I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
Hi, Catann. I hate that you are having to go through this, but I am thrilled to hear your overall prognosis is very good. I would like to know whether or not your cancer is triple negative. Mine was and I think it is helpful to know in order to figure out treatment, surgery, etc.
Hi nataliehope, I am sorry I did not see this until now. I hope this is not too late to be of help.
As you know, I did have the nipple-sparing double mastectomy. I am now 25 months post-op and am still happy with my decision. I am alive and healthy and am glad to have passed the dreaded 2-year mark.
Re my recovery, I will share my journey and observations. (Caution: Long post ahead!)
.....
1. From the beginning, both nipples retained sensation, which was a relief. They became blanched (pale) after the surgery due to some of the nerves and circulation being cut, and they have remained so since.
2. The implants put in were larger than my breasts before surgery. The reconstructive surgeon had asked me, "do you want to go smaller or larger?" I replied, "Well, not smaller, but maybe a little more perky?". She told me after the procedure in my follow-up that the team of doctors looked at the options (they bring 3 sets with them to surgery) and had voted on the best choice. I now have a D-cup. I had a C-cup before. The weight of the breast implants required that for at least the first 18 months I had to wear a bra, day or night or my breasts would ache from the pull on the tissue. Would it have been less if I hadn't gone bigger? I don't know. Now, I can go around bra-less at home and am fine. Sometimes though, I can feel that I need to put a bra back on for a bit. I was a curvy girl, so going smaller (or without breasts at all) would not have appealed to me or my husband I don't think.
3. The area from the nipples to the center of my chest never lost sensation, but from the nipple all the way around to the sides of my back and halfway down my stomach was numb for quite a while. Now, I have an area the size of my hand from my arm pits to my nipple on each side that is still numb. Everything else has gotten feeling back. This same area is cooler than the rest of the breast and stomach, but not enough to matter.
4. The genomics tests I had done had indicated that I would not be helped with radiation or chemotherapy. That was a relief as I really did not want either. I did have to go off my female hormone replacement therapy and that was difficult at first. I began getting hot flashes, started to lose hair around my front hairline and had other 'dry' issues. I also became ravenous and struggled with weight gain that would not come off. That has abated, somewhat.
5. Post surgery, I was grateful to have seen a very kind Integrative Medicine Doctor at Mayo who talked to me about 'why' I got cancer. I was a former athlete, non-smoker, non-drinker, health nut. He was very helpful. He mentioned that pain, sorrow, stress, and unhappiness will weaken the immune system. I had gone through some terrible years of stress and sorrow before my cancer diagnosis. He suggested that I protect myself and try and prevent a further occurrence of cancer. He directed me to get as thin as I could, healthfully. Fat holds inflammation. Stopping my replacement hormones stimulated my appetite. He told me my body wanted to build fat to replace the missing estrogen and that is why I was very hungry all the time. He said I had to fight it and lose any fat I had anyway.
He wanted me to do exercise and meditation. He gave me tapes to listen to. He recommended yoga, and other slow moving exercises like Qigong. He told me to remove or avoid individuals in my life who cause me grief or pain. He said to remove myself from a situation if I felt upset for any reason. I have done this. Even things like a violent movie or something on the news. I just get up and exit the room for a minute and take deep breaths. My family understands this.
6. My cancer was Stage III-A, invasive and in situ. My right breast had 3 fairly large tumors and one mass of unknown origin (??). Two lymph nodes tested positive and so the surgeon removed a whole line of them for good measure - 17 of them! So, my right arm sometimes aches and swells a bit if I am doing a lot of computer work or housecleaning. I just gently massage and elevate it and it is OK.
7. There are a number of non-FDA approved remedies coming to light that are in clinical studies for cancer eradication or prevention. I am a dedicated researcher and have read many studies. Many of these remedies are obtainable over the counter right now and for little cost. I take several of them along with many, many specific vitamins. So far, so good.
I hope you are well, and if there is anything else you can think of that I can answer, please let me know.
Good luck to you and all the other ladies out there!
I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
Hello catann,
I would like to give my opinion and you can do whatever you want with it.
I had one breast that had 3 tumors and 1 mass of unknown origin (?) and together they spanned from the 6:00 o'clock position all the way around the outside of my right breast to the 1:00 o'clock position. I opted for mastectomy on BOTH sides with immediate replacement with silicone implants. That means I would never need to come back for a cancer in the other one in the future.
Also, it would be one surgery, one insurance claim, two matching breast implants of equal size, matching equal scars, and only one recovery. Plus, no more mammograms, MRIs or biopsies or pokes or prods or worries about the remaining good breast in the future.
Removing that worry and that dread of recurrence in the other breast was important to me, and so it was a 'One and Done'. It has now been 25 months since surgery and I am doing fine and have a nice set of matching breasts that look very nice in clothes and not too bad naked, if you don't mind the single 4.5 inch-long scars on the sides of each breast.
Why choose implants over an autologous fat & tissue transfer? Well, I'll tell you why I did. First, I am a researcher and read everything I could get my hands on and learned everything I could before coming to my decision. I learned that removing tissue from one part of the body and moving it to another is not so simple.
The donor site will have quite a bit of surgery and will be vulnerable to infection and be painful and require care and recovery.
Also, removing large areas of tissue and fat may cause the donor area to look abnormal and deformed, rendering that part of your body unsatisfactory and a source of disappointment. (We have this fantasy that we will remove that spare fat around the hips or the waist and put it in the breast getting a 'Two-fer'). The truth is, that is not what will happen. The preferred technique to liposuction fat for aesthetics, will damage the fat cells, but preserve the aesthetics. The technique to harvest fat and tissue for reuse is focused on preserving the fat integrity and not so much on the aesthetics of the area you are removing it from, if you follow. It is more invasive and will leave large scars and depressions unless you have a very skilled surgeon with much experience in this technique.
Additionally, the donor fat and tissue can sometimes fail to develop an adequate blood supply at its new location, thus requiring multiple attempts. Even when successful, the transplanted fat can develop granulomas which are opaque can be mistaken for potential tumors on an MRI.
Also, there is the issue of shape. Trying to approximate the breast you had with the tissue from your abdomen, flank or thighs may look different from the breast you were hoping for. Sometimes, more surgery or liposuction and injections must be made, to get the shape and size approximation you wish. It may never look like the other breast. Only you can decide if that matters to you, and how much pain and recovery you are willing to go through to create a 'non-implant' breast.
Remember, you will be creating a wound in a healthy part of your body and will have two locations of injury rather than just one.
I say, why deface and injure another part of your body if you don't have to? It is a much simpler procedure to place a perfectly sized and shaped breast implant in the space of your former breast and just recover from that. I think I know that you were hoping to avoid the potential issues that breast implants present, but they truly can last a very long time (20+ years) if you take care of them.
I hope this was of some help. Only you can decide what is best for you. Do lots of research and satisfy yourself.
Good luck.
Hi I am debating nipple sparing double Mastectomy. How are you recovering are you happy with your decision almost a year and a half later? I loved all the points you made and I have similar thoughts and beliefs, I am 42 stage one IDC.
Hi nataliehope, I am sorry I did not see this until now. I hope this is not too late to be of help.
As you know, I did have the nipple-sparing double mastectomy. I am now 25 months post-op and am still happy with my decision. I am alive and healthy and am glad to have passed the dreaded 2-year mark.
Re my recovery, I will share my journey and observations. (Caution: Long post ahead!)
.....
1. From the beginning, both nipples retained sensation, which was a relief. They became blanched (pale) after the surgery due to some of the nerves and circulation being cut, and they have remained so since.
2. The implants put in were larger than my breasts before surgery. The reconstructive surgeon had asked me, "do you want to go smaller or larger?" I replied, "Well, not smaller, but maybe a little more perky?". She told me after the procedure in my follow-up that the team of doctors looked at the options (they bring 3 sets with them to surgery) and had voted on the best choice. I now have a D-cup. I had a C-cup before. The weight of the breast implants required that for at least the first 18 months I had to wear a bra, day or night or my breasts would ache from the pull on the tissue. Would it have been less if I hadn't gone bigger? I don't know. Now, I can go around bra-less at home and am fine. Sometimes though, I can feel that I need to put a bra back on for a bit. I was a curvy girl, so going smaller (or without breasts at all) would not have appealed to me or my husband I don't think.
3. The area from the nipples to the center of my chest never lost sensation, but from the nipple all the way around to the sides of my back and halfway down my stomach was numb for quite a while. Now, I have an area the size of my hand from my arm pits to my nipple on each side that is still numb. Everything else has gotten feeling back. This same area is cooler than the rest of the breast and stomach, but not enough to matter.
4. The genomics tests I had done had indicated that I would not be helped with radiation or chemotherapy. That was a relief as I really did not want either. I did have to go off my female hormone replacement therapy and that was difficult at first. I began getting hot flashes, started to lose hair around my front hairline and had other 'dry' issues. I also became ravenous and struggled with weight gain that would not come off. That has abated, somewhat.
5. Post surgery, I was grateful to have seen a very kind Integrative Medicine Doctor at Mayo who talked to me about 'why' I got cancer. I was a former athlete, non-smoker, non-drinker, health nut. He was very helpful. He mentioned that pain, sorrow, stress, and unhappiness will weaken the immune system. I had gone through some terrible years of stress and sorrow before my cancer diagnosis. He suggested that I protect myself and try and prevent a further occurrence of cancer. He directed me to get as thin as I could, healthfully. Fat holds inflammation. Stopping my replacement hormones stimulated my appetite. He told me my body wanted to build fat to replace the missing estrogen and that is why I was very hungry all the time. He said I had to fight it and lose any fat I had anyway.
He wanted me to do exercise and meditation. He gave me tapes to listen to. He recommended yoga, and other slow moving exercises like Qigong. He told me to remove or avoid individuals in my life who cause me grief or pain. He said to remove myself from a situation if I felt upset for any reason. I have done this. Even things like a violent movie or something on the news. I just get up and exit the room for a minute and take deep breaths. My family understands this.
6. My cancer was Stage III-A, invasive and in situ. My right breast had 3 fairly large tumors and one mass of unknown origin (??). Two lymph nodes tested positive and so the surgeon removed a whole line of them for good measure - 17 of them! So, my right arm sometimes aches and swells a bit if I am doing a lot of computer work or housecleaning. I just gently massage and elevate it and it is OK.
7. There are a number of non-FDA approved remedies coming to light that are in clinical studies for cancer eradication or prevention. I am a dedicated researcher and have read many studies. Many of these remedies are obtainable over the counter right now and for little cost. I take several of them along with many, many specific vitamins. So far, so good.
I hope you are well, and if there is anything else you can think of that I can answer, please let me know.
Good luck to you and all the other ladies out there!
I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
Hi, how big is your tumor? I did not opt for any surgery. I was diagnosed with stage 1 IDC low growth. I just radically changed my lifestyle and diet, I feel better now than I ever did. I’m 42.
I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
I am having my reconstruction in August. I went to over all the options and decided to go with an implant. I have already done the spacer so now they will place the real implant. I was going to do a flap but I am 72 and my doctor thought the procedure would be too much.
@nataliehope I'm 68 and am Stage 3 infiltrating breast cancer metastasized to lymph nodes with 1 cancerous node extruding to lymph system as well as neuroendocrine cancer of breast in second tumor. The nipples were not a problem, that is why I have the "lollipop" scars.
Hi @kruzin - I don't know if I'm too late to post my experience as you may have already gone ahead and done your surgery. But, if not,
I wanted to share my information with you, if it might help you.
I just had my bilateral mastectomy with reconstruction less than a month ago. I had biopsies in both breasts. I learned one breast had cancer the other tested out benign. The diseased breast had several large masses that all tested malignant and a lumpectomy was not deemed 'ideal' due to the amount of tissue removal involved so a full mastectomy was indicated for that one breast.
I am a research nut and did copious research on the subject and also had 2 consults with the breast surgeon and 2 with the plastic surgeon before deciding. I also spoke with my spouse, 2 children and daughter-in-law who's a nurse. During my weeks of contemplation and research, I subscribed to MedScape and read many of their published medical studies on mastectomy and breast cancer, including survival rates, surgery options, decisions made by patients who chose a particular option and comments from nurses and surgeons. I also searched every article I could on the internet and read many patients' comments.
In the end, I decided to remove both breasts and do immediate implant placement in both. I knew I wanted reconstruction as I would be too depressed otherwise. Mental health is equally as important as physical health and should be weighed as carefully, in my opinion.
My reasoning for doing a bilateral mastectomy and immediate reconstruction rather than just doing one breast is as follows:
* If both were done at once, the plastic surgeon would be able to make both breasts match closely, utilizing the new Alloderm artificial skin and identical silicone breast implants.
* I currently have excellent insurance and who knows what I may have years from now if the healthy, remaining breast were to develop something.
* I will never be younger than I am now, and my chance of a good recovery should be better now than years down the road (if cancer were to develop again).
* I would have one time off from work, one (longer) procedure day, one hospitalization, one anesthesia, and one recovery.
* Both breast gone = no further mammos, MRI's, no chemo, no radiation, (hopefully??) and no further worry about the other shoe dropping with the remaining 'healthy' breast developing something down the road. I have read how women who have cancer in one breast must go in and have any remaining breast tissue looked at and poked and prodded yearly for the rest of their lives. I wanted to avoid that if I could. Who needs more stress and worry?
* In addition, my healthy breast had been banged up pretty good with a stereotactic biopsy and had developed a large, hard lump and depression at the point of entry. I felt that it was now injured and may be more susceptible to getting cancer (gut feeling) which further directed me to going forward with both mastectomies.
All-in-all, I am currently glad I chose as I did, however I am still in recovery and may come to a different conclusion later, but I'm hoping for the best!
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Hi, Catann. I hate that you are having to go through this, but I am thrilled to hear your overall prognosis is very good. I would like to know whether or not your cancer is triple negative. Mine was and I think it is helpful to know in order to figure out treatment, surgery, etc.
The dreaded two-year mark that you refer to?
Hello catann,
I would like to give my opinion and you can do whatever you want with it.
I had one breast that had 3 tumors and 1 mass of unknown origin (?) and together they spanned from the 6:00 o'clock position all the way around the outside of my right breast to the 1:00 o'clock position. I opted for mastectomy on BOTH sides with immediate replacement with silicone implants. That means I would never need to come back for a cancer in the other one in the future.
Also, it would be one surgery, one insurance claim, two matching breast implants of equal size, matching equal scars, and only one recovery. Plus, no more mammograms, MRIs or biopsies or pokes or prods or worries about the remaining good breast in the future.
Removing that worry and that dread of recurrence in the other breast was important to me, and so it was a 'One and Done'. It has now been 25 months since surgery and I am doing fine and have a nice set of matching breasts that look very nice in clothes and not too bad naked, if you don't mind the single 4.5 inch-long scars on the sides of each breast.
Why choose implants over an autologous fat & tissue transfer? Well, I'll tell you why I did. First, I am a researcher and read everything I could get my hands on and learned everything I could before coming to my decision. I learned that removing tissue from one part of the body and moving it to another is not so simple.
The donor site will have quite a bit of surgery and will be vulnerable to infection and be painful and require care and recovery.
Also, removing large areas of tissue and fat may cause the donor area to look abnormal and deformed, rendering that part of your body unsatisfactory and a source of disappointment. (We have this fantasy that we will remove that spare fat around the hips or the waist and put it in the breast getting a 'Two-fer'). The truth is, that is not what will happen. The preferred technique to liposuction fat for aesthetics, will damage the fat cells, but preserve the aesthetics. The technique to harvest fat and tissue for reuse is focused on preserving the fat integrity and not so much on the aesthetics of the area you are removing it from, if you follow. It is more invasive and will leave large scars and depressions unless you have a very skilled surgeon with much experience in this technique.
Additionally, the donor fat and tissue can sometimes fail to develop an adequate blood supply at its new location, thus requiring multiple attempts. Even when successful, the transplanted fat can develop granulomas which are opaque can be mistaken for potential tumors on an MRI.
Also, there is the issue of shape. Trying to approximate the breast you had with the tissue from your abdomen, flank or thighs may look different from the breast you were hoping for. Sometimes, more surgery or liposuction and injections must be made, to get the shape and size approximation you wish. It may never look like the other breast. Only you can decide if that matters to you, and how much pain and recovery you are willing to go through to create a 'non-implant' breast.
Remember, you will be creating a wound in a healthy part of your body and will have two locations of injury rather than just one.
I say, why deface and injure another part of your body if you don't have to? It is a much simpler procedure to place a perfectly sized and shaped breast implant in the space of your former breast and just recover from that. I think I know that you were hoping to avoid the potential issues that breast implants present, but they truly can last a very long time (20+ years) if you take care of them.
I hope this was of some help. Only you can decide what is best for you. Do lots of research and satisfy yourself.
Good luck.
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2 ReactionsHi nataliehope, I am sorry I did not see this until now. I hope this is not too late to be of help.
As you know, I did have the nipple-sparing double mastectomy. I am now 25 months post-op and am still happy with my decision. I am alive and healthy and am glad to have passed the dreaded 2-year mark.
Re my recovery, I will share my journey and observations. (Caution: Long post ahead!)
.....
1. From the beginning, both nipples retained sensation, which was a relief. They became blanched (pale) after the surgery due to some of the nerves and circulation being cut, and they have remained so since.
2. The implants put in were larger than my breasts before surgery. The reconstructive surgeon had asked me, "do you want to go smaller or larger?" I replied, "Well, not smaller, but maybe a little more perky?". She told me after the procedure in my follow-up that the team of doctors looked at the options (they bring 3 sets with them to surgery) and had voted on the best choice. I now have a D-cup. I had a C-cup before. The weight of the breast implants required that for at least the first 18 months I had to wear a bra, day or night or my breasts would ache from the pull on the tissue. Would it have been less if I hadn't gone bigger? I don't know. Now, I can go around bra-less at home and am fine. Sometimes though, I can feel that I need to put a bra back on for a bit. I was a curvy girl, so going smaller (or without breasts at all) would not have appealed to me or my husband I don't think.
3. The area from the nipples to the center of my chest never lost sensation, but from the nipple all the way around to the sides of my back and halfway down my stomach was numb for quite a while. Now, I have an area the size of my hand from my arm pits to my nipple on each side that is still numb. Everything else has gotten feeling back. This same area is cooler than the rest of the breast and stomach, but not enough to matter.
4. The genomics tests I had done had indicated that I would not be helped with radiation or chemotherapy. That was a relief as I really did not want either. I did have to go off my female hormone replacement therapy and that was difficult at first. I began getting hot flashes, started to lose hair around my front hairline and had other 'dry' issues. I also became ravenous and struggled with weight gain that would not come off. That has abated, somewhat.
5. Post surgery, I was grateful to have seen a very kind Integrative Medicine Doctor at Mayo who talked to me about 'why' I got cancer. I was a former athlete, non-smoker, non-drinker, health nut. He was very helpful. He mentioned that pain, sorrow, stress, and unhappiness will weaken the immune system. I had gone through some terrible years of stress and sorrow before my cancer diagnosis. He suggested that I protect myself and try and prevent a further occurrence of cancer. He directed me to get as thin as I could, healthfully. Fat holds inflammation. Stopping my replacement hormones stimulated my appetite. He told me my body wanted to build fat to replace the missing estrogen and that is why I was very hungry all the time. He said I had to fight it and lose any fat I had anyway.
He wanted me to do exercise and meditation. He gave me tapes to listen to. He recommended yoga, and other slow moving exercises like Qigong. He told me to remove or avoid individuals in my life who cause me grief or pain. He said to remove myself from a situation if I felt upset for any reason. I have done this. Even things like a violent movie or something on the news. I just get up and exit the room for a minute and take deep breaths. My family understands this.
6. My cancer was Stage III-A, invasive and in situ. My right breast had 3 fairly large tumors and one mass of unknown origin (??). Two lymph nodes tested positive and so the surgeon removed a whole line of them for good measure - 17 of them! So, my right arm sometimes aches and swells a bit if I am doing a lot of computer work or housecleaning. I just gently massage and elevate it and it is OK.
7. There are a number of non-FDA approved remedies coming to light that are in clinical studies for cancer eradication or prevention. I am a dedicated researcher and have read many studies. Many of these remedies are obtainable over the counter right now and for little cost. I take several of them along with many, many specific vitamins. So far, so good.
I hope you are well, and if there is anything else you can think of that I can answer, please let me know.
Good luck to you and all the other ladies out there!
As they say, "Where we go one, we go all!"
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6 ReactionsHi, how big is your tumor? I did not opt for any surgery. I was diagnosed with stage 1 IDC low growth. I just radically changed my lifestyle and diet, I feel better now than I ever did. I’m 42.
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1 Reaction@catann, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about breast reconstruction. I did this so you can connect with @bomashisha @nataliehope @sandyjr @lucillem72 @bmerxbauer @casualobserver @jspencer @kruzin and others. Simply click VIEW & REPLY in the email notification to read through the past posts.
While we wait for others to join the conversation, you might also be interested in these videos:
- Videos about Breast Cancer Surgery from Mayo Experts https://connect.mayoclinic.org/discussion/videos-about-breast-cancer-surgery-from-mayo-experts/
Catann, will surgery be the only treatment you'll need or will you have radiation? Feel free to ask questions. There's a whole group waiting to help 🙂
I recently was diagnosed with breast cancer. Fortunately my overall prognosis is very good. The cancer has not spread and the doctors do not think I will need chemotherapy. My tumor is quite large however. As a result, I have to have a mastectomy. I have decided that I would like to do the reconstruction and I am leaning toward using my own tissue. This is a very complicated procedure, so before I make a final decision, I would love to hear from someone who has been through this type of reconstruction.
I am having my reconstruction in August. I went to over all the options and decided to go with an implant. I have already done the spacer so now they will place the real implant. I was going to do a flap but I am 72 and my doctor thought the procedure would be too much.
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1 Reaction@nataliehope I'm 68 and am Stage 3 infiltrating breast cancer metastasized to lymph nodes with 1 cancerous node extruding to lymph system as well as neuroendocrine cancer of breast in second tumor. The nipples were not a problem, that is why I have the "lollipop" scars.
Hi, this is very helpful, did you have nipple sparing? How old are you, I find your story very similar to mine.
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