and e-mailed them to my wife.  Someone also directed me to a thread on Gummy Implants with 933 posts.  With radiation and chemo, everything is going to depend on the results of the surgery and the pathology report.  So nothing can be done.  All options for surgery and reconstruction have risks so we will just have to wait until after the surgery.  I think my wife has come to close to making all her surgery and reconstruction decisions pending the result of the MRI of the good breast.

pinkstinx

hi..is the brca the blood test for the gene..or something else..the more i read, the less i seem to know, or have been told by the doctors.

thanks

i have dcis  high grade/ her2+ 

cycle-path

Blair, the best news I've seen from you was above when you said your wife was in good spirits. 

BlairK

Dear pinkstinx - The BRCA test is for the breast cancer gene.  Our doctor said it was not necessary for my wife as she had no prior family history of breast cancer.  There should be threads on it somewhere.

BlairK

Dear cycle-path - I am in Beijing and just spoke to my wife.  She is in good spirits and after the results of the good breast MRI, she will schedule the mastectomy with immediate reconstruction with gummy implants.  My wife is enthusiastic about her support group.  I appreciate the bulletin board very much although I have probably over-analyzed everything.  I will continue to read any posts and update the board later after my wife's surgery.