I hope you still get back on this page occasionally to check messages. I am have the same issue as you. One breast cancer, the other has some calcium spots which could turn into cancer. I was going to go the lumpectomy route, but after reading all of the side effect from the estrogen blocking drugs and radiation I am wondering if a double mastectomy is the route to go? Did you have to call your insurance company to see if they would cover having both of them done?
just starting to research all of this, as I met with my surgeon 4 days ago and it is finally sinking in that this is way more than just a surgery... the after care is the hardest! Any follow up you can give would be wonderful
Yes your insurance will cover breast surgery and reconstruction ( including a non cancer breast should you desire) BY LAW!
Having a mastectomy doesn’t automatically mean no radiation ( but it could mean that) and certainly estrogen blockers are prescribed for estrogen positive breast cancer regardless of surgical procedure.
Unfortunately, There is no easy way out for us! But… we may prevent a recurrence.
FYI: I have been on Anastrozole for two years and I have mild joint pain
That I can mitigate with yoga and walking, my 2 year DEXA shows NO change ( I had good bone density to start) and a very slight increase in cholesterol. I do have some night sweating and I did have some insomnia issues until I switched to the brand vs. generic… now rarely.
Eagle Pharmacy ( online) in Florida sells ARIMIDIX brand for $60/mo vs $1700./mo at CVS ( not a typo! )
Best of luck to you making your decisions . It’s a challenge to understand all the parts!
I hope you still get back on this page occasionally to check messages. I am have the same issue as you. One breast cancer, the other has some calcium spots which could turn into cancer. I was going to go the lumpectomy route, but after reading all of the side effect from the estrogen blocking drugs and radiation I am wondering if a double mastectomy is the route to go? Did you have to call your insurance company to see if they would cover having both of them done?
just starting to research all of this, as I met with my surgeon 4 days ago and it is finally sinking in that this is way more than just a surgery... the after care is the hardest! Any follow up you can give would be wonderful
I hope you still get back on this page occasionally to check messages. I am have the same issue as you. One breast cancer, the other has some calcium spots which could turn into cancer. I was going to go the lumpectomy route, but after reading all of the side effect from the estrogen blocking drugs and radiation I am wondering if a double mastectomy is the route to go? Did you have to call your insurance company to see if they would cover having both of them done?
just starting to research all of this, as I met with my surgeon 4 days ago and it is finally sinking in that this is way more than just a surgery... the after care is the hardest! Any follow up you can give would be wonderful
Hi there! I hadn't been checking the page for a while now, but I see I missed your message. Connect Director Colleen Young tagged me! Thanks, Colleen.
Yes, I did call my insurance company and made sure I understood their parameters. Luckily, they did approve the double mastectomy, with full reconstruction on both immediately following. It was all covered, minus my deductible. I do highly recommend doing both at the same time i.e., both breasts and both reconstructed on the same day. The recovery was as you would expect, but I got through it. I do think buying an inexpensive foam wedge pillow (It was $20 at Walmart) with two king-size pillows positioned vertically on the sides allowed me to sleep on my back and prevented me from rolling or side-sleeping. I stayed on that wedge pillow/flat on my back position for at least 6 months.
For the record, I am so glad I did both and got the implants. I met women in the mastectomy recovery class (where we learned arm stretching exercises post-mastectomy) who only had one breast removed and reconstructed and you could tell in their clothes that their breasts were mismatched. Others had single or double mastectomies but opted to do no implants. Seeing those choices and how they looked, made me glad I chose what I did. But you must make this decision based on your own personal preferences.
You will have to buy new bras to fit your new figure, but that is kind of fun.
I am a massive researcher and am dialed into a number of medical research sites, so I went in with my eyes wide open and understood what I was in for and what I needed to worry about afterwards.
Now, I don't know if you know your 'Stage' of Cancer yet, but I was given a 'Stage III-A'. Not as bad as terminal Stage 4, but certainly bad enough to make me pay attention! (On certain cancer sites, Stage III-A has a 'not so good' long term prognosis, but I am out to prove them wrong!)
Important: See if you have the option of a genomics test to be done on your removed tissues. The genomics test tries various treatment modalities on your removed tissue and determines what treatment might work. I opted to have that done. It is an extra expense, but my insurance was willing to pay for that, too.
My genomics results showed that my type of cancer was unaffected by either chemo or radiation! But I was not surprised because I had found a national study with my type of breast cancer (a particular kind) and in that study, the radiation and chemo seemed to have no effect on the cancer then, either. So, I was not surprised when the test result came back like it did. Thus, I felt no guilt for turning down the options of both, as they weren't going to benefit me and may very well injury me.
As a personal choice, I also opted not to take the Estrogen blocker drug (the yellow pill) as I was already so Estrogen deficient that I knew I would be a mess if I shorted myself any further.
Instead, I opted to recover gently at home and investigate nutritional therapy, alternative off-label uses of approved medications and other therapies that are being tested in studies right now for cancer, but not yet 'approved' for breast cancer.
I don't believe I am allowed to mention what those therapies are on this board, but there are many woman like me using them with excellent results. Luckily, I too, am doing well and have had no further reoccurrence of any cancer (knock on wood). In May of 2024 it will be 6 years since my diagnosis. I hope to have many more years ahead of me! I hope that answers your questions. Let me know if you have any others. Good Luck!
Hello. I am currently in the process of reconstruction. The expanders are now being filled with saline solution weekly. I am 1 week out from the first injection. It is a process. So, 1st be willing to endure the process. I had the expanders inserted the same day at the mastectomy.
It is uncomfortable and some may say painful. However, I am able to do most activities and just take Tylenol when I need relief.
My surgeon and oncologist initially recommended against reconstruction IF it was determined I needed radiation. However, I did not have to receive radiation treatments.
Hi there! I hadn't been checking the page for a while now, but I see I missed your message. Connect Director Colleen Young tagged me! Thanks, Colleen.
Yes, I did call my insurance company and made sure I understood their parameters. Luckily, they did approve the double mastectomy, with full reconstruction on both immediately following. It was all covered, minus my deductible. I do highly recommend doing both at the same time i.e., both breasts and both reconstructed on the same day. The recovery was as you would expect, but I got through it. I do think buying an inexpensive foam wedge pillow (It was $20 at Walmart) with two king-size pillows positioned vertically on the sides allowed me to sleep on my back and prevented me from rolling or side-sleeping. I stayed on that wedge pillow/flat on my back position for at least 6 months.
For the record, I am so glad I did both and got the implants. I met women in the mastectomy recovery class (where we learned arm stretching exercises post-mastectomy) who only had one breast removed and reconstructed and you could tell in their clothes that their breasts were mismatched. Others had single or double mastectomies but opted to do no implants. Seeing those choices and how they looked, made me glad I chose what I did. But you must make this decision based on your own personal preferences.
You will have to buy new bras to fit your new figure, but that is kind of fun.
I am a massive researcher and am dialed into a number of medical research sites, so I went in with my eyes wide open and understood what I was in for and what I needed to worry about afterwards.
Now, I don't know if you know your 'Stage' of Cancer yet, but I was given a 'Stage III-A'. Not as bad as terminal Stage 4, but certainly bad enough to make me pay attention! (On certain cancer sites, Stage III-A has a 'not so good' long term prognosis, but I am out to prove them wrong!)
Important: See if you have the option of a genomics test to be done on your removed tissues. The genomics test tries various treatment modalities on your removed tissue and determines what treatment might work. I opted to have that done. It is an extra expense, but my insurance was willing to pay for that, too.
My genomics results showed that my type of cancer was unaffected by either chemo or radiation! But I was not surprised because I had found a national study with my type of breast cancer (a particular kind) and in that study, the radiation and chemo seemed to have no effect on the cancer then, either. So, I was not surprised when the test result came back like it did. Thus, I felt no guilt for turning down the options of both, as they weren't going to benefit me and may very well injury me.
As a personal choice, I also opted not to take the Estrogen blocker drug (the yellow pill) as I was already so Estrogen deficient that I knew I would be a mess if I shorted myself any further.
Instead, I opted to recover gently at home and investigate nutritional therapy, alternative off-label uses of approved medications and other therapies that are being tested in studies right now for cancer, but not yet 'approved' for breast cancer.
I don't believe I am allowed to mention what those therapies are on this board, but there are many woman like me using them with excellent results. Luckily, I too, am doing well and have had no further reoccurrence of any cancer (knock on wood). In May of 2024 it will be 6 years since my diagnosis. I hope to have many more years ahead of me! I hope that answers your questions. Let me know if you have any others. Good Luck!
Love your story, it is very similar to mine. It is good to know that I am not alone in making an informed decision that fits your individualized needs. Research and being informed is key!
I too am on the journey to nutritional and alternative therapies. Diet and environmental factors are key contributors to cancer and other health issues. Making adjustments towards eating healthier foods and including exercise is so important. My oncologist said the key to healing from a double mastectomy was to start eating healthy and getting exercise prior to the surgery. I had gained advice of a nutritionist the day I found out about my diagnosis. I changed my diet and added exercise and I do contribute this to my being back at work (from home) within one week after a double mastectomy! I have never felt so good post-op, as with other surgeries, my healing and recovery times were very slow and painful.
Hi there! I hadn't been checking the page for a while now, but I see I missed your message. Connect Director Colleen Young tagged me! Thanks, Colleen.
Yes, I did call my insurance company and made sure I understood their parameters. Luckily, they did approve the double mastectomy, with full reconstruction on both immediately following. It was all covered, minus my deductible. I do highly recommend doing both at the same time i.e., both breasts and both reconstructed on the same day. The recovery was as you would expect, but I got through it. I do think buying an inexpensive foam wedge pillow (It was $20 at Walmart) with two king-size pillows positioned vertically on the sides allowed me to sleep on my back and prevented me from rolling or side-sleeping. I stayed on that wedge pillow/flat on my back position for at least 6 months.
For the record, I am so glad I did both and got the implants. I met women in the mastectomy recovery class (where we learned arm stretching exercises post-mastectomy) who only had one breast removed and reconstructed and you could tell in their clothes that their breasts were mismatched. Others had single or double mastectomies but opted to do no implants. Seeing those choices and how they looked, made me glad I chose what I did. But you must make this decision based on your own personal preferences.
You will have to buy new bras to fit your new figure, but that is kind of fun.
I am a massive researcher and am dialed into a number of medical research sites, so I went in with my eyes wide open and understood what I was in for and what I needed to worry about afterwards.
Now, I don't know if you know your 'Stage' of Cancer yet, but I was given a 'Stage III-A'. Not as bad as terminal Stage 4, but certainly bad enough to make me pay attention! (On certain cancer sites, Stage III-A has a 'not so good' long term prognosis, but I am out to prove them wrong!)
Important: See if you have the option of a genomics test to be done on your removed tissues. The genomics test tries various treatment modalities on your removed tissue and determines what treatment might work. I opted to have that done. It is an extra expense, but my insurance was willing to pay for that, too.
My genomics results showed that my type of cancer was unaffected by either chemo or radiation! But I was not surprised because I had found a national study with my type of breast cancer (a particular kind) and in that study, the radiation and chemo seemed to have no effect on the cancer then, either. So, I was not surprised when the test result came back like it did. Thus, I felt no guilt for turning down the options of both, as they weren't going to benefit me and may very well injury me.
As a personal choice, I also opted not to take the Estrogen blocker drug (the yellow pill) as I was already so Estrogen deficient that I knew I would be a mess if I shorted myself any further.
Instead, I opted to recover gently at home and investigate nutritional therapy, alternative off-label uses of approved medications and other therapies that are being tested in studies right now for cancer, but not yet 'approved' for breast cancer.
I don't believe I am allowed to mention what those therapies are on this board, but there are many woman like me using them with excellent results. Luckily, I too, am doing well and have had no further reoccurrence of any cancer (knock on wood). In May of 2024 it will be 6 years since my diagnosis. I hope to have many more years ahead of me! I hope that answers your questions. Let me know if you have any others. Good Luck!
Thank you for sharing your path. I'm so sorry you had to go through that. I too had to have double mastectomy with immediate reconstruction afterwards. 7.5 hours of surgery, 2 days in hospital & 8 weeks on the couch. Ugh. I wasn't informed about therapy after surgery for stretching or anything. I wanted to sleep in my bed but couldn't lay flat. I never thought to use a pillow wedge! Great tip!
Ice packs & pain meds were my friends for months. 4 drain tubes ugh, don't miss that at all.
Its been 2 years for me after surgery & I continue to see an Occupational therapist that I was suggested to see a year after surgery. She's helped me a great deal with lymphedema in arms, hands, chest & back. I see her weekly & SO very thankful to have her help me.
So much information is NOT shared with patients before or after surgery on what to expect. And especially on medicine if needed afterwards. I've got the CHCK2+ gene mutation so I've had multiple cancers already all within 2 years. Breast, thyroid & skin. And being estrogen/progesterone+, I'm not a candidate for hormone replacement therapy unfortunately!
So my Dr tells me I'm just going to have to "Tuff it out" when the time comes for menopause. I'm premenopausal now & praying I don't need a hysterectomy yet.
I wish I knew something to take for night sweats, brain fog & mood swings. I'm sure my husband would appreciate it lol.
Anyway, thank you again for your story.
God bless...
Hello. I am currently in the process of reconstruction. The expanders are now being filled with saline solution weekly. I am 1 week out from the first injection. It is a process. So, 1st be willing to endure the process. I had the expanders inserted the same day at the mastectomy.
It is uncomfortable and some may say painful. However, I am able to do most activities and just take Tylenol when I need relief.
My surgeon and oncologist initially recommended against reconstruction IF it was determined I needed radiation. However, I did not have to receive radiation treatments.
I am sorry you are having to deal with those expanders. But, it sounds like you have the right attitude! It is true about the radiation potentially ruining your new breast implants, though...
Here is how I learned about that: As I had mentioned previously, the genomics test revealed that radiation would be of no benefit in my case. Even so, the Oncology team set me up with an appointment with the Radiation Doc (post surgery) who offered the option of radiation if I still wanted to do it.
She discussed how she would have to direct the beam at my one affected breast from 3 different angles in each session, a total of 15 minutes x 5 days per week x 6 weeks (if I remember correctly).
After she was done explaining the process, I said, "Well now, let's talk about the potential side effects."
That's when I learned that radiation could:
- fry my vocal chords, which may permanently alter the sound of my voice,
- possibly injure/destroy my thyroid gland, (I am already hypothyroid),
- likely leave a scar on my lung which would be visible on x-rays forever after,
- could burn my skin on that breast,
- and something I didn't know about and that was that it would/could destroy my newly installed breast implant which would then have to be surgically removed and replaced afterwards!
Can you imagine! So I told the Doctor, "Hmm. I believe I will decline that option." She nodded in agreement. And, so far, so good!
I am sorry you are having to deal with those expanders. But, it sounds like you have the right attitude! It is true about the radiation potentially ruining your new breast implants, though...
Here is how I learned about that: As I had mentioned previously, the genomics test revealed that radiation would be of no benefit in my case. Even so, the Oncology team set me up with an appointment with the Radiation Doc (post surgery) who offered the option of radiation if I still wanted to do it.
She discussed how she would have to direct the beam at my one affected breast from 3 different angles in each session, a total of 15 minutes x 5 days per week x 6 weeks (if I remember correctly).
After she was done explaining the process, I said, "Well now, let's talk about the potential side effects."
That's when I learned that radiation could:
- fry my vocal chords, which may permanently alter the sound of my voice,
- possibly injure/destroy my thyroid gland, (I am already hypothyroid),
- likely leave a scar on my lung which would be visible on x-rays forever after,
- could burn my skin on that breast,
- and something I didn't know about and that was that it would/could destroy my newly installed breast implant which would then have to be surgically removed and replaced afterwards!
Can you imagine! So I told the Doctor, "Hmm. I believe I will decline that option." She nodded in agreement. And, so far, so good!
Oh...yes, I was forewarned about the side effects of radiation. I was sent to a chemo oncologist and radiation oncologist. Fortunately, the team of doctors determined radiation was not acceptable as a form of treatment in my case, only chemo. Thanks for your response, I have received some very positive and informative information in this thread.
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Yes your insurance will cover breast surgery and reconstruction ( including a non cancer breast should you desire) BY LAW!
Having a mastectomy doesn’t automatically mean no radiation ( but it could mean that) and certainly estrogen blockers are prescribed for estrogen positive breast cancer regardless of surgical procedure.
Unfortunately, There is no easy way out for us! But… we may prevent a recurrence.
FYI: I have been on Anastrozole for two years and I have mild joint pain
That I can mitigate with yoga and walking, my 2 year DEXA shows NO change ( I had good bone density to start) and a very slight increase in cholesterol. I do have some night sweating and I did have some insomnia issues until I switched to the brand vs. generic… now rarely.
Eagle Pharmacy ( online) in Florida sells ARIMIDIX brand for $60/mo vs $1700./mo at CVS ( not a typo! )
Best of luck to you making your decisions . It’s a challenge to understand all the parts!
-
Like -
Helpful -
Hug
1 ReactionWelcome, @gcimi. I'm tagging @casualobserver to make sure she sees your post and question to her.
Gcimi, have you made any decisions about surgery?
Hi there! I hadn't been checking the page for a while now, but I see I missed your message. Connect Director Colleen Young tagged me! Thanks, Colleen.
Yes, I did call my insurance company and made sure I understood their parameters. Luckily, they did approve the double mastectomy, with full reconstruction on both immediately following. It was all covered, minus my deductible. I do highly recommend doing both at the same time i.e., both breasts and both reconstructed on the same day. The recovery was as you would expect, but I got through it. I do think buying an inexpensive foam wedge pillow (It was $20 at Walmart) with two king-size pillows positioned vertically on the sides allowed me to sleep on my back and prevented me from rolling or side-sleeping. I stayed on that wedge pillow/flat on my back position for at least 6 months.
For the record, I am so glad I did both and got the implants. I met women in the mastectomy recovery class (where we learned arm stretching exercises post-mastectomy) who only had one breast removed and reconstructed and you could tell in their clothes that their breasts were mismatched. Others had single or double mastectomies but opted to do no implants. Seeing those choices and how they looked, made me glad I chose what I did. But you must make this decision based on your own personal preferences.
You will have to buy new bras to fit your new figure, but that is kind of fun.
I am a massive researcher and am dialed into a number of medical research sites, so I went in with my eyes wide open and understood what I was in for and what I needed to worry about afterwards.
Now, I don't know if you know your 'Stage' of Cancer yet, but I was given a 'Stage III-A'. Not as bad as terminal Stage 4, but certainly bad enough to make me pay attention! (On certain cancer sites, Stage III-A has a 'not so good' long term prognosis, but I am out to prove them wrong!)
Important: See if you have the option of a genomics test to be done on your removed tissues. The genomics test tries various treatment modalities on your removed tissue and determines what treatment might work. I opted to have that done. It is an extra expense, but my insurance was willing to pay for that, too.
My genomics results showed that my type of cancer was unaffected by either chemo or radiation! But I was not surprised because I had found a national study with my type of breast cancer (a particular kind) and in that study, the radiation and chemo seemed to have no effect on the cancer then, either. So, I was not surprised when the test result came back like it did. Thus, I felt no guilt for turning down the options of both, as they weren't going to benefit me and may very well injury me.
As a personal choice, I also opted not to take the Estrogen blocker drug (the yellow pill) as I was already so Estrogen deficient that I knew I would be a mess if I shorted myself any further.
Instead, I opted to recover gently at home and investigate nutritional therapy, alternative off-label uses of approved medications and other therapies that are being tested in studies right now for cancer, but not yet 'approved' for breast cancer.
I don't believe I am allowed to mention what those therapies are on this board, but there are many woman like me using them with excellent results. Luckily, I too, am doing well and have had no further reoccurrence of any cancer (knock on wood). In May of 2024 it will be 6 years since my diagnosis. I hope to have many more years ahead of me! I hope that answers your questions. Let me know if you have any others. Good Luck!
-
Like -
Helpful -
Hug
4 ReactionsHello. I am currently in the process of reconstruction. The expanders are now being filled with saline solution weekly. I am 1 week out from the first injection. It is a process. So, 1st be willing to endure the process. I had the expanders inserted the same day at the mastectomy.
It is uncomfortable and some may say painful. However, I am able to do most activities and just take Tylenol when I need relief.
My surgeon and oncologist initially recommended against reconstruction IF it was determined I needed radiation. However, I did not have to receive radiation treatments.
-
Like -
Helpful -
Hug
2 ReactionsLove your story, it is very similar to mine. It is good to know that I am not alone in making an informed decision that fits your individualized needs. Research and being informed is key!
I too am on the journey to nutritional and alternative therapies. Diet and environmental factors are key contributors to cancer and other health issues. Making adjustments towards eating healthier foods and including exercise is so important. My oncologist said the key to healing from a double mastectomy was to start eating healthy and getting exercise prior to the surgery. I had gained advice of a nutritionist the day I found out about my diagnosis. I changed my diet and added exercise and I do contribute this to my being back at work (from home) within one week after a double mastectomy! I have never felt so good post-op, as with other surgeries, my healing and recovery times were very slow and painful.
-
Like -
Helpful -
Hug
3 ReactionsThank you for sharing your path. I'm so sorry you had to go through that. I too had to have double mastectomy with immediate reconstruction afterwards. 7.5 hours of surgery, 2 days in hospital & 8 weeks on the couch. Ugh. I wasn't informed about therapy after surgery for stretching or anything. I wanted to sleep in my bed but couldn't lay flat. I never thought to use a pillow wedge! Great tip!
Ice packs & pain meds were my friends for months. 4 drain tubes ugh, don't miss that at all.
Its been 2 years for me after surgery & I continue to see an Occupational therapist that I was suggested to see a year after surgery. She's helped me a great deal with lymphedema in arms, hands, chest & back. I see her weekly & SO very thankful to have her help me.
So much information is NOT shared with patients before or after surgery on what to expect. And especially on medicine if needed afterwards. I've got the CHCK2+ gene mutation so I've had multiple cancers already all within 2 years. Breast, thyroid & skin. And being estrogen/progesterone+, I'm not a candidate for hormone replacement therapy unfortunately!
So my Dr tells me I'm just going to have to "Tuff it out" when the time comes for menopause. I'm premenopausal now & praying I don't need a hysterectomy yet.
I wish I knew something to take for night sweats, brain fog & mood swings. I'm sure my husband would appreciate it lol.
Anyway, thank you again for your story.
God bless...
-
Like -
Helpful -
Hug
2 ReactionsI am sorry you are having to deal with those expanders. But, it sounds like you have the right attitude! It is true about the radiation potentially ruining your new breast implants, though...
Here is how I learned about that: As I had mentioned previously, the genomics test revealed that radiation would be of no benefit in my case. Even so, the Oncology team set me up with an appointment with the Radiation Doc (post surgery) who offered the option of radiation if I still wanted to do it.
She discussed how she would have to direct the beam at my one affected breast from 3 different angles in each session, a total of 15 minutes x 5 days per week x 6 weeks (if I remember correctly).
After she was done explaining the process, I said, "Well now, let's talk about the potential side effects."
That's when I learned that radiation could:
- fry my vocal chords, which may permanently alter the sound of my voice,
- possibly injure/destroy my thyroid gland, (I am already hypothyroid),
- likely leave a scar on my lung which would be visible on x-rays forever after,
- could burn my skin on that breast,
- and something I didn't know about and that was that it would/could destroy my newly installed breast implant which would then have to be surgically removed and replaced afterwards!
Can you imagine! So I told the Doctor, "Hmm. I believe I will decline that option." She nodded in agreement. And, so far, so good!
-
Like -
Helpful -
Hug
1 ReactionOh...yes, I was forewarned about the side effects of radiation. I was sent to a chemo oncologist and radiation oncologist. Fortunately, the team of doctors determined radiation was not acceptable as a form of treatment in my case, only chemo. Thanks for your response, I have received some very positive and informative information in this thread.
-
Like -
Helpful -
Hug
2 Reactions