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Medical Forum / Diseases and Disorders / Breast Cancer / July 2004mastectomy help
Hi, Im new here and desperate. I had a mastecomy in January, followed by chemo, and am currently in radiation. In December I am having a second mastectomy. At the same time I will have double reconstruction which will be a tissue expander added to the mastectomy but a tram done to the first mastectomy site where radiation has occured. Has anyone had this done, have infomformation, or can help me at all? I can not find a plastic surgeon around here (Mass) who I am happy with and I am feeling horribly fearful of this all. Thanks. > Hi, Im new here and desperate. I had a mastecomy in January, followed > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 4 lines] > can not find a plastic surgeon around here (Mass) who I am happy with > and I am feeling horribly fearful of this all. Thanks. I'm so sorry you're having such a difficult time -- it's hard when you aren't able to find a medical team that you feel comfortable with. I had bilateral mastectomies, but no reconstruction, so I'm afraid I can't help you on the pracical side of things. It seems you know that you don't necessarily have to do the reconstruction at the same time as the mastectomy, since that's what you've done with the first one. I know other here have experience with exampders and tram flap (though maybe no one with both), so I'll bet you'll get some practical info from them. Perhaps waiting until you find the right medical team, and you don't feel so rushed/stressed, might be a option? Beaming positive wishes at you, Ann T. Remove 'dontsendspam' from address to reply by email > > Hi, Im new here and desperate. I had a mastecomy in January, followed > > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 23 lines] > Ann T. > Remove 'dontsendspam' from address to reply by email Ann, Thanks so much for your help. I dont necessarily even need the mastectomy in December, its only prophylactic but I want this all to be done and over with. This has been the worst year of my life, Im only 23 and fighting this battle alone as my mother died a year ago and all my other femaile family members have been gone much longer. I want to leave this preferably all in 2004 although I know this never goes away, I just want to start fresh. But yes, I need a decent surgeon/team or there is no point in getting surgery. Ill keep searching, but my insurance isnt great so there isnt much choice here. thanks again, Liberty > > > Hi, Im new here and desperate. I had a mastecomy in January, followed > > > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 37 lines] > thanks again, > Liberty Have you gotten testing for the BRCA1and BRCA2 genes? If the family history is of breast and/or ovarian cancer, you might be positive. If so, that puts a premium on completing reproduction and opting for prophylactic oophorectomy as well as mastectomy. These genes are present in only a small percentage of women who have breast cancer, but create a very high risk of both breast and ovarian cancer without the prophylactic surgery. > Have you gotten testing for the BRCA1and BRCA2 genes? If the family history > is of breast and/or ovarian cancer, you might be positive. If so, that puts > a premium on completing reproduction and opting for prophylactic > oophorectomy as well as mastectomy. These genes are present in only a small > percentage of women who have breast cancer, but create a very high risk of > both breast and ovarian cancer without the prophylactic surgery. I had genetic counseling about a month ago. It costs $5000 for me to have it, which I dont have. So Im going to try to have my insurance provider cover it (not likely) and if they refuse then I have to apply for the assistance program and see if they will cover it. What do you mean by "that puts > a premium on completing reproduction". I am getting prophylactic mastectomy whether or not I have the gene mutations, but yes, then the quesion of oophorectomy will arise as well. I would like to have children which they said is possible to do before the oophorectomy in the next few years but my oncologist wants to put me on pills for the next 5 years so I will absolutly not get pregnant (hormones, etc, you know) so that sort of puts me in a spot where I pretty much cant have kids.. plus I may not be fertile now anyway. *sigh*. Oh, and after the genetic counseling and figuring out all that stuff they said there is a 95% chance that I have the gene.. so Im taking it to be that I do, I tend to be pesimistic as to not let myeslf down. > > Have you gotten testing for the BRCA1and BRCA2 genes? If the family history > > is of breast and/or ovarian cancer, you might be positive. If so, that puts [quoted text clipped - 19 lines] > they said there is a 95% chance that I have the gene.. so Im taking it > to be that I do, I tend to be pesimistic as to not let myeslf down. I think Sandy was saying you need to get childbearing over as soon as possible so that you can then discard your ovaries and the risk they carry. I'm not convinced your oncologist has thought it through. If you are likely BRCA positive, would it really be in your best interests to put off childbearing for five years just to do Tamoxifen, or is the benefit of Tam. more valuable than having children? (Depends mostly on how advanced your tumour was.) Delaying doesn't sound sensible to me. It might give the least risk of breast cancer recurrence, but I think it doesn't take into account ovarian cancer risk. I'd go back to him/her and ask the question about children specifically, so that you can weigh the risks directly against your desire for children. Of course if you turn out to be already infertile then you can go back to Plan A. If it were me (and if I were female) I'd want to try for a pregnancy before committing, I can't see any benefit in waiting. Of course there are little matters of partners and other practicalities to be considered too. For example your partner would run a risk of having to bring up the children alone if the dice fell against you. At the risk of offending, may I ask whether you are married (or in a stable relationship) (and if so, what your partner thinks) or whether the children project is still speculative? It makes a difference. An oncological second opinion might be in order here. It certainly isn't a simple decision. Tim Jackson > > > Have you gotten testing for the BRCA1and BRCA2 genes? If the family > history [quoted text clipped - 50 lines] > simple decision. > Tim Jackson Well said. > > I think Sandy was saying you need to get childbearing over as soon as > > possible so that you can then discard your ovaries and the risk they [quoted text clipped - 29 lines] > > Tim Jackson > Well said. Hi Tim, Ok please forgive me, but since I woke up Ive been in "chemobrain" stance and for me, that means inability to concentrate and focus so Ill try to explain myself to what I think you are saying. I only had the genetic counseling, not testing. This was VERY recent and have not spoken with my oncologist about it yet.I have an appointment with her in a few weeks, since Im done with chemo I get a two month break from her while I go through radiation unless I need her; otherwise I see the rad. oncology team. So the whole thing with Tamoxifen (or whatever she puts me on) is what we talked about a short time ago, before discussing everything with the genes. Im sure that if I do have the gene mutation then it will change what we've so far discussed. I am in a serious relationship and we are doing well, and I my hopes are for me to marry him, hes wonderful. We do want children but would not be able to have them within the next year or two anyway. I have been out of work since December because I have been HORRIBLY sick from the surgeries and chemo. He works but is trying to help pay for me and all my bills so that all the burden does not fall on my father, so we dont have anything saved at this point, this cancer has depleted us. So we want to wait until Im in good health to consider marriage. We both do want children but have already discussed it and if pregnancy is not an option we would both love to adopt. I would prefer to have children, or at least one, so Im not really wanting to jump into removing everythign right now. Plus I dont know for sure if I even have the gene yet. Did I answer all your questions... let me know, and thank you SO much for all your time and patience! Liberty > Hi Tim, > [quoted text clipped - 26 lines] > for all your time and patience! > Liberty Yes, I understand. I was going on your statement that you were 95% likely to have the gene. I wonder whether it is worth the $5000 to look for the 5% possibility that you might not, or whether it is better to just go with the assumption that it is there. It's all a very expensive business, and I can see that competes with children, who are also expensive. I do think you should discuss the whole issue with your oncologist at some point before going onto Tamoxifen, and work out a plan of action gives the best chance of the outcome you want. Tim I was told and read that most who are BRCA 1/2 positive are most often ER/PR neg and hormonal therapy is no use for breast cancer prevention. If you test positive for BRCA 1 you are at much higher rate for ovarian cancer, the removal of the ovaries is not to prevent breast cancer but to prevent ovarian cancer. Myriad the only lab in the USA http://www.myriad.com/index.htm charges around $3k for testing but may waive the fee. > > > Have you gotten testing for the BRCA1and BRCA2 genes? If the family > history [quoted text clipped - 51 lines] > > Tim Jackson > Hi, Im new here and desperate. I had a mastecomy in January, followed > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 4 lines] > can not find a plastic surgeon around here (Mass) who I am happy with > and I am feeling horribly fearful of this all. Thanks. You might try posting the question also on http://forum.bcans.net/. I have heard some horror stories about the tram flap. Jean214 on that site, in particular, ahs had a bad experience but others have also. I live in Mass, there are several fine surgical groups in the Boston Area. What is there objection, radiation ? Do you smoke? Have diabetes? Alex I live in Mass, there are several fine surgical groups in the Boston Area. What is there objection, radiation ? Do you smoke? Have diabetes? Alex > I live in Mass, there are several fine surgical groups in the Boston > Area. What is there objection, radiation ? Do you smoke? Have > diabetes? Alex Will the doctors in Boston do the surgery if they arent affiliated with Baystate Hospital... I mean as long as they take Mass Health (thats my biggest problem, not the greatest insurance). No, I dont smoke or anything of that sort, no other health problems. Other than the cancer I am very healthy (that I know of). Liberty > > Hi, Im new here and desperate. I had a mastecomy in January, followed > > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 8 lines] > heard some horror stories about the tram flap. Jean214 on that site, in > particular, ahs had a bad experience but others have also. Sandy, Thanks for the advice, thats why Im worried but I feel I have no other choice with the radiated side. *sigh*. > > > Hi, Im new here and desperate. I had a mastecomy in January, followed > > > by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 12 lines] > Thanks for the advice, thats why Im worried but I feel I have no other > choice with the radiated side. *sigh*. My wife opted for bilateral mastectomy with no reconsruction. She has been happy with her choice, but it's different for different people. > My wife opted for bilateral mastectomy with no reconsruction. She has been > happy with her choice, but it's different for different people. I would probably too, but Im so young that is more of an issue I think, than for most breast cancer patients. >>My wife opted for bilateral mastectomy with no reconsruction. She has been >>happy with her choice, but it's different for different people. > > I would probably too, but Im so young that is more of an issue I > think, than for most breast cancer patients. I can totally understand this: Though I'm very happy with my unreconstructred bilateral mastectomies, and think others should *consider* that option, it would definitely give me pause to make that decision at your age. (I'm 45 & a widow.) It must be *very* difficult for you to be going through this, at your age, with little/no close female/family support, and iffy insurance! Others of us are similarly alone (e.g., me), but with more miles on the odometer we're probably a little more experience at solo navigation through crises. This is a good group, and we'll try to help where we can . . . though I'm afraid we've been a little over-weighted to the "scary stuff" side so far in responding to you. Hang in there, dear, you *will* get through this & come out the other side. Best to you, Ann T. Remove 'dontsendspam' from address to reply by email First off dear, let me say how sorry I am that you're having to deal with this at all, let alone at the age of 23. And I'm so sorry for the loss of yuor mother, and other relatives. This is hard enough to go through with family around, but alone has got to be especially rough. I'm going to say here, that you're not alone anymore. This is a fantastic group, and you'll get tons of help, all you have to do is ask. Now...I'm one of those in the 50-60's group ;-) I'm 54 and I've had bc twice in the last 5+ years. I just finished chemo for the second time last June 6th {4 rounds of AC and followed by 4 rounds of Taxotere}. First time I was dx with bc I had a lumpectomy and radiation {33 treatments} and chemo {6 months/cmf} I was dx again in Nov. 2002. The fact it was a recurrence I had to have a mastectomy this time. I had imediate recon. I had what they call a "latisimuss dorsi flap" {spelling might be off abit, I'm old lol!} They used my back muscle and a saline implant {I've got the type that doesn't have to be exchanged/unless you want to} The fact I'd had radiation to this side the first time put the skin at a disadvantage. I'm sure you were told that the skin looses it's elasticity once radiated. This proceedure tunnels the skin through the body to the area where the mastectomy was performed. This is the reason for the proceedure I had. It provides extra skin, and your body {well mine, anyway} support the implant I know this must sound disgusting reading this, but it works. There are many that have had this done also and are very pleased with the results. This is why I'm responding to the last post back to "sandy" where you post that you don't have any other choice but the "tram" due to "radiation". Based on what I've just postd to you this is not necessarily true dear. Obviously, you already know that "everybody' different" {you're gonna grow to hate that phrase, believe me} it depends on the condition of _your_ skin, but it is something you could inquire about. I was told that the "tram" has a very long recovery time. This didn't have anything to do with my age, it is a hard surgery to go through, or so I was told by my PS and his surgical nurse/assistant. I was told the recovery time could be between 6-8 months, maybe longer. I really didn't want to be laid up that long. I did very well with the proceedure I had and continue to do well. The scar is barely seen now. It's been almost 2 years {11/02} I do have some stiffness in the shoulder, but nothing that's a constant problem to me. There is a website where you can post and ask questions about this proeedure and anything else you'd like to as about. If you're interested, you can email me and I'll email you the url for the site. There are quite a few forums on this site for specific areas concerning bc and recovery. I've posted there for a little over 2 years. Also, I don't know why you were told they would/could break during chemo {previous poster in this thread}. I had my last fill 3 days prior to chemo starting...and have done just fine. I was also told that the recon I was having after my surgery, would not create a recur, obscure one, and wouldn't hamper any type of treatment that would be needed if another recur did present itself. You take care there dear/God bless annie p/s feel free to email me if you need to ask anything or need info. Ultimately.....we know deeply that the other side of every fear is a freedom. "Courage"...is *fear* that has said it's prayers. morning_dove1@webtv.net (?*?Annie?*?) wrote in message news:<28646-40FDEEF4-622@storefull-3252.bay.webtv.net>... > First off dear, let me say how sorry I am that you're having to deal > with this at all, let alone at the age of 23. And I'm so sorry for the [quoted text clipped - 57 lines] > > "Courage"...is *fear* that has said it's prayers. Wow, youre great and you have NO idea how much I appreciate all this help! The surgery you explained is what they said I will need.. But since Im having my other side removed, they said I could just get an implant. I wanted implants in both but as you know, I could not get one due to radiation. Im afraid the results will be terrible with two different surgeries!! Could I maybe get the lat-dorsi flap on both sides to make it even..? But then I would have very weak muscles in my back if they did it on both sides. I know this is a strange question, but do you have a picture of the results you could share or know of any? The ones I have seen have been more scary than reassuring which is another reason Im scared of this all. I am not generally an aesthetic person but it is my breasts and I am only 23 so.. well Im sure you understand. Thanks so much, once again. Liberty And I would love the url for the other board if you could, please. > I know this is a strange question, but do you > have a picture of the results you could share or know of any? The ones > I have seen have been more scary than reassuring which is another > reason Im scared of this all. Check out http://www.susanlovemd.org/showme_frames.html . Click on one of the names, then scroll to the bottom of the resulting page. There are implants, non-reconstructed, and trams, but I didn't notice any lat flap examples on the list. Maybe there are some in the book, which you can also get info about on that page. Ann T. Remove 'dontsendspam' from address to reply by email >Hi, Im new here and desperate. I had a mastecomy in January, followed >by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 4 lines] >can not find a plastic surgeon around here (Mass) who I am happy with >and I am feeling horribly fearful of this all. Thanks. Are you really done with chemo and radiation? Do you have any metastases? Remember, reconstruction is surgery. The docs won't do it unless you're off chemo and radiation for a few weeks. Expanders are temporary. If you have to go back on chemo and still have the expander it may very well break. No harm to you but (a) it will no longer be expanding your skin and (b) it will have to be removed. Normally the expander is taken out when the reconstruction is done = 1 surgery. If it breaks you may have to have two surgeries. Hope this helps. Best wishes. - Tony Love & Light Tony Lima > >Hi, Im new here and desperate. I had a mastecomy in January, followed > >by chemo, and am currently in radiation. In December I am having a [quoted text clipped - 18 lines] > > Hope this helps. Best wishes. - Tony Tony... Thanks. Yes Im done with chemo, completely, and I will be done with radiation in the end of August. So by December I should be set for surgery. I am having the second mastectomy as prevention, not because there is any cancer there. I alreayd had a mastectomy where the tumor was, and all the chemo and radiation are prophylactic as well. Im just worried about the surgery, mostly for the aesthetic outcome.. having two different types.. one plain implant and one tram flap.. plus I cant find any plastic surgeons around here who I am comfortable with. Thank you again, Liberty Liberty, I had a bilateral without reconstruction although I had wanted to have it done immediately--long story but won't get into that here. My concern with your choice--is that you will not have the same on each side. Some have reported that they do not like being 'different' on each side. I don't know enough about it and don't even know if that would be a problem for you, especially since I believe that you are numb in that area. There are other types of reconstruction--i.e. DIEP flap is one. You might want to do a websearch as well. Do a google search with words: "breast cancer support" About the 7th or 8th listed is another support group which is divided into differrent areas related to breast cancer--with one being surgery/reconstruction. Take care and wishing you the best! {{{Hug}}} I just posted and told her I would send her the "url" for the other group if she wanted it. You and I post pretty regularily to that group as well. Take care there dear/God bless annie {"annieoh" in the other group} Ultimately.....we know deeply that the other side of every fear is a freedom. "Courage"...is *fear* that has said it's prayers. Is the Url a secret? \ Alex > I just posted and told her I would send her the "url" for the other > group if she wanted it. You and I post pretty regularily to that group [quoted text clipped - 6 lines] > > "Courage"...is *fear* that has said it's prayers. > Liberty, I had a bilateral without reconstruction although I had wanted to have > it done immediately--long story but won't get into that here. My concern with [quoted text clipped - 8 lines] > surgery/reconstruction. > Take care and wishing you the best! {{{Hug}}} Hey there, Thanks so much. Ok, Im a little confused.. I dont mind each breast being constructed differently as long as they look the same... is that what you meant? But yes, if two different reconstructions means they are goign to look even MORE different in the end, then yes that worries me. As mentioned, I have the lowest health insurance and very few plastic surgeons accept it, so Im very terrified about this whole process. Im still looking but I was told there are less than 10 p.surgeons in the whole STATE who accept my insurance, *cries*. I will check out that site you suggested.. thank you SO much, I hope this helps!! Liberty I know for fact that the partners group in Boston accepts mass health. You have to jump through hoops to get it approved . Also no hospital in mass does the diep flap and with mass health it is impossible to get an out of state provider. > > Liberty, I had a bilateral without reconstruction although I had wanted to have > > it done immediately--long story but won't get into that here. My concern with [quoted text clipped - 22 lines] > helps!! > Liberty |
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