Stuck mid-way due to poor advice and timing, what's best now?

[gail23]

I am 50 and in 2000 had lumpectomy & radiation on rt breast for DCIS. In Dec 03 I was diagnosed with invasive lobular in the lt breast and had mastectomy, axillary and am doing chemo (no radiation). The general surgeon & plastic surgeon that I saw prior to mastectomy suggested a skin sparing mastectomy could be done in preparation for future implant on lt breast after 6 mo. chemo so that is what I did. (I'm too thin for flaps). AFTER my mastectomy, the surgeon advised this type cancer has equal probability of occurring in my rt breast. Had he told me this BEFORE I would have taken both breasts at same time to eliminate risk & number of surgeries. Now I am apparently stuck half way with this ugly skin sparing mastectomy. It does not make sense to reconstruct left breast and not be able to do the rt breast if I now lose it to cancer or remove it for protection. My plastic surgeon will NOT reconstruct the rt breast because it was radiated. The doctors did not advise of any time limits or issues with skin sparing but I have since read it should not be done and left for a long period. Am I just doomed to live with this ugly skin sparing procedure? Can it be reversed to not be so ugly and then I just use prosthesis instead of reconstruct? If so is that the most cosmetic option for me? What are the risks & issues? It would seem to me that the Drs should have known from the initial biopsy before the mastectomy that losing the 2nd breast was a very likely possibility and should have warned I would probably need to reconstruct both breasts and only be able to do one. Any suggestions?

[CCF-RN,MSN-JS]

Dear Gail23, Invasive lobular breast cancer is generally no more serious than other types of breast cancer. However, it is sometimes found in both breasts at the same time and there is also a slightly greater risk of it occurring in the opposite breast at a later date.  This does not mean that cancer will recur in the opposite breast.  You have had treatment to the other breast (radiation) and the reason for doing so would be to decrease chance of recurrence.  

You have options of what to do now; to proceed with the reconstruction, or having the extra skin removed and using a prosthesis.  You should revisit the discussion of these procedures with your plastic surgeon (or another plastic surgeon if you have lost confidence in him or her).  They would be best equipped to give information about the expected cosmetic results as well as the risks of either procedure.

[Samct]

I had a skin sparing mastectomy in January, with tissue expander inserted immediately. I'll be having radiotherapy soon, and then will have the expander replaced with a permanent implant. My surgeons don't seem too concerned about reconstruction after radiation. I've read that more complications occur with expander/implant reconstruction after radiation, but it seems to be done routinely anyway. Your case is slightly different in that radiation was done before the mastectomy though.

[surgeon]

DCIS, which I gather you had first, is not a condition for which treatment of the oppposite side is routinely recommended. Lobular invasive, which you had on the second side, is a different thing; it indeed has more tendency to be bilateral, but even so, it's not considered carved in stone that the opposite breast should be treated when lobular invasive cancer is found. To say there's "equal probability" of it occurring on the other side is a somewhat confusing way to put it. That doesn't mean it WILL occur; not by a long shot! I suppose it's accurate, if confusing, to say it: but your odds of getting it on the one side were, say, one in eighty (based on the idea that one in 8 or 10 women get breast cancer, and 15% of those are lobular. So, does he mean there's a one in eighty chance of getting it on the other side?? Moreover, having had treatment of the first breast ought to reduce the chance of getting cancer in it. So it seems to me you have a very good option: have the reconstruction (implant) as planned, and follow the remaining breast regularly as you would have anyway. There's some risk of getting cancer in it, which is true even if you'd not have gotten cancer in the other breast. If that occurs, mastectomy would be required. If so, then at that time you'd have the option of using a prosthesis on that side; it's also possible another plastic surgeon would have other options to offer at that time as well.

[gail23]

Thank you very much for your assessment and if possible could you provide additional clarification in regards to the following:
Your comments seemed to be based on assuming an optimistic outcome.  I am less optimistic with my 2nd occurrence of cancer than with the first and feel that because lobular invasive tends to be bilateral that I will sooner or later get that cancer in the right breast also unless I have it removed. As I understand it any protection from the radiation wears off over time. I already have lypmph nodes removed on the left side, have under arm swelling and am at risk for infection and lymphodema and would like to avoid that situation on the right side. 'Monitoring' as a means of prevention for me has not proved very effective (too little, too late). If I don't want to reconstruct the left side as planned because I may not be able to find a surgeon who will also reconstruct the right side if necessary because it was radiated, can you comment on the possibility of 'undoing' the skin sparing procedure I've had done so that it is less ugly? I would then just use a prosthesis instead of reconstruct. If the skin sparing can be 'undone' would that prevent reconstruction in the future if my situation changed?

[rkmsim]

Please don't give up on your hopes for reconstruction.  I had bilateral breast cancer with lumpectomies on both sides, chemo and radiation.  I am scheduled for a bilateral mastectomy (skin sparing) with immediate DIEP reconstruction next month.  Many women successfully have reconstruction following radiation.  If you don't have enough abdominal tissue for reconstruction, perhaps you could go with a GAP. I found a lot of good information from www.facingourrisk.org on the message board from ladies who have had reconstruction.  After a lot of research I have selected a surgeon out of state who has the training for DIEP. Keep researching.  I expect you will find you have many of options.  I was told by some of my doctors here in town that I shouldn't have reconstruction due to radiation but after checking further I found that, while healing may be a little more difficult, there are many women who have had reconstruction after radiation treatment. I have found out, though, that implants are best done BEFORE radiation and flaps are best done AFTER radiation.

[gail23]

Thank you for the information and encouragement. I am almost 5'6" and weigh about 115 lbs so I don't think a GAP would be possible either - just too thin. As you said implants are apparently better to be done before radiation but I don't have that option on the right breast and that may cause too many problems for any surgeon to see an implant as a reasonable option. Also anybody that I have heard of having skin sparing done always had the reconstruction done immediately at same time - they weren't told to wait a half a yr as I was until chemo etc were done and I think the wait is very bad for the result. Due to the procedures being very expense, the only way I can even consider reconstruction was to find a plastic surgeon that is in network for my medical insurance. That left me with very few choices locally and I didn't realize at the time that there was such a wide range of reconstruction options and that not all plastic surgeons did them all or did them the same way. I realize now that I need(ed) advice from a doctor(s) with much broader experience but don't exactly know how to find a well known facility that is on my medical plan. If I went out of my area, wouldn't I have to keep traveling back and forth to get the expanders adjusted and then replaced with permanent implants? From your research are you aware of any facilities that specialize in reconstruction that you would care to share that might be worth looking into? I am just really upset because I feel like I've totally messed things up by doing this stepwise as suggested rather than a complete solution for both breasts at one time in one surgery.

[carlychan]

Hello,

I just wanted to share my expierence with skin sparing mastectomy and reconstruction.  I had my first skin-sparing mastectomy in June 03.  After chemo and readiation (Dec. 03)I had a hysterectomy and a skin sparing mastectomy on the remaining breast.  Then in May 04 I had reconstruction with a Lat flap and implants.  I too am thin (5'5''/115 lbs) so a tram wasn't an option.  I am very happy with the results I got from the lat flap reconstruction.  My breasts look very good.  I am sure you can find a surgeon to reconstruct after rads.  Good luck!

carlychan

[gail23]

Thank you all for sharing your experiences and for the helpful comments! I am realizing that I probably live in too small of a town to have access to experienced and highly qualified surgeons that offer many of the procedures that have been mentioned. I live in Florida and was wondering if anyone could suggest some facilities in that area of the country (or else where) that would be a good place to get an expert reconstruction evaluation?

[Belleview Teacher]

Depending on where you live in the state, Florida has some excellent cancer facilities that have plastic surgeons available that specialize in breast reconstruction.  I have been treated for my BC at the Moffitt Cancer Center in Tampa.  I have an appointment at the end of this month to see a plastic surgeon about reconstruction.  Orlando has the M.D. Anderson Cancer Center and there is an excellent program at Jackson Memorial Hospital in Miami. Depending on where you live, one of these places may be good for you.  I travel an hour and a half to get to the Moffitt Center,but feel it is well worth it to see specialists who deal with BC every day.

[motherof2insouthernflorida]

I live in Southern Florida, I'm actually preparing to have reconstruction DIEP flap and reduction surgery at the end of this month.  I too had a hard time finding a good plastic surgeon in this area that my insurance company covered.  I'm actually using the plastic surgeons at the Cleveland Clinic in Weston.  Have you gone to any of your local cancer support groups and asked the people there what options they took and who they used as a plastic surgeon.  That's what I did, although, I'm not taking their advice.  Most of them recommended and had implants, but I'm only 38, and most implants last about 5-7 years, so I'm hoping that I have beaten this terrible disease and that I live for at least another 20-30 years.  With that being said, I don't want to have to go back another 4-6 times to have surgury to replace/repair or correct problems with an implant.  That's why I've chosen the DIEP flap, it's permanent.