Had reconstruction and revisions after mastectomy. My fat was used to make a new breast. I'm still facing another revision.
Had Anestrozole for a short time - go 3 trigger fingers and my hair thinned.
Wow, I am sorry you and @tessspike are having these joint and movement issues from endocrine therapy. There are quite a few conversations about these side effects.
There are quite a few people who could use your firsthand knowledge about these issues. Maybe even the validation for others knowing that you can “feel their pain” is helpful.
Do you have any insight to share on lumpectomy or mastectomy, flat or reconstruction?
As uncomfortable as the AI made me feel/ combined with Prolia for my bones, I did my best to stick it out. I don’t know why I fell apart to the degree that I did in February. My oncologist said I should hang in until June 1, but my endo saw no reason to stop. So I liked her opinion better! I will let you all know how my 5 year check ups go this week. MRI was this morning (and Covid finally got through my mask last month!) This MRI was more stressful than the one when everyone was pretty sure it was cancer. Now, it’s fingers crossed and prayers!
Well—he jokingly said that I was looking good for my age and making his job easier. I was 63. I had it done 2 months after the expanders so it will be 5 years in August. He asked me for permission to feature them on his medical website. Who knew, haha!
I went with silicone gummy implants because I didn’t want several more surgical sites to use my own tissue. I asked my plastic surgeon to give me the same look that I had pre double mastectomy. He amazingly did it, but they are too tight (they also are ice cold all the time on the bottom half). I have sensation on most of my skin but not my nipples, yet they react to the cold. I often wonder if working out causes the muscle to make them feel tight and maybe he could have gone a little bit smaller to compensate. I have to admit they look just like my real breasts but I am always aware of my left side, otherwise most days I probably would not think about it if they both could feel like the one on the right.
We must have been typing at the same time.
You must have a great plastic surgeon to make them so perfect. How long ago did you have your reconstruction?
It’s so strange. I almost made it to 5 years on AI and then developed tendinitis, in both hands, worse on dominant hand. I went to my husband’s hand surgeon who gave me cortisone at 2 sites on one hand and a brace like you would wear for carpal for 5 weeks. He said my finger joints were inflamed and to take turmeric and ginger. I have similar pain on the inside of both knees and backs of both ankles. I am too burned out to see an orthopedic or rheumatologist right now. But it is also tendinitis. As I was sorting my papers for all my 5 year follow-ups I came across the carpal tunnel/ tendinitis side effect on the list. I just can’t believe it took so long but maybe I am completely drying up, since they can’t find my ovaries either!
Wow, I am sorry you and @tessspike are having these joint and movement issues from endocrine therapy. There are quite a few conversations about these side effects.
There are quite a few people who could use your firsthand knowledge about these issues. Maybe even the validation for others knowing that you can “feel their pain” is helpful.
Do you have any insight to share on lumpectomy or mastectomy, flat or reconstruction?
I would love to hear more about decisions regarding reconstruction. There seems to be a few folks out there asking these questions.
What was your choice? Are you happy with the decision you made? Did your doctor agree or did you have to fight for what you wanted?
I went with silicone gummy implants because I didn’t want several more surgical sites to use my own tissue. I asked my plastic surgeon to give me the same look that I had pre double mastectomy. He amazingly did it, but they are too tight (they also are ice cold all the time on the bottom half). I have sensation on most of my skin but not my nipples, yet they react to the cold. I often wonder if working out causes the muscle to make them feel tight and maybe he could have gone a little bit smaller to compensate. I have to admit they look just like my real breasts but I am always aware of my left side, otherwise most days I probably would not think about it if they both could feel like the one on the right.
Strangely, I developed carpel tunnel syndrome. And it was not in the hand I used all day long to manipulate a ball mouse doing graphic design. After surgery (simple) I discovered it was a possible side effect!
It’s so strange. I almost made it to 5 years on AI and then developed tendinitis, in both hands, worse on dominant hand. I went to my husband’s hand surgeon who gave me cortisone at 2 sites on one hand and a brace like you would wear for carpal for 5 weeks. He said my finger joints were inflamed and to take turmeric and ginger. I have similar pain on the inside of both knees and backs of both ankles. I am too burned out to see an orthopedic or rheumatologist right now. But it is also tendinitis. As I was sorting my papers for all my 5 year follow-ups I came across the carpal tunnel/ tendinitis side effect on the list. I just can’t believe it took so long but maybe I am completely drying up, since they can’t find my ovaries either!
I was 38 when I started treatment for triple negative stage 3B and lymph nodes, skin, chest wall. I had a mastectomy and tissue expanders put in after a few months of chemo, then we waited and I did 7 weeks of radiation.
In September I had a DEIP Flap. My plastic surgeon had a fancy PowerPoint that he went through when I was first diagnosed. He had a graph of people's perceived quality of life shortly after surgeries and then in the long term, and from the data it looked like everybody was happy post surgery but in the years that followed people's satisfaction went down or up depending on which way they went. The DEIP Flap had a high satisfaction rate 5, 10, 15 years out.
When I just had the tissue expander in I did feel that maybe it would be fine and we could skip the whole second reconstruction, and it was frustrating having a second surgery. I had to stay in the hospital for 4 days to make sure all the blood vessels continue to be hooked up properly, and I had a 1-year-old at home at the time who was freaking out. Luckily the healing process was much better than my first surgery I think because I wasn't on IV chemo I was on a pill chemo.
Now 9 months out I am so happy I went ahead and got my reconstruction. It's nice not to have to worry about anything leaking, I can go to all my scans and MRIs without worrying about tissue expanders or other things. Because of my extensive radiation I'm not symmetrical or anything like that and we had to work on the other side so I've got scars all over the place but I don't care.
I haven't had feeling on the reconstructed breast, but I see that as a pro. Sometimes if my husband wants to get touchy feely and my other side is feeling overly sensitive I can always redirect him to the resurrected boob, lol.
Strangely, I developed carpel tunnel syndrome. And it was not in the hand I used all day long to manipulate a ball mouse doing graphic design. After surgery (simple) I discovered it was a possible side effect!
I'm so glad you listened to your feelings, and it worked out for the best! I'm going to talk to my surgeon about this, but she sounds like I should just do the one, but we'll see. It's different when someone doesn't have this to say, and this is a business to make money. But I'm doing lots of research, and you've helped so much and I appreciate lots
Hello,
I am 55 and before surgery I was stage 3 her2 with lymph nodes affected.
I had a bi lateral mastectomy and healed in 4 weeks to a point I was back at work with limited lifting.
I have PT and feel relieved that both breasts are removed.
Insurance covered all and will cover all reconstruction in the future. I have feeling on the skin of my breasts and also to the touch in between my breasts.
I laugh when I feel a draft!
I had skin sparing so I was not conservative!
Life ahead of cosmetics.
I am blessed to have family send amazing team of doctors.
Continuing with my treatment plan post surgery.
I feel back to my energy level 5 months out of surgery 7 weeks out of radiation and continuing chemo as preventative.
Living my life looking forward.
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Connect
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Helpful
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Had reconstruction and revisions after mastectomy. My fat was used to make a new breast. I'm still facing another revision.
Had Anestrozole for a short time - go 3 trigger fingers and my hair thinned.
As uncomfortable as the AI made me feel/ combined with Prolia for my bones, I did my best to stick it out. I don’t know why I fell apart to the degree that I did in February. My oncologist said I should hang in until June 1, but my endo saw no reason to stop. So I liked her opinion better! I will let you all know how my 5 year check ups go this week. MRI was this morning (and Covid finally got through my mask last month!) This MRI was more stressful than the one when everyone was pretty sure it was cancer. Now, it’s fingers crossed and prayers!
-
Like -
Helpful -
Hug
2 ReactionsWell—he jokingly said that I was looking good for my age and making his job easier. I was 63. I had it done 2 months after the expanders so it will be 5 years in August. He asked me for permission to feature them on his medical website. Who knew, haha!
-
Like -
Helpful -
Hug
3 ReactionsWe must have been typing at the same time.
You must have a great plastic surgeon to make them so perfect. How long ago did you have your reconstruction?
Wow, I am sorry you and @tessspike are having these joint and movement issues from endocrine therapy. There are quite a few conversations about these side effects.
There are quite a few people who could use your firsthand knowledge about these issues. Maybe even the validation for others knowing that you can “feel their pain” is helpful.
Do you have any insight to share on lumpectomy or mastectomy, flat or reconstruction?
I went with silicone gummy implants because I didn’t want several more surgical sites to use my own tissue. I asked my plastic surgeon to give me the same look that I had pre double mastectomy. He amazingly did it, but they are too tight (they also are ice cold all the time on the bottom half). I have sensation on most of my skin but not my nipples, yet they react to the cold. I often wonder if working out causes the muscle to make them feel tight and maybe he could have gone a little bit smaller to compensate. I have to admit they look just like my real breasts but I am always aware of my left side, otherwise most days I probably would not think about it if they both could feel like the one on the right.
-
Like -
Helpful -
Hug
6 ReactionsIt’s so strange. I almost made it to 5 years on AI and then developed tendinitis, in both hands, worse on dominant hand. I went to my husband’s hand surgeon who gave me cortisone at 2 sites on one hand and a brace like you would wear for carpal for 5 weeks. He said my finger joints were inflamed and to take turmeric and ginger. I have similar pain on the inside of both knees and backs of both ankles. I am too burned out to see an orthopedic or rheumatologist right now. But it is also tendinitis. As I was sorting my papers for all my 5 year follow-ups I came across the carpal tunnel/ tendinitis side effect on the list. I just can’t believe it took so long but maybe I am completely drying up, since they can’t find my ovaries either!
-
Like -
Helpful -
Hug
4 ReactionsI was 38 when I started treatment for triple negative stage 3B and lymph nodes, skin, chest wall. I had a mastectomy and tissue expanders put in after a few months of chemo, then we waited and I did 7 weeks of radiation.
In September I had a DEIP Flap. My plastic surgeon had a fancy PowerPoint that he went through when I was first diagnosed. He had a graph of people's perceived quality of life shortly after surgeries and then in the long term, and from the data it looked like everybody was happy post surgery but in the years that followed people's satisfaction went down or up depending on which way they went. The DEIP Flap had a high satisfaction rate 5, 10, 15 years out.
When I just had the tissue expander in I did feel that maybe it would be fine and we could skip the whole second reconstruction, and it was frustrating having a second surgery. I had to stay in the hospital for 4 days to make sure all the blood vessels continue to be hooked up properly, and I had a 1-year-old at home at the time who was freaking out. Luckily the healing process was much better than my first surgery I think because I wasn't on IV chemo I was on a pill chemo.
Now 9 months out I am so happy I went ahead and got my reconstruction. It's nice not to have to worry about anything leaking, I can go to all my scans and MRIs without worrying about tissue expanders or other things. Because of my extensive radiation I'm not symmetrical or anything like that and we had to work on the other side so I've got scars all over the place but I don't care.
I haven't had feeling on the reconstructed breast, but I see that as a pro. Sometimes if my husband wants to get touchy feely and my other side is feeling overly sensitive I can always redirect him to the resurrected boob, lol.
-
Like -
Helpful -
Hug
5 ReactionsStrangely, I developed carpel tunnel syndrome. And it was not in the hand I used all day long to manipulate a ball mouse doing graphic design. After surgery (simple) I discovered it was a possible side effect!
-
Like -
Helpful -
Hug
2 ReactionsHello,
I am 55 and before surgery I was stage 3 her2 with lymph nodes affected.
I had a bi lateral mastectomy and healed in 4 weeks to a point I was back at work with limited lifting.
I have PT and feel relieved that both breasts are removed.
Insurance covered all and will cover all reconstruction in the future. I have feeling on the skin of my breasts and also to the touch in between my breasts.
I laugh when I feel a draft!
I had skin sparing so I was not conservative!
Life ahead of cosmetics.
I am blessed to have family send amazing team of doctors.
Continuing with my treatment plan post surgery.
I feel back to my energy level 5 months out of surgery 7 weeks out of radiation and continuing chemo as preventative.
Living my life looking forward.
-
Like -
Helpful -
Hug
7 Reactions