New: Educated, but lost in reconstruction options (for 50+ year-old survivors)
I am a confused newbie who has recently been diagnosed with Invasive Ductal Carcinoma - Clinical Stage 1; ER/PR Positive - in both breasts. When I was first diagnosed (original diagnosis was only cancer in one breast), there was talk about shrinking the tumor using hormone therapy meds prior to surgery. During the testing process, I went for a second opinion at a more well-known facility in our state. After discussion, my husband and I decided that I would go with this facility and the doctors at it. Meanwhile more test results came back and we learned of the cancer in the other breast.
At this point, the recommendation seemed to go from a lumpectomy to a bilateral mastectomy - not something I was prepared for and not something I've yet accepted. When I asked about the testing of the other "mass" (there's a 2nd in one breast not yet tested), I was informed that I'd need to be willing to miss more work and that essentially I'd need to be more . . . I think the terminology used was "committed." Basically it seemed that based on latest results, the surgeon felt as if it was a forgone conclusion that the other mass would also be cancer. Since this other spot is located far from the original spot diagnosed as cancer, it would (when clear margins are considered) take most of my breast should it be cancer. While the surgeon's recommendation floored me, I decided perhaps going to see a plastic surgeon and learning more about reconstruction would perhaps be beneficial - that maybe learning about this process would ease my fears, stress, and anxieties as far as a bilateral mastectomy was concerned.
The Plastic Surgeon was very nice, patient, and informative, but I definitely experienced overload - even though I'd done some prior research. After that meeting, I came away with - there is no optimal choice . . . no true win. So, stressed over deciding between a lumpectomy vs. mastectomy and implant vs. tissue (DIEP-flap) reconstruction (should I go the latter surgical route), I've asked to be matched to survivors diagnosed in their 50's. I also thought I might also try this site to obtain a greater pool of answers/experiences from 45 - 55 year-olds to the questions below:
- What influenced you the most in making a particular decision and would you make the same decision? Why/Why not? (Please no true horror stories of various complications.)
- What analogy can you provide about your pain level after lumpectomy/mastectomy? After reconstruction (please specify implant/DIEP-flap)? (When I had my first biopsy, I thought that was extremely painful, so I can't imagine these other surgeries.)
- How long was it before you could do light duty (such as computer work) after a mastectomy? After reconstruction?
- What analogy can you provide regarding the expander experience? (I understand many say they are hard, but having a hard time understanding the level of discomfort, how off my appearance will be in clothing, how they may affect my confidence in public settings as I would be mortified if others could tell, but want to know the truth.)
- How would you rate your satisfaction level with your reconstruction? What do you wish was different? (If you did not already specific type of reconstruction in question #2, please do.)
- If you went thru reconstruction, what analogy can you provide regarding the amount of feeling you have in your breasts, if any?
- Working women, how did you handle things at work? (I've not told anyone as I like a place where I sort of feel my life is normal; however, I'm obviously going to be out for surgery and maybe radiation/chemo, so . . . not really sure how to minimize what I tell - assuming I don't have chemo and my hair falling out doesn't tell for me.)
- Working women, how much short-term disability time did you take for the various surgeries? Did you exceed the 480 hours of FML (especially interested in this for those that opted for the DIEP-flap.)
- How did you overcome any potential doubts about your feminity? Sexuality?
Thanks in advance for taking time to read this long post and your responses!
Comments
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maximizing your feedback audience
I don't have personal experience as to your questions, I had lumpectomy. But if you're looking to maximize your responses, be sure and check out breastcancer.org. That site was also recommended by my onc. The discussion boards there are subdivided by topic, so you can post specifically on their reconstruction boards. When you find a board you like be sure and mark it as a favorite so it's easy to find again.
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Thanks!Puffin2014 said:maximizing your feedback audience
I don't have personal experience as to your questions, I had lumpectomy. But if you're looking to maximize your responses, be sure and check out breastcancer.org. That site was also recommended by my onc. The discussion boards there are subdivided by topic, so you can post specifically on their reconstruction boards. When you find a board you like be sure and mark it as a favorite so it's easy to find again.
Thanks for the info. I have a couple different sites up in my tabs. This one seemed set up nicely and seemed to have more current responses than some sites, so I started here. I will check out the other later tonight. I did get to speak with a survivor earlier today, so now I have a little more info.
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Thoughts on treatment
Although my IDC was only in one breast, I, too was first given the option of trying hormonal therapy first. Second breast surgeon was ready to do a lumpectomy right away. Upon consulting with each other in front of me, they decided to send me to the oncologist first. He brought up an excellent point - if I went on the hormonal therapy for 3 months and the tumor was not responding, it may have spread and caused more damage. ( Food for thought if you were still considering HT)
instead I was given chemo first to shrink the tumor away from the pectoral wall. The type of surgery depends on the location and aggression of your cancer.
Since I taught (school is just a large germ factory), I chose to take a leave of absence through my treatment. I thought I would only be in treatment (chemo, surgery, radiation) between July and December. Well, we are turning the calendar this week, and my surgery is still not scheduled. Just be aware that the timeline you set is not necessarily the timeline that will happen. I did not have any delays in chemo treatments, never landed in the hospital with complications, and yet still I am behind MY schedule.
your treatment will not follow the same path, but you will need to be realistic. Depending on the type of work that you do, be prepared to readjust. It is difficult now to set everything in place. You sound like an organizer, and I know how you feel. If it can be put on a calendar, it can happen. Well. . . . Not necessarily with cancer treatment. You may also get different answers from doctors - one surgeon told me radiation would start 4 weeks after surgery; plastic surgeon told me to count on 6-8 weeks post surgery.
wishing you the best, hopefully you are comfortable with the medical advice from the new facility. I sometimes think it was easier for the previous generation who never had choices in their treatment. When doctors ask me what I want to do, I feel so inadequate. I studied how to educate children, not make decisions on what style of plastic surgery I prefer. You can research so many areas on the wonderful sites, but just keep in mind they, like my own post, are someone else's story. Your story will develop on its own, but the ending will be a spectacular, " She lived happily ever after!"
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confused newbie
Hi, I can try to take a stab at some of your questions:
1) i decided to have bilateral since I was BRCA 1 and the likelihood of the cancer coming back in the good breast was high. Also had profilactive hysterectomy. I would have done the bilateral in any case as I wouldn't have wanted to go through the whole treatment plan again. Of course I would make the same decision. I did and do want the best chances for survival.
2) The bilateral was not too terribly painful. Meds helped. Level went from about 7 to 0 in a relatively short time. I had DIEP flap reconstruction with implants put in later. The pain from the DIEP was far worse than anything I could have imagined. I don't think I would do it again. It was my only option for reconstruction. Recovery time is lenghthy and extremely uncomfortable. Had several surgeries. They had to try to make the breasts even a couple of times. The radiated breast stayed higher while the other breast got larger with time. Apparently a woman in her 50's does not have the collagen or young skin to get the results a younger woman might achieve. I do enjoy having the breasts now but in hindsight would not have done it.
3) I was washing my windows 2 weeks after bilateral..w/o doctor approval of course. Was probably 5 weeks or more before I could do light duty after DIEP. I was not allowed to straighten my posture and had to remain stooped and use walker. The abdominal DIEP flap is a huge operation.
4) I did not have expanders.
5) Satisfaction with reconstruction is adequate. Considering the scars from the DIEP, the scar from the sentinel node biopsy, the huge scar across my abdomen where the fat and veins were removed.
6) There is basically no feeling in my breasts.
7) I worked through it all and did tell my boss about every procedure. Worked thru the chemo, took a couple of weeks for bilateral, took over a month for the DIEP, and various times for other surgeries.
8) I did not take short term disability. I worked from home with a computer the company set me up with.
9) I had wonderful partners...one at a time lol...we enjoyed ourselves without reservation. I found that most men are intelligent and caring enough not to mind the scars at all.
Best of luck to you in making these difficult decisions, Sharon
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Teach76 Too Many ChoicesTeach76 said:Thoughts on treatment
Although my IDC was only in one breast, I, too was first given the option of trying hormonal therapy first. Second breast surgeon was ready to do a lumpectomy right away. Upon consulting with each other in front of me, they decided to send me to the oncologist first. He brought up an excellent point - if I went on the hormonal therapy for 3 months and the tumor was not responding, it may have spread and caused more damage. ( Food for thought if you were still considering HT)
instead I was given chemo first to shrink the tumor away from the pectoral wall. The type of surgery depends on the location and aggression of your cancer.
Since I taught (school is just a large germ factory), I chose to take a leave of absence through my treatment. I thought I would only be in treatment (chemo, surgery, radiation) between July and December. Well, we are turning the calendar this week, and my surgery is still not scheduled. Just be aware that the timeline you set is not necessarily the timeline that will happen. I did not have any delays in chemo treatments, never landed in the hospital with complications, and yet still I am behind MY schedule.
your treatment will not follow the same path, but you will need to be realistic. Depending on the type of work that you do, be prepared to readjust. It is difficult now to set everything in place. You sound like an organizer, and I know how you feel. If it can be put on a calendar, it can happen. Well. . . . Not necessarily with cancer treatment. You may also get different answers from doctors - one surgeon told me radiation would start 4 weeks after surgery; plastic surgeon told me to count on 6-8 weeks post surgery.
wishing you the best, hopefully you are comfortable with the medical advice from the new facility. I sometimes think it was easier for the previous generation who never had choices in their treatment. When doctors ask me what I want to do, I feel so inadequate. I studied how to educate children, not make decisions on what style of plastic surgery I prefer. You can research so many areas on the wonderful sites, but just keep in mind they, like my own post, are someone else's story. Your story will develop on its own, but the ending will be a spectacular, " She lived happily ever after!"
Thanks so much for responding and providing your perspective. You are right that I'm an organizer - a planner . . . in part I believe this is part of my dilemma. When I identify a need or a problem, I like to develop a plan and then accomplish the set goal. This whole situation is definitely not part of the plan and all the choices - which are all imperfect - severely muddy the water in developing a plan.
Like you, I'm an educator. I learned how to educate students. I know how to conduct research and how to educate both children and adults on topics. However, while I've always believed and taught that knowledge is power, for the first time I'm not sure all my knowledge has given me power. At times it just seems to be too much - almost paralyzing.
I have spoken with two survivors - one who went the implant route and one who went with the DIEP-flap; neither had to actually make a decision about the other surgery. For example, the one who had the DIEP-flap surgery, had previously had a lumpectomy and radiation, so when her cancer came back the flap surgery was the only option available. While in one way it would be horrible to have limited options - at least she didn't have to debate. She also did not have to think about the effects of possible radiation on either type of surgery, which gives me a lot of pause when I really would just prefer to have immediate reconstruction when considering the mastectomy route.
You make a good point about the hormone therapy. I actually had that concern when it was originally being discussed, but with the diagnosis of the 2nd cancer and the push towards mastectomy, I lost sight of that. I guess my whole thought is that lumpectomy is less dramatic - still leaves me with feeling and there was once discussion of shrinking the tumor and that discussion has sort of died and I'm not clear why. Maybe I just lost that like I did your point about the hormone therapy. I will admit my brain does not seem to retain info as well these days - I constantly look back at my notes to remember things, but what I get to review is only as good as the notes I've tried to take while ingesting tons of info. I plan to ask the surgeon again.
I'm sorry to hear that you've had to wait so long to get to your surgery. I definitely do not want to get off my timeline as my youngest is getting married at the end of this next year. I'd very much like to have this all behind me by that time. I hope you will get to move forward with your surgery soon, so you too can move onward and also have your happy ending - "She lived happily ever after!" - That sounds sooooo good!
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PiNKiDC51 said:
Teach76 Too Many Choices
Thanks so much for responding and providing your perspective. You are right that I'm an organizer - a planner . . . in part I believe this is part of my dilemma. When I identify a need or a problem, I like to develop a plan and then accomplish the set goal. This whole situation is definitely not part of the plan and all the choices - which are all imperfect - severely muddy the water in developing a plan.
Like you, I'm an educator. I learned how to educate students. I know how to conduct research and how to educate both children and adults on topics. However, while I've always believed and taught that knowledge is power, for the first time I'm not sure all my knowledge has given me power. At times it just seems to be too much - almost paralyzing.
I have spoken with two survivors - one who went the implant route and one who went with the DIEP-flap; neither had to actually make a decision about the other surgery. For example, the one who had the DIEP-flap surgery, had previously had a lumpectomy and radiation, so when her cancer came back the flap surgery was the only option available. While in one way it would be horrible to have limited options - at least she didn't have to debate. She also did not have to think about the effects of possible radiation on either type of surgery, which gives me a lot of pause when I really would just prefer to have immediate reconstruction when considering the mastectomy route.
You make a good point about the hormone therapy. I actually had that concern when it was originally being discussed, but with the diagnosis of the 2nd cancer and the push towards mastectomy, I lost sight of that. I guess my whole thought is that lumpectomy is less dramatic - still leaves me with feeling and there was once discussion of shrinking the tumor and that discussion has sort of died and I'm not clear why. Maybe I just lost that like I did your point about the hormone therapy. I will admit my brain does not seem to retain info as well these days - I constantly look back at my notes to remember things, but what I get to review is only as good as the notes I've tried to take while ingesting tons of info. I plan to ask the surgeon again.
I'm sorry to hear that you've had to wait so long to get to your surgery. I definitely do not want to get off my timeline as my youngest is getting married at the end of this next year. I'd very much like to have this all behind me by that time. I hope you will get to move forward with your surgery soon, so you too can move onward and also have your happy ending - "She lived happily ever after!" - That sounds sooooo good!
Rather than try and take notes, ask your doctors if it's OK to record your visit (I used the Voice Memo on my ipod, others use their phone). All my docs were good with that. My first morning I met with surgeon, MO and RO, hour meeting with each. Ended up I didn't have radiation until 3 months after that initial meeting with RO, and it was very helpful to be able to relisten to the session when I actually started radiation. Just make sure your recorder has a good charge.
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NO expericnce (Lumpectomies
NO expericnce (Lumpectomies for me)
I am sure other will have some advice..I am sending hugs and pixie dust.
Denise
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Puffin2014 said:
Rather than try and take notes, ask your doctors if it's OK to record your visit (I used the Voice Memo on my ipod, others use their phone). All my docs were good with that. My first morning I met with surgeon, MO and RO, hour meeting with each. Ended up I didn't have radiation until 3 months after that initial meeting with RO, and it was very helpful to be able to relisten to the session when I actually started radiation. Just make sure your recorder has a good charge.
I did learn that my phone has a voice recorder from a girl friend so did end up recording my meeting with the PS. I wish I had known about if for my other meetings/discussions. At least I know at this point and prior I took my husband with me, so that's at least a pseudo backup I have when I find my notes are missing some data.
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A Few Other Questions - DIEP Flapcati0314 said:confused newbie
Hi, I can try to take a stab at some of your questions:
1) i decided to have bilateral since I was BRCA 1 and the likelihood of the cancer coming back in the good breast was high. Also had profilactive hysterectomy. I would have done the bilateral in any case as I wouldn't have wanted to go through the whole treatment plan again. Of course I would make the same decision. I did and do want the best chances for survival.
2) The bilateral was not too terribly painful. Meds helped. Level went from about 7 to 0 in a relatively short time. I had DIEP flap reconstruction with implants put in later. The pain from the DIEP was far worse than anything I could have imagined. I don't think I would do it again. It was my only option for reconstruction. Recovery time is lenghthy and extremely uncomfortable. Had several surgeries. They had to try to make the breasts even a couple of times. The radiated breast stayed higher while the other breast got larger with time. Apparently a woman in her 50's does not have the collagen or young skin to get the results a younger woman might achieve. I do enjoy having the breasts now but in hindsight would not have done it.
3) I was washing my windows 2 weeks after bilateral..w/o doctor approval of course. Was probably 5 weeks or more before I could do light duty after DIEP. I was not allowed to straighten my posture and had to remain stooped and use walker. The abdominal DIEP flap is a huge operation.
4) I did not have expanders.
5) Satisfaction with reconstruction is adequate. Considering the scars from the DIEP, the scar from the sentinel node biopsy, the huge scar across my abdomen where the fat and veins were removed.
6) There is basically no feeling in my breasts.
7) I worked through it all and did tell my boss about every procedure. Worked thru the chemo, took a couple of weeks for bilateral, took over a month for the DIEP, and various times for other surgeries.
8) I did not take short term disability. I worked from home with a computer the company set me up with.
9) I had wonderful partners...one at a time lol...we enjoyed ourselves without reservation. I found that most men are intelligent and caring enough not to mind the scars at all.
Best of luck to you in making these difficult decisions, Sharon
Sharon,
Thanks so very much for sharing! I really appreciated it. I wanted to wait a bit to respond to consider additional questions. With regaards to your DIEP Flap surgery:
1. I was wondering if you ever had a C-section with any of your children? One woman I spoke to had 3 C-Sections and compared the pain of the flap surgery to that of her C-Sections. I did not have a C-Section with either of my kids, but I know several women that had them and whiile they often complained of the pain, it did not keep most of them from having kids again. So, just wondering if you ever had a C-Section to know if you feel differently than the other survivor with a similar comparison or if you're like me and do not have that type of experience to use as a reference.
2. Why did you have to walk stooped over? Was this the recommendation of the doctor for any particular reason? I sort of see this maybe for the first week, but not for an extended period. Did you maybe have your hysterectomy at the same time as the DIEP-flap, at the time of the mastectomy, or later? I had a hysterectomy when I was in my 30's and I know that I was not allowed to do certain things for a period of time, but I don't recall having to walk stoop for that either - though I may've for the first couple of days or so.
3. Why exactly did you have implants inserted after the DIEP? I think I read a story of another survivor that also had that done, but from another survivor I've talked to my understanding is that DIEP flap surgery normally provides the normal breast look and implants are generally not needed. Did you have implants because of radiation?
4. It sort of sounds like you did not have the DIEP flap surgery at the same time as your mastectomy, is that correct? How long after your mastectomy surgery did you have reconstruction? And, if you waited to have reconstruction, did you opt out of the expanders or were they not part of the process when you had your surgeries? If you opted out, why?
5. It also sort of sounds like you may have had radiation after having the DIEP flap surgery, is that true? My PS has indicated one of the benefits of expanders is that if I have to have radiation, then the radiation will not be affecting either an implant or tissue and then those surgeries will be done after the radiation. So, if I'm interpreting your response correctly, I'm wondering why you were not given radiation prior to the reconstruction surgery? Also, if you had the reconstruction prior to radiation, wondering if you noticed a difference between the tissue prior to radiation and after? I was told radiation makes the tissue (and implants) hard.
6. With regards to lack of feeling in your breast, did the surgeon ever explain whether the viens the re-attached were "bush" shaped vs. "tree" shaped. If the former, did they use the muscle from your stomach to increase blood flow. It is my understanding the "tree" shaped veies allow better blood flow and in that case they don't have to use the muscle. Trying to figure out if the amount of sensation (or lack there of) has anything to do with the the shape of the viens and if the use of the muscle may increase the pain in the abdomen after surgery.
Again - thanks so much for replying and providing info about your experience. It's truly helpful to get perspectives from folks like yourself!
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Thanks!disneyfan2008 said:NO expericnce (Lumpectomies
NO expericnce (Lumpectomies for me)
I am sure other will have some advice..I am sending hugs and pixie dust.
Denise
Appreciate the support!
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Hello!PiNKiDC51 said:Thanks!
Appreciate the support!
I wasn't 50ish at time of surgery but sixty-two. I wanted to put your mind at ease about diep flap surgery. I had an early detected aggressive ductal (w/tentacles) cancer. My breast surgeon gave me three scenarios at our first meeting, and my choice was a bilateral and immediate diep flap. Mine would have gone over to the other breast, which was free of cancer. He thought I made a good choice since my health was otherwise good, and my body size was height/weight proportionate. I had my first plastic surgeon appt next. Everything was explained in detail. I'm also the person who has to be organized and know every aspect of a situation. I had one month between hearing the word cancer and my one day (10 1/2 hr) surgery. I never walked stooped over and circled the hallway on the third day w/the IV pole. I didn't take pain meds either. I don't like that stuff! It was tolerable. I was in the hospital six days. I would definitely choose it again. We are all different. There are steps to everything, but you must be compliant. I couldn't lift or clean for the normal 6 weeks. I drove as soon as the drain tubes were removed. Mine took two weeks. I walked daily after the first two weeks, slowly!! At six weeks, I was allowed to do my normal 4 mi walk each morning. Three months later the revision surgery was done. My bikini line scar was trimmed and nipples created. My DR said he always removes the natural nipples because there is a 1% chance of cancer in them. Mine were cancer free after removal, but that was an unknown at reconstruction. So, that revision was in at 11am and home by 7pm. No down time. Three months later I had the nipples tattooed at the plastic surgeon's office. I was unable to return to my gym for a total of seven months but continued to walk daily. Again, we are all VERY different and do not heal the same. Your experience may not be mine. I didn't have chemo/rads. I wish you well in the decision making process. I know you have much info coming at you right now. Continue to do the research, and I know you'll be fine. Hugs, Linda
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Yes - Lots of Infolintx said:Hello!
I wasn't 50ish at time of surgery but sixty-two. I wanted to put your mind at ease about diep flap surgery. I had an early detected aggressive ductal (w/tentacles) cancer. My breast surgeon gave me three scenarios at our first meeting, and my choice was a bilateral and immediate diep flap. Mine would have gone over to the other breast, which was free of cancer. He thought I made a good choice since my health was otherwise good, and my body size was height/weight proportionate. I had my first plastic surgeon appt next. Everything was explained in detail. I'm also the person who has to be organized and know every aspect of a situation. I had one month between hearing the word cancer and my one day (10 1/2 hr) surgery. I never walked stooped over and circled the hallway on the third day w/the IV pole. I didn't take pain meds either. I don't like that stuff! It was tolerable. I was in the hospital six days. I would definitely choose it again. We are all different. There are steps to everything, but you must be compliant. I couldn't lift or clean for the normal 6 weeks. I drove as soon as the drain tubes were removed. Mine took two weeks. I walked daily after the first two weeks, slowly!! At six weeks, I was allowed to do my normal 4 mi walk each morning. Three months later the revision surgery was done. My bikini line scar was trimmed and nipples created. My DR said he always removes the natural nipples because there is a 1% chance of cancer in them. Mine were cancer free after removal, but that was an unknown at reconstruction. So, that revision was in at 11am and home by 7pm. No down time. Three months later I had the nipples tattooed at the plastic surgeon's office. I was unable to return to my gym for a total of seven months but continued to walk daily. Again, we are all VERY different and do not heal the same. Your experience may not be mine. I didn't have chemo/rads. I wish you well in the decision making process. I know you have much info coming at you right now. Continue to do the research, and I know you'll be fine. Hugs, Linda
Linda -
Thanks for sharing!!! Your story gives me hope for the surgery I'm leaning towards. I really, really desire to have the immediate reconstructive surgery, but the fear of lymph node involvement really worries me. Today marks two months since I heard the results of my first biopsy. Then, after testing, in December I learned about the 2nd cancer in my other breast. I met the PS two days later and that's when overload occurred. I asked my breast surgeon if waiting to have the surgery after Christmas would put my health in jeopardy and was told this was probably growing for a while, so it would not be problematic. With this in mind, I opted to take time to prepare/enjoy Christmas and do research/talk with survivors.
Everything in me says immediate reconstruction is best for me, but right now I just don't feel like test results have been in my favor. This worry that I'd go through the immediate surgery to find out I need radiation is a HUGE fear (especially since it's been two months and I'm not exactly sure how long it will be before I can get the surgery scheduled once I make a decision). However, that you didn't have chemo/rads after your surgery with a more aggressive cancer . . . well, it gives me hope that maybe I'm making things worse than maybe they are.Were Chemo and Radiation recommended and you just turned them down or did your oncologist truly feel these were not needed?
Also, were you offerred delayed reconstruction where expanders would be used? I know expanders were not really used in the past, but I've not really looked at when the practice changed from immediate to delayed with expanders. Also, do you consider yourself to have a high pain threshold or not? I'm sort of a wuss . . . so, that's why even though there are many things about DIEP Flap surgery that I prefer over implants, I'm a bit hesitant. The only pain references I have is the birth of my 9 lbs son (that I told my OB was not coming naturally, but did) and my hysterectomy. While I have a memory of both of those being very painful . . . I don't have any kind of recall where I'd say nope I'd never go through that again. So, I'm sort of hoping if I opt for the DIEP Flap surgery, it would be the same at the end of this next year.
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DIEP flapPiNKiDC51 said:A Few Other Questions - DIEP Flap
Sharon,
Thanks so very much for sharing! I really appreciated it. I wanted to wait a bit to respond to consider additional questions. With regaards to your DIEP Flap surgery:
1. I was wondering if you ever had a C-section with any of your children? One woman I spoke to had 3 C-Sections and compared the pain of the flap surgery to that of her C-Sections. I did not have a C-Section with either of my kids, but I know several women that had them and whiile they often complained of the pain, it did not keep most of them from having kids again. So, just wondering if you ever had a C-Section to know if you feel differently than the other survivor with a similar comparison or if you're like me and do not have that type of experience to use as a reference.
2. Why did you have to walk stooped over? Was this the recommendation of the doctor for any particular reason? I sort of see this maybe for the first week, but not for an extended period. Did you maybe have your hysterectomy at the same time as the DIEP-flap, at the time of the mastectomy, or later? I had a hysterectomy when I was in my 30's and I know that I was not allowed to do certain things for a period of time, but I don't recall having to walk stoop for that either - though I may've for the first couple of days or so.
3. Why exactly did you have implants inserted after the DIEP? I think I read a story of another survivor that also had that done, but from another survivor I've talked to my understanding is that DIEP flap surgery normally provides the normal breast look and implants are generally not needed. Did you have implants because of radiation?
4. It sort of sounds like you did not have the DIEP flap surgery at the same time as your mastectomy, is that correct? How long after your mastectomy surgery did you have reconstruction? And, if you waited to have reconstruction, did you opt out of the expanders or were they not part of the process when you had your surgeries? If you opted out, why?
5. It also sort of sounds like you may have had radiation after having the DIEP flap surgery, is that true? My PS has indicated one of the benefits of expanders is that if I have to have radiation, then the radiation will not be affecting either an implant or tissue and then those surgeries will be done after the radiation. So, if I'm interpreting your response correctly, I'm wondering why you were not given radiation prior to the reconstruction surgery? Also, if you had the reconstruction prior to radiation, wondering if you noticed a difference between the tissue prior to radiation and after? I was told radiation makes the tissue (and implants) hard.
6. With regards to lack of feeling in your breast, did the surgeon ever explain whether the viens the re-attached were "bush" shaped vs. "tree" shaped. If the former, did they use the muscle from your stomach to increase blood flow. It is my understanding the "tree" shaped veies allow better blood flow and in that case they don't have to use the muscle. Trying to figure out if the amount of sensation (or lack there of) has anything to do with the the shape of the viens and if the use of the muscle may increase the pain in the abdomen after surgery.
Again - thanks so much for replying and providing info about your experience. It's truly helpful to get perspectives from folks like yourself!
Hi, Yes I did have 2 caesarians. They were painful but I think the DIEP flap was worse for me. I was advised not to straighten up for a period of time. I believe this was due to the healing process in my abdomen. All I know is I had to sleep on my back and not have the bed flat. I'm not sure how long it was before I could straighten up. Not too terribly long. My hysterectomy was some time after my reconstruction. The DIEP only gave me about a very small B cup. I didn't have much abdominal fat to remove. So the PS offered me the option of having implants at a later date, which I took. My DIEP was done after my radiation. I don't remember exactly how long after my treatments were over the reconstruction began. They told me I was not a candidate for reconstruction at the time of my bilateral and that DIEP was the only option for me. The veins implanted were for blood flow to keep the tissue transplanted alive. Perhaps not having real nipples is why I don't have any sensation. Sorry, I don't have any idea about the reattached veins shape.
I understand what you are facing. It's a long journey. I trusted my team with my life and perhaps didn't do the extensive research you are doing. Someday in the near future you will be done with it all and enjoying your life with all your heart and soul. You will be fine, whatever you decide!
Happy New Year's,
Sharon.
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PiNKiDC51 said:
Yes - Lots of Info
Linda -
Thanks for sharing!!! Your story gives me hope for the surgery I'm leaning towards. I really, really desire to have the immediate reconstructive surgery, but the fear of lymph node involvement really worries me. Today marks two months since I heard the results of my first biopsy. Then, after testing, in December I learned about the 2nd cancer in my other breast. I met the PS two days later and that's when overload occurred. I asked my breast surgeon if waiting to have the surgery after Christmas would put my health in jeopardy and was told this was probably growing for a while, so it would not be problematic. With this in mind, I opted to take time to prepare/enjoy Christmas and do research/talk with survivors.
Everything in me says immediate reconstruction is best for me, but right now I just don't feel like test results have been in my favor. This worry that I'd go through the immediate surgery to find out I need radiation is a HUGE fear (especially since it's been two months and I'm not exactly sure how long it will be before I can get the surgery scheduled once I make a decision). However, that you didn't have chemo/rads after your surgery with a more aggressive cancer . . . well, it gives me hope that maybe I'm making things worse than maybe they are.Were Chemo and Radiation recommended and you just turned them down or did your oncologist truly feel these were not needed?
Also, were you offerred delayed reconstruction where expanders would be used? I know expanders were not really used in the past, but I've not really looked at when the practice changed from immediate to delayed with expanders. Also, do you consider yourself to have a high pain threshold or not? I'm sort of a wuss . . . so, that's why even though there are many things about DIEP Flap surgery that I prefer over implants, I'm a bit hesitant. The only pain references I have is the birth of my 9 lbs son (that I told my OB was not coming naturally, but did) and my hysterectomy. While I have a memory of both of those being very painful . . . I don't have any kind of recall where I'd say nope I'd never go through that again. So, I'm sort of hoping if I opt for the DIEP Flap surgery, it would be the same at the end of this next year.
Chemo/rads were never recommended. I had the ONCO DX to determine any further treatment. There is a cut-off to help in the decision making process. My cancer remained in the duct w/no node involvement. Expanders were never mentioned. I was small busted (B) w/not much stomach tissue to use. I do have feeling in both breasts but not the nipples. I'd say I do have a high tolerance to pain. You'll have a morphine pump within reach to use as needed. You do have time to recover between each step. I was told to sleep on my back in a recliner in the beginning. Believe me, if you go this route, your PS will give you exact instructions. On another note, we have someone on here with implants, and she loves them! Clementine can give you the scoop. Look her up and send a personal msg. She may possibly see this in the meantime. Linda
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Expanders
Hi,
I had expanders so wanted to address your questions since I didn't see that anyone else with expanders did, although I don't quite fit into your specified demographic (I was 40 at the time of diagnosis).
1. I was diagnosed with stage 2 cancer in my left breast. I was going to have to have a mastectomy (not lumpectomy) since my cancer was in two sites within the same breast but opted for a bilateral mastectomy. I opted for this because of my very strong family history and my desire not to have to be tested every 6 months with both an MRI and a mammo. I also felt this would give me some peace of mind that the cancer won't return.
2. I found that the pain I experienced after the bilateral mastectomy was very tolerable. I stopped the pain meds about 4 days after the surgery. Two days after surgery I went for a two mile walk and felt pretty good.
3. I was able to do computer work immediately when I returned home.
4. For me, I did not find the expanders to be painful, but they were a presence. They didn't feel natural and so I was aware of them most of the time. My appearance was not really off with clothing. I don't think anyone noticed and I went through this in the summer when I wore tank tops and light dresses. Not wearing clothing, it would have been obvious that something was up. The surgery to swap the expanders with implants was very easy. I was in before breakfast and out before lunch. My husband and I went for a 4 mile walk, out to lunch, and couch shopping that same day. By the evening I was tired and had a headache, so I took a couple of Tylenol and went to bed early. The implants were much more comfortable than the expanders.
5. I am satisfied with my reconstruction (except for the nipple tattoos). Nobody can tell anything when I am clothed and I am pretty sure that even in a bathingsuit it just looks like I have breast implants (like so many people do for solely cosmetic reasons).
6. I don't have any feeling in my breasts where there are scars and since I am small breasted the scars take up most of the front of my breast. I have feeling on the sides, top, bottom and inbetween my breasts.
7. I told only a couple of people at work and, since I was having chemo, went out for about 6 months. The chemo took 4 months and the rest of the time was for the initial mastectomies and the swap surgery (and a trip to Italy!). I was told that I didn't have to take off from work but I was urged to do so and I was glad that I did.
9. My husband's only reservation was that he was afraid that he was hurting me post surgeries. When I told him that it was fine he was fine with it. The scars really don't bother him, as he puts it, "it makes me feel that my wife is healthy". It has been 5 years now and I can say that from his perspective our sex life is very satisfying. For me, there is a drop due to not having any sensation in my breasts but it is very dealable otherwise.
I'm sorry you are going through this and hope that you find the path that is the best for you soon. Take care.
Clementine.
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Hi ClementineClementine_P said:Expanders
Hi,
I had expanders so wanted to address your questions since I didn't see that anyone else with expanders did, although I don't quite fit into your specified demographic (I was 40 at the time of diagnosis).
1. I was diagnosed with stage 2 cancer in my left breast. I was going to have to have a mastectomy (not lumpectomy) since my cancer was in two sites within the same breast but opted for a bilateral mastectomy. I opted for this because of my very strong family history and my desire not to have to be tested every 6 months with both an MRI and a mammo. I also felt this would give me some peace of mind that the cancer won't return.
2. I found that the pain I experienced after the bilateral mastectomy was very tolerable. I stopped the pain meds about 4 days after the surgery. Two days after surgery I went for a two mile walk and felt pretty good.
3. I was able to do computer work immediately when I returned home.
4. For me, I did not find the expanders to be painful, but they were a presence. They didn't feel natural and so I was aware of them most of the time. My appearance was not really off with clothing. I don't think anyone noticed and I went through this in the summer when I wore tank tops and light dresses. Not wearing clothing, it would have been obvious that something was up. The surgery to swap the expanders with implants was very easy. I was in before breakfast and out before lunch. My husband and I went for a 4 mile walk, out to lunch, and couch shopping that same day. By the evening I was tired and had a headache, so I took a couple of Tylenol and went to bed early. The implants were much more comfortable than the expanders.
5. I am satisfied with my reconstruction (except for the nipple tattoos). Nobody can tell anything when I am clothed and I am pretty sure that even in a bathingsuit it just looks like I have breast implants (like so many people do for solely cosmetic reasons).
6. I don't have any feeling in my breasts where there are scars and since I am small breasted the scars take up most of the front of my breast. I have feeling on the sides, top, bottom and inbetween my breasts.
7. I told only a couple of people at work and, since I was having chemo, went out for about 6 months. The chemo took 4 months and the rest of the time was for the initial mastectomies and the swap surgery (and a trip to Italy!). I was told that I didn't have to take off from work but I was urged to do so and I was glad that I did.
9. My husband's only reservation was that he was afraid that he was hurting me post surgeries. When I told him that it was fine he was fine with it. The scars really don't bother him, as he puts it, "it makes me feel that my wife is healthy". It has been 5 years now and I can say that from his perspective our sex life is very satisfying. For me, there is a drop due to not having any sensation in my breasts but it is very dealable otherwise.
I'm sorry you are going through this and hope that you find the path that is the best for you soon. Take care.
Clementine.
You are so sweet to post so quickly! You left out the best part...no bra needed at the gym!!! You are much closer to the age she wanted. I could be your mom! Happy New Year to all! Linda
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Lindalintx said:Hi Clementine
You are so sweet to post so quickly! You left out the best part...no bra needed at the gym!!! You are much closer to the age she wanted. I could be your mom! Happy New Year to all! Linda
You are so right! No bra needed at the gym or otherwise! I just wear camisoles now - they are so much more comfortable! If you could be my mother then you would have been awfully young to be having babies! Happy New Year to you too and to everyone else on the boards here. May 2016 bring us all good health and lots of laughs!
Very best,
Clementine
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Expander Thanks and Tears TodayClementine_P said:Expanders
Hi,
I had expanders so wanted to address your questions since I didn't see that anyone else with expanders did, although I don't quite fit into your specified demographic (I was 40 at the time of diagnosis).
1. I was diagnosed with stage 2 cancer in my left breast. I was going to have to have a mastectomy (not lumpectomy) since my cancer was in two sites within the same breast but opted for a bilateral mastectomy. I opted for this because of my very strong family history and my desire not to have to be tested every 6 months with both an MRI and a mammo. I also felt this would give me some peace of mind that the cancer won't return.
2. I found that the pain I experienced after the bilateral mastectomy was very tolerable. I stopped the pain meds about 4 days after the surgery. Two days after surgery I went for a two mile walk and felt pretty good.
3. I was able to do computer work immediately when I returned home.
4. For me, I did not find the expanders to be painful, but they were a presence. They didn't feel natural and so I was aware of them most of the time. My appearance was not really off with clothing. I don't think anyone noticed and I went through this in the summer when I wore tank tops and light dresses. Not wearing clothing, it would have been obvious that something was up. The surgery to swap the expanders with implants was very easy. I was in before breakfast and out before lunch. My husband and I went for a 4 mile walk, out to lunch, and couch shopping that same day. By the evening I was tired and had a headache, so I took a couple of Tylenol and went to bed early. The implants were much more comfortable than the expanders.
5. I am satisfied with my reconstruction (except for the nipple tattoos). Nobody can tell anything when I am clothed and I am pretty sure that even in a bathingsuit it just looks like I have breast implants (like so many people do for solely cosmetic reasons).
6. I don't have any feeling in my breasts where there are scars and since I am small breasted the scars take up most of the front of my breast. I have feeling on the sides, top, bottom and inbetween my breasts.
7. I told only a couple of people at work and, since I was having chemo, went out for about 6 months. The chemo took 4 months and the rest of the time was for the initial mastectomies and the swap surgery (and a trip to Italy!). I was told that I didn't have to take off from work but I was urged to do so and I was glad that I did.
9. My husband's only reservation was that he was afraid that he was hurting me post surgeries. When I told him that it was fine he was fine with it. The scars really don't bother him, as he puts it, "it makes me feel that my wife is healthy". It has been 5 years now and I can say that from his perspective our sex life is very satisfying. For me, there is a drop due to not having any sensation in my breasts but it is very dealable otherwise.
I'm sorry you are going through this and hope that you find the path that is the best for you soon. Take care.
Clementine.
Clementine and Linda -
Thank you both for all the good info. I truly appreciate the info, but it may take me a day or two or more to process and potentially ask any follow-on questions. While I've done all sorts of research, talked to survivors, and reached out on this and one other site (though it's not truly my nature to do this type of thing) . . . I've deliberately not looked at any pictures until today. Today I met with the PS's nurse to see pictures that were not available the day I initially met with the PS (and as I had overload without them maybe that was a good thing). However, today I met and saw my first pictures of this whole process (again purposely did not look before as I was very afraid of what might be on various sites).
I have to admit that I'm mortified and have not been able to stop crying since. My husband keeps saying that I need to look at the end and not the beginning, but I can't get those pictures out of my mind. I don't feel strong enough to endure this . . . I know that the alternative is an absolutely miserable death and I don't want to die, but a small part of me just can't help thinking . . . death, if it could be quick, would just be so much easier. I'm sure this is shock and grief, but I don't want to see myself like that and I certainly never want my husband or children to see me like that. How, oh, how do I get beyond the pictures and the first step??? What a way to end a year and begin another . . . the hole just gets deeper.
Sorry for this depressing, whiny post, but I don't know anyone personally that actually went through this. I mean maybe I do and I don't realize, but I really don't believe I do. Long and short, I've nobody that's gone through this that can help me from that perspective. Thanks for listening.
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Hi Pinki. I'm so sorry. IPiNKiDC51 said:Expander Thanks and Tears Today
Clementine and Linda -
Thank you both for all the good info. I truly appreciate the info, but it may take me a day or two or more to process and potentially ask any follow-on questions. While I've done all sorts of research, talked to survivors, and reached out on this and one other site (though it's not truly my nature to do this type of thing) . . . I've deliberately not looked at any pictures until today. Today I met with the PS's nurse to see pictures that were not available the day I initially met with the PS (and as I had overload without them maybe that was a good thing). However, today I met and saw my first pictures of this whole process (again purposely did not look before as I was very afraid of what might be on various sites).
I have to admit that I'm mortified and have not been able to stop crying since. My husband keeps saying that I need to look at the end and not the beginning, but I can't get those pictures out of my mind. I don't feel strong enough to endure this . . . I know that the alternative is an absolutely miserable death and I don't want to die, but a small part of me just can't help thinking . . . death, if it could be quick, would just be so much easier. I'm sure this is shock and grief, but I don't want to see myself like that and I certainly never want my husband or children to see me like that. How, oh, how do I get beyond the pictures and the first step??? What a way to end a year and begin another . . . the hole just gets deeper.
Sorry for this depressing, whiny post, but I don't know anyone personally that actually went through this. I mean maybe I do and I don't realize, but I really don't believe I do. Long and short, I've nobody that's gone through this that can help me from that perspective. Thanks for listening.
Hi Pinki. I'm so sorry. I completely understand. I was just diagnosed with IDC a few weeks ago. I had the same plastic surgery consult you did and left a complete mess. Everything you are saying is so familiar to me.
for me, personally, I sat with the decision, looked at zillions of photos (have you seen the Scar Project? Amazing, google it). And I came to the conclusion that if I end up with mastectomy (still not clear), I will not have reconstruction. I will just be flat, and ask for the flattest, nicest scar they can make. And maybe someday get a beautiful tattoo (google mastectomy tattoos!). I can wear prosthesis when I want curves or symmetry in clothing. and I can always change my mind at a later date, if I want to.
i made this decision because I didn't want the additional risk of major surgery with flaps, I don't like the thought of expanders or the fact that they are not permanent and need to be replaced, and I'm very active, with two kids still home and a husband with a disability and I just want to be functional and actibe and keep playing tennis and kayaking and not have a prolonged recovery. And asthetically, I'm just not convinced I will be happy with reconstruction anyway.
hang in there. I know, this is so awful and so hard.
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BraveCottonwood said:Hi Pinki. I'm so sorry. I
Hi Pinki. I'm so sorry. I completely understand. I was just diagnosed with IDC a few weeks ago. I had the same plastic surgery consult you did and left a complete mess. Everything you are saying is so familiar to me.
for me, personally, I sat with the decision, looked at zillions of photos (have you seen the Scar Project? Amazing, google it). And I came to the conclusion that if I end up with mastectomy (still not clear), I will not have reconstruction. I will just be flat, and ask for the flattest, nicest scar they can make. And maybe someday get a beautiful tattoo (google mastectomy tattoos!). I can wear prosthesis when I want curves or symmetry in clothing. and I can always change my mind at a later date, if I want to.
i made this decision because I didn't want the additional risk of major surgery with flaps, I don't like the thought of expanders or the fact that they are not permanent and need to be replaced, and I'm very active, with two kids still home and a husband with a disability and I just want to be functional and actibe and keep playing tennis and kayaking and not have a prolonged recovery. And asthetically, I'm just not convinced I will be happy with reconstruction anyway.
hang in there. I know, this is so awful and so hard.
Cottonwood,
Thanks for your thoughts and sorry that your having to experience this like me! I think you're a brave woman, but I know flat and prosthetics are not for me. In fact, I actually fear the flatness, which is at least partly why I fear the expanders (along with the infections that occur, which is what causes women trying for reconstruction to be flat and have delays in their reconstruction process). It seems I'm actually a little vain and in some way attach at least part of my femininty and sexuality to my breasts (much to my best friend's dismay as she feels by some of my talk that I'm putting my breasts ahead of my health as I seek to find the best solution for me). As for me . . . I just think I'm trying to find what will probably be an imperfect solution that will allow me to get through this less than ideal situation.
Anyway, best wishes to you! May 2016 be a good year for us both!!
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