Medical Forum / Diseases and Disorders / Breast Cancer / March 2008
The Reconstruction Dilemma
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sarahz@rocketmail.com - 16 Jan 2008 03:17 GMT I was first diagnosed with breast cancer in December 1986, 20 years ago! Had a wide-excision lumpectomy and radiation therapy. Was NED for a long time......
Now, I have it again. Since it is on the same side, and I have had my life limit of radiation there, I will have a masectomy soon. Sometime in the next week or so, I need to make the reconstruction-or- not decision. I have done some reading, talked to a couple of surgeons, and looked at lots of pictures. What I would really like is to hear some personal stories...... what did you decide? What was the deciding factor? Are you still happy with the decision? If you had reconstruction, what method did you choose? What else do I really need to know?
thanks for your help!
Eva - 16 Jan 2008 04:37 GMT > I was first diagnosed with breast cancer in December 1986, 20 years > ago! Had a wide-excision lumpectomy and radiation therapy. Was NED for [quoted text clipped - 11 lines] > > thanks for your help! ---------------- I have an implant and I'm glad I did it, but it wasn't a walk in the park. I'm still having nips and tucks and fat transfers done to try and make it more symmetrical. There are many choices; you can find a lot of information and photos at www.breastcancer.org .
Eva
Mary Fisher - 16 Jan 2008 11:44 GMT >I was first diagnosed with breast cancer in December 1986, 20 years > ago! Had a wide-excision lumpectomy and radiation therapy. Was NED for > a long time...... > > Now, I have it again. Since it is on the same side, and I have had my > life limit of radiation there, I didn't know there was a life limit - can you tell us more?
> I will have a masectomy soon. > Sometime in the next week or so, I need to make the reconstruction-or- [quoted text clipped - 6 lines] > > thanks for your help! I can't help, I just had a lumpectomy which left a hole but it's not important - to me.
Mary
sarahz@rocketmail.com - 17 Jan 2008 03:26 GMT > <sar...@rocketmail.com> wrote in message > > > Now, I have it again. Since it is on the same side, and I have had my > > life limit of radiation there, > > I didn't know there was a life limit - can you tell us more? I'm not sure I have enough facts to explain really well. I was told that radiation causes some permenant changes in the structure of tissue. At some point, there is a high risk of damage, both to underlying tissue and to the skin. So, the "normal" dosage is the maximum that they think most people's tissue will tolerate without significant damage. More radiation to the same location, even 20 years later, is not considered good medical practice, as I understand it.
I didn't push the question too hard because I also understand that a lumpectomy to this breast would not give a particularly satisfying cosmetic result: it is already about half the size of the other one. My previous surgeries took more tissue than the average lumpectomy.
Thanks to everyone who offered thoughts. I really appreciate seeing this through others' eyes!
Mary Fisher - 17 Jan 2008 10:35 GMT On Jan 16, 5:44 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> <sar...@rocketmail.com> wrote in message > > > Now, I have it again. Since it is on the same side, and I have had my > > life limit of radiation there, > > I didn't know there was a life limit - can you tell us more? I'm not sure I have enough facts to explain really well. I was told that radiation causes some permenant changes in the structure of tissue. At some point, there is a high risk of damage, both to underlying tissue and to the skin. So, the "normal" dosage is the maximum that they think most people's tissue will tolerate without significant damage. More radiation to the same location, even 20 years later, is not considered good medical practice, as I understand it.
Thanks for that, perhaps Tim know more (hint!)
I wish you well and hope that you're happy with whatever course you choose.
Mary
Tim Jackson - 18 Jan 2008 18:29 GMT > On Jan 16, 5:44 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: >> <sar...@rocketmail.com> wrote in message [quoted text clipped - 12 lines] > > Thanks for that, perhaps Tim know more (hint!) I don't have a lot to add. Yes there is a lifetime limit due to permanent damage the radiation does, a bit like scarring. What the limit is depends on the tissue involved, or in the line of fire.
We did have a discussion on the subject of radiotherapy for mets a while back. I had been told that a particular spot could only be irradiated once, Madiba argued that it was 'normal' to give a minimal dose that was sufficient to produce symptom reduction, and this could be many times less than the lifetime limit, so could be repeated many times. The upshot was that it does vary, and in the UK it was more common to give a maximal dose. We were dealing with the Christie hospital, which also happened to be where Madiba had trained.
However what we are talking about here is adjuvant radiation to the chest after surgery, not radiotherapy for mets., so the dosage to the heart and lungs has to be taken into account. I don't know how close the normal dose comes to maximal, but I wouldn't be surprised if it was close.
It is pretty normal to go for mastectomy on a second occurrence anyway, radiation limit may be one reason, but another is that the statistical risk of further occurrences is relatively high, so removing as much tissue as possible makes a lot of sense.
Tim
Mary Fisher - 19 Jan 2008 09:48 GMT >> On Jan 16, 5:44 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: >>> <sar...@rocketmail.com> wrote in message [quoted text clipped - 35 lines] > risk of further occurrences is relatively high, so removing as much tissue > as possible makes a lot of sense. Exellent reply, thanks for increasing my (at least) understanding.
Have you any idea why the tendency in UK is different from other places?
Mary
> Tim Tim Jackson - 19 Jan 2008 10:21 GMT >> We did have a discussion on the subject of radiotherapy for mets a while >> back. I had been told that a particular spot could only be irradiated [quoted text clipped - 7 lines] > > Have you any idea why the tendency in UK is different from other places? One suspects it might be cost pressures. Our NHS being basically a command economy rather than a free market, the availability of the equipment does not necessarily grow to meet demand, and this has especially been the case in radiotherapy for a long time. So there may well be more emphasis than in the US on minimising the number of treatments per patient rather than on minimising the dose per patient per treatment.
I doubt that this factor affects adjuvant treatment, this is about the policy for treating mets., in which the benefits of different doses are much more arguable.
Tim
Mary Fisher - 19 Jan 2008 14:02 GMT >>> We did have a discussion on the subject of radiotherapy for mets a while >>> back. I had been told that a particular spot could only be irradiated [quoted text clipped - 15 lines] > treatments per patient rather than on minimising the dose per patient per > treatment. I did wonder about that.
The other hand point is that more treatments would result in more payments to the operator ...
> I doubt that this factor affects adjuvant treatment, this is about the > policy for treating mets., in which the benefits of different doses are > much more arguable. Thanks for all that, Tim.
Mary
> Tim J - 05 Feb 2008 11:23 GMT > > On Jan 16, 5:44 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: > >> <sar...@rocketmail.com> wrote in message [quoted text clipped - 25 lines] > maximal dose. We were dealing with the Christie hospital, which also > happened to be where Madiba had trained. Tim, It's Steph who trained at the Christie and with whom you had the exchange < http://groups.google.com/group/alt.support.cancer.breast/browse_thread/thread/de b911ee136110a5?tvc=2
thread name " Secondary bone tumours - what will happen" madiba was not in the thread. I forget where he trained. I thought Austria, but he's not around to ask these days.
I'm not sure Steph agreed with you about about RT at the Christie and/or UK. ( I have to reread it again) I've been trying very hard to remember complaints about RT from UK'ers and can only remember yours.
J
> However what we are talking about here is adjuvant radiation to the > chest after surgery, not radiotherapy for mets., so the dosage to the [quoted text clipped - 8 lines] > > Tim Tim Jackson - 05 Feb 2008 12:21 GMT > Tim, > It's Steph who trained at the Christie and with whom you had the exchange [quoted text clipped - 11 lines] > > J Well spotted. I'm confusing two different discussions, but the facts remain, only the names have been changed.
I don't think anyone was complaining, I wasn't. It's just a different approach. The point was to explain why some patients (esp. in UK) are told they can only get radiation to any given spot once, and others get it several times.
I think that it just depends what dose was given in the first place, and how much damage is acceptable to achieve remission of symptoms.
Tim
pumpkin - 08 Feb 2008 06:55 GMT by the way, I'm so sorry you got cancer a second time :( Must have been very sad, after 20 years.
On Jan 16, 5:44 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote:
> <sar...@rocketmail.com> wrote in message > > > Now, I have it again. Since it is on the same side, and I have had my > > life limit of radiation there, > > I didn't know there was a life limit - can you tell us more? I'm not sure I have enough facts to explain really well. I was told that radiation causes some permenant changes in the structure of tissue. At some point, there is a high risk of damage, both to underlying tissue and to the skin. So, the "normal" dosage is the maximum that they think most people's tissue will tolerate without significant damage. More radiation to the same location, even 20 years later, is not considered good medical practice, as I understand it.
I didn't push the question too hard because I also understand that a lumpectomy to this breast would not give a particularly satisfying cosmetic result: it is already about half the size of the other one. My previous surgeries took more tissue than the average lumpectomy.
Thanks to everyone who offered thoughts. I really appreciate seeing this through others' eyes!
sarahz@rocketmail.com - 12 Feb 2008 02:26 GMT > by the way, I'm so sorry you got cancer a second time :( Must have been very > sad, after 20 years. Thanks. I admit I had begun to think I was immune to another occurence. And I was/am both sad and angry to have to deal with it again. But, it is what it is and its not like I get a choice. I have told the doctors that I want 40 years this time...... as usual, they are not promising anything.:-)
Eva - 12 Feb 2008 04:10 GMT On Feb 8, 12:55 am, "pumpkin" <billowr...@att.net> wrote:
> by the way, I'm so sorry you got cancer a second time :( Must have been > very > sad, after 20 years. Thanks. I admit I had begun to think I was immune to another occurence. And I was/am both sad and angry to have to deal with it again. But, it is what it is and its not like I get a choice. I have told the doctors that I want 40 years this time...... as usual, they are not promising anything.:-) --------------- All the best to you, Sarah. Sorry I don't have anything else to offer.
Eva
sarahz@rocketmail.com - 01 Mar 2008 04:09 GMT Surgery was on Feb 13. Now that I am starting to recuperate, I wanted to stop by with an update.
The best news first: they got good margins on the tumor, with no evidence of lymph node involvement. It was a bit on the large side (1.8 cm), but they are still calling it stage 1.
I had reconstruction with a free abdominal flap. They were able to do the DIEP procedure, leaving muscle somewhat traumatized but intact. The transplanted tissue is doing great. The original skin around it is struggling; this was where I had radiation last time. The docs had warned me that skin might be fragile. It'll be ok in the long run, but it is going to slow down my recovery some. Still, I am feeling better every day.
Thanks to all of you for your thoughts and support!
[fyi, here is the best description of this reconstruction procedure that I found. It is pretty explicit, so you probably do not want to open it, for example, at work: <http://www.diepflap.com/ article-0065.html> ]
Mary Fisher - 01 Mar 2008 09:00 GMT > Surgery was on Feb 13. Now that I am starting to recuperate, I wanted > to stop by with an update. [quoted text clipped - 19 lines] > open it, for example, at work: <http://www.diepflap.com/ > article-0065.html> ] What a fascinating site, thank you.
And thanks too for reporting, I hoipe everything contues well.
Mary
didlems - 16 Jan 2008 16:30 GMT Hello, I was without a right breast for 4 years after having a mastectomy in Nov 2002.I made the most of life for this period as the thought of reconstruction surgery frightened me ! Then a super female surgeon did reconstruction for a friend and I thought 'I want some of that', in fact it was more like ' I want to look like that.I decided on a free tram, as my friend had had and couldn't be more pleased.However, it was a tough journey .I got myself super fit, lost some pounds, made sure my lung capacity was good for the surgery (mine was 12 hours long) Even then the first few days were very hard and I did wonder what I had taken on. But it was, without doubt, the best decision I could have ever made. Who would believe that curves and shape, ins and outs have so much baring on one's pshycological well being.I'm happy to share more, do e-mail very best wishes Kathleen
>I was first diagnosed with breast cancer in December 1986, 20 years > ago! Had a wide-excision lumpectomy and radiation therapy. Was NED for [quoted text clipped - 11 lines] > > thanks for your help! Sandy L - 17 Jan 2008 02:52 GMT >I was first diagnosed with breast cancer in December 1986, 20 years > ago! Had a wide-excision lumpectomy and radiation therapy. Was NED for [quoted text clipped - 11 lines] > > thanks for your help! Mywife opted for bilaterl mastectomy with no reconstruction, no prostheses. Shehasbeenhappy with her decision. Shewas57atthe time, a litle over 10years ago. She has a little trouble finding clothes that fdrape well, but since shopping is her favorite sport, it hasn't been a problem.
x{yz}enophil44@hotmail.com - 17 Jan 2008 15:52 GMT >Mywife opted for bilaterl mastectomy with no reconstruction, no prostheses. >Shehasbeenhappy with her decision. Shewas57atthe time, a litle over 10years >ago. She has a little trouble finding clothes that fdrape well, but since >shopping is her favorite sport, it hasn't been a problem. I wish someone had offered me that option. I had a mastectomy and now have a prosthesis, but it's all less than satisfactory and I would much rather have no boobs at all to worry about.
I can't have a reconstruction or a second elective mastectomy because I have a heart problem which has recently worsened, so it looks as though I'm stuck lopsided, damnit!
 Signature "It's easier to get forgiveness than permission." Rear Admiral "Amazing" Grace Hopper
Mary Fisher - 18 Jan 2008 11:48 GMT >>Mywife opted for bilaterl mastectomy with no reconstruction, no >>prostheses. [quoted text clipped - 6 lines] > have a prosthesis, but it's all less than satisfactory and I would much > rather have no boobs at all to worry about. You mean you weren't?
My surgeon said he'd do whatever I wanted but that he wanted me not to make a snap decision. I did change my mind but said that if I had to go back at any time I'd have an all-off.
> I can't have a reconstruction or a second elective mastectomy because I > have a heart problem which has recently worsened, so it looks as though > I'm stuck lopsided, damnit! That's the worst option, I think.
Mary
SK - 18 Jan 2008 17:02 GMT I had my mastectomy at age 72. My daughters urged me to have reconstruction, but since I was happily single and intending to remain that way, and wasn't planning on entering any beauty contests, I opted for a prothesis. That was over 7 years ago and I've never once regretted my decision.
I find the prothesis to be perfectly comfortable and wear it every day - just sling it on and forget about it. I don't know about other countries, but in the U.S., Medicare pays for both mastectomy bras and the silicon prothesis. I think they allow one prothesis a year, but actually I wore mine from 2001 until recently when it finally sprung a leak and I had to get a new one. It's lighter than the first, so even more comfortable.
S.K.
Barb - 20 Jan 2008 02:13 GMT Deciding upon reconstruction or not is such a deeply personal choice. I hope that hearing from those of us who did reconstruction and those who didn't actually helps you to come to your own conclusion.....
I had my mastectomy 24 years ago in November and did a year of chemo before opting for reconstruction using a tissue expander (filled with saline). The expander that was used had a removable port and it sealed, with the removal of the port, to become my permanent implant. I am satisfied with my choice to have the reconstruction---the resultant "breast mound" mostly fills a bra cup, but is not a perfect match to my natural breast. I also had a skin graft to make a nipple. I suspect that I will eventually have to have a "replacement"---I think I recall the surgeon telling me that they last about 15 years, so I've been fortunate that mine has lasted as long as it has.
My surgeon was very explicit about what he could do with reconstruction (and what he couldn't), so having a reasonable expectation is pretty important, I think.
I wish you total good health, and then comfort with the decision you make regarding reconstruction.
Barb
sarahz@rocketmail.com - 20 Jan 2008 22:15 GMT > Deciding upon reconstruction or not is such a deeply personal choice. I > hope that hearing from those of us who did reconstruction and those who > didn't actually helps you to come to your own conclusion..... It absolutely does help to hear these stories! I know that I must make my own decision ultimately. But I think my worst feat is that I will leave out some important aspect or question in making that decision. By hearing how others decided and how it turned out, it helps fill in the blanks.
I am scheduled for surgery on Feb. 13, and have another week or so before I need to give the docs a final decision. It may be a couple of weeks after surgery before I get back to a computer, but I will be sure to say hi when it is all over.
And, as an aside...... I have not been an active participant in this group, but I sometimes read it and, from time to time as is seemed appropriate, have corresponded directly with various members when I thought I had some insights to offer. I really appreciate how willing you have all been to help me out despite that I probably seemed to drop in out of nowhere!
pumpkin - 08 Feb 2008 06:51 GMT I had reconstruction. I chose a highly recommended surgeon and got the implant at the same time as the mastectomy. my surgeon didn't listen to me....two months after the procedure, I had that implant removed and a different one--the one I'd requested at our first consult--installed. it's better but it's certainly not perfect. during that surgery (the supposedly "minor" one to replace the implant) I had hematoma, discovered a few hours later (my entire side ballooned up) so I was wheeled back in for emergency surgery and had to stay overnight. That turned out OK.....the breast is the right size and good placement, scar not bad at all...it has a dent in it but I've become accustomed to that. It's way too tight though, I do push-ups and lift weight and it is like a softball on there but when I wear clothes no one knows (and I wear thin tight clothes; just this week someone said I had the body of a hot 17 year old, and I am 3x that age)....anyway....then I had the nipple done, and again my perfect surgeon failed, LOL...it's in exactly the right place but collapsed within weeks, no elevation at all. So on Monday I am going back for (ta-da) another try....and this time I get an organ donation, the cadaver tissue, so we'll see. More expense, more missed work and lost income, more....whatever.....what kind of cancer did you have? were you taking tamoxifen or Femara? was the tumor near the original site? I had four biopsies on this one "bad" boob so it was never going to look great no matter what....would I do reconstruction again? yes....it is what it is. better than using prosthesis, just my opinion; but ask me in 10 years and I might respond differently, these inserts ain't forever.....I don't like the feel of it but I'm grateful the option existed. I turned down the first surgeon recommended.....I interviewed and researched. I've been unlucky I guess but also luckier than many. After this "try" I guess I'm done...I won't touch the "good" boob (I shudder at women who have double mastectomies prophylactically unless they have really really bad prognosis, it is NOT FUN, and I like my NIPPLES, dammit, I really miss my nipple)....and I'll probably do the tattooing as well. It has all been a long process but I can't imagine having simply a flat scar on that side. I think it's a difficult decision. My surgeons made it seem fairly simply and said that 75% of their mam patients had reconstruction, so...I just nodded and did my research and went forward. I had to make the decision quickly (cancer was Stage 1 but things were kind of rushed through). I think it has a lot to do with your lifestyle, your body image, your personality and mental attitude, your sexual/romantic feelings/situation. I've had to make a lot of medical/health decisions in my life and.....you just do what makes sense at the time and then hope for the best. that's all you can do. oh, and ask lots of people who have "been there." Good luck...my surgery is NOT on Valentine's Day ;-) On Jan 19, 8:13 pm, "Barb" <ammer...@epix.net> wrote:
> Deciding upon reconstruction or not is such a deeply personal choice. I > hope that hearing from those of us who did reconstruction and those who > didn't actually helps you to come to your own conclusion..... It absolutely does help to hear these stories! I know that I must make my own decision ultimately. But I think my worst feat is that I will leave out some important aspect or question in making that decision. By hearing how others decided and how it turned out, it helps fill in the blanks.
I am scheduled for surgery on Feb. 13, and have another week or so before I need to give the docs a final decision. It may be a couple of weeks after surgery before I get back to a computer, but I will be sure to say hi when it is all over.
And, as an aside...... I have not been an active participant in this group, but I sometimes read it and, from time to time as is seemed appropriate, have corresponded directly with various members when I thought I had some insights to offer. I really appreciate how willing you have all been to help me out despite that I probably seemed to drop in out of nowhere!
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