Sparing mastectomy/Diep - What was your recommended follow-up?

Posted by sandyjr @sandyjr, Sep 14, 2020

I have just completed bilateral skin sparing mastectomy with diep reconstruction after having DCIS (2007) in one breast, IDC (2018) in the other breast and discovery or CHEK2 genetic mutation (2019). My breast surgeon is telling me that I will need follow up mamos and MRIs. If you have had this surgery and diep reconstruction, what have you been doing or what does your doctor advise you to do for follow up treatment? I was under the impression that these would not be needed.

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@sandyjr

I sent you a private message. Let me know if you get it.

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Hi – I’m in philadelphia and was wondering if you would share your surgeons name that did your mascetomy . Thank you

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They are needed. I only had a left mastectomy and I actually had 3d ultrasounds for
Years after then I got a lump
In my left armpit. I went to a different tech and they said it was nothing. That was in January. In July i went and had it done again at a different facility I have metastatic breast cancers with Mets to my liver, bones and lymph nodes. Always keep up on your follow up appointments. If you think something is wrong you are usually right. It’s your body advocate for it. It may be inconvenient to have to go and get checked all
The time but the alternative is a lot worse.

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@mglinkhart

They are needed. I only had a left mastectomy and I actually had 3d ultrasounds for
Years after then I got a lump
In my left armpit. I went to a different tech and they said it was nothing. That was in January. In July i went and had it done again at a different facility I have metastatic breast cancers with Mets to my liver, bones and lymph nodes. Always keep up on your follow up appointments. If you think something is wrong you are usually right. It’s your body advocate for it. It may be inconvenient to have to go and get checked all
The time but the alternative is a lot worse.

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@mglinkhart I am so sorry to hear your news. What you are sharing is so valuable …. Being our own advocate and listening to yourself. There are times I tire of always checking a new pain or issue out, but each of us is dealing with a cellular beast, and we have to keep fighting it off. Sometimes my primary doctor seems to give off, “what are you worried about now?” ……. But I have to follow through with unexplained issues, or simply those that do not resolve. I think it’s important we encourage each other to stay in this fight, and keep watch. This is not to be excessive (because it can be easy to cross that line), but it is to stay diligent. Praying for you this day. Stay strong.

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@rhongirl

@mglinkhart I am so sorry to hear your news. What you are sharing is so valuable …. Being our own advocate and listening to yourself. There are times I tire of always checking a new pain or issue out, but each of us is dealing with a cellular beast, and we have to keep fighting it off. Sometimes my primary doctor seems to give off, “what are you worried about now?” ……. But I have to follow through with unexplained issues, or simply those that do not resolve. I think it’s important we encourage each other to stay in this fight, and keep watch. This is not to be excessive (because it can be easy to cross that line), but it is to stay diligent. Praying for you this day. Stay strong.

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Thank you for your thoughtful message. My name is Maria Linkhart. I will be 72 in a week. I’m not sure if we are suppose to share this info or not but sometimes we need to be able to talk to someone who knows how you actually feel. Putting on the happy face 24/7 is so hard. only those of us that have to go through this and take all the poisons and pills that they push on us can understand not every day things change but almost hourly you could be walking across the room and your knee will give out and now you have a bad knee or your hand will start throbbing or you’ll break out in a rash that last for months. The side effects accumulatively can make you just wanna crawl in bed and not get out. I always feel like I’m complaining so I quit talking. Nobody wants to hear it. I don’t even want to hear it. I’m fortunate in finding a very good female oncologist where I get my medical care in Arizona and she accommodates me in every way and she’s very honest with me and telling me pros and cons and even when I asked her what my prognosis is she was honest I hope. Anyway thank you for your heartfelt comment it meant a lot to me. Sending prayers back to you. Maria

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@mglinkhart

Thank you for your thoughtful message. My name is Maria Linkhart. I will be 72 in a week. I’m not sure if we are suppose to share this info or not but sometimes we need to be able to talk to someone who knows how you actually feel. Putting on the happy face 24/7 is so hard. only those of us that have to go through this and take all the poisons and pills that they push on us can understand not every day things change but almost hourly you could be walking across the room and your knee will give out and now you have a bad knee or your hand will start throbbing or you’ll break out in a rash that last for months. The side effects accumulatively can make you just wanna crawl in bed and not get out. I always feel like I’m complaining so I quit talking. Nobody wants to hear it. I don’t even want to hear it. I’m fortunate in finding a very good female oncologist where I get my medical care in Arizona and she accommodates me in every way and she’s very honest with me and telling me pros and cons and even when I asked her what my prognosis is she was honest I hope. Anyway thank you for your heartfelt comment it meant a lot to me. Sending prayers back to you. Maria

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@mglinkhart What you are sharing in this message is very much what I have experienced. After a surgery this past July, I broke out in a terrible rash – like hives, so terribly itchy and painful. No one had answers. . . but after a month, it went away. Just one example of many, unfortunately, which is not unusual for those of us who have gone through or continue to go through cancer treatment. A good friend of mine who survived a rare Stage 4 cancer (now 20+ years later) told me she broke out for no reason for years – so this helped me not feel so different. Putting on a happy face 24/7 isn't realistic or humanly possible even without cancer. . . so I tell myself the truth, which is, it's okay not to be happy all the time. Sometimes we feel sadness, anxiety, excitement, joy, pain, fear, boredom, disappointment . . the list goes on. . . So when I think about how I lived before cancer, I still had days I felt emotions that were less than welcomed. . . . this is part of life. I think cancer just puts those feelings on the forefront of our minds, and exacerbates those emotions. There is no short supply of emotions during cancer and after. I've found I need to give myself the space to feel those emotions and let them run full-circle. I can't find healing at the end if I stop the process in the middle. I NEED the process to run its course, and I NEED to let myself heal emotionally. Crawling into bed is surely something we've all felt. . and maybe there's a day you need to do that – but then COME BACK OUT. :). I, too, have felt like I've been complaining. . . I think that's my mind's trick on me because it is not so much complaining, but PROCESSING what I have been and continue to go through. Be real. That can release some of the pressure. I surely do understand what you mean to say "I don't even want to hear it." It's tiring for us cancer patients, too (sigh). I found that when I gave myself a mental break from everything, my body (and spirit) rested a bit to make it through the next thing. Even if it's just a few moments (because we all know that cancer presses in on us, though we don't want it to). Sometimes, those moments can grow into minutes, and then hours. And then, if we can manage it, it can become days, weeks, or even longer. I've experienced seasons of both short and long breaks. The point being, we need mental breaks. And especially today, on Thanksgiving, we want to be thankful. . . . and yet, sometimes we struggle to find thankfulness in the midst of cancer. A thankful heart is surely good medicine for the soul and body – but be patient with yourself to find it. And you will. :). I lean heavily on Phillippians 4:8: "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy, think about such things." These words became my life verse after my 15-month old son was diagnosed with cancer. It kept me thinking of things that were praiseworthy, and kept the negativity and fear from being the loudest voice in my head. Today, that son is now sitting at my dining room table, 30 years later. :). We do our best in this life, and pray it can be a living testament to the love of our Lord. At least that's been my hope. Give yourself permission to feel those tougher emotions, and then let it circle 'round back to hope. Hugs to you on this Thanksgiving Day, Maria.

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@rhongirl

@mglinkhart What you are sharing in this message is very much what I have experienced. After a surgery this past July, I broke out in a terrible rash – like hives, so terribly itchy and painful. No one had answers. . . but after a month, it went away. Just one example of many, unfortunately, which is not unusual for those of us who have gone through or continue to go through cancer treatment. A good friend of mine who survived a rare Stage 4 cancer (now 20+ years later) told me she broke out for no reason for years – so this helped me not feel so different. Putting on a happy face 24/7 isn't realistic or humanly possible even without cancer. . . so I tell myself the truth, which is, it's okay not to be happy all the time. Sometimes we feel sadness, anxiety, excitement, joy, pain, fear, boredom, disappointment . . the list goes on. . . So when I think about how I lived before cancer, I still had days I felt emotions that were less than welcomed. . . . this is part of life. I think cancer just puts those feelings on the forefront of our minds, and exacerbates those emotions. There is no short supply of emotions during cancer and after. I've found I need to give myself the space to feel those emotions and let them run full-circle. I can't find healing at the end if I stop the process in the middle. I NEED the process to run its course, and I NEED to let myself heal emotionally. Crawling into bed is surely something we've all felt. . and maybe there's a day you need to do that – but then COME BACK OUT. :). I, too, have felt like I've been complaining. . . I think that's my mind's trick on me because it is not so much complaining, but PROCESSING what I have been and continue to go through. Be real. That can release some of the pressure. I surely do understand what you mean to say "I don't even want to hear it." It's tiring for us cancer patients, too (sigh). I found that when I gave myself a mental break from everything, my body (and spirit) rested a bit to make it through the next thing. Even if it's just a few moments (because we all know that cancer presses in on us, though we don't want it to). Sometimes, those moments can grow into minutes, and then hours. And then, if we can manage it, it can become days, weeks, or even longer. I've experienced seasons of both short and long breaks. The point being, we need mental breaks. And especially today, on Thanksgiving, we want to be thankful. . . . and yet, sometimes we struggle to find thankfulness in the midst of cancer. A thankful heart is surely good medicine for the soul and body – but be patient with yourself to find it. And you will. :). I lean heavily on Phillippians 4:8: "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy, think about such things." These words became my life verse after my 15-month old son was diagnosed with cancer. It kept me thinking of things that were praiseworthy, and kept the negativity and fear from being the loudest voice in my head. Today, that son is now sitting at my dining room table, 30 years later. :). We do our best in this life, and pray it can be a living testament to the love of our Lord. At least that's been my hope. Give yourself permission to feel those tougher emotions, and then let it circle 'round back to hope. Hugs to you on this Thanksgiving Day, Maria.

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Bless you and your beautiful family today and always. I love that verse and will lean heavily on it today and the future.
Happy Thanksgiving. M

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