Dis Breast Cancer Survivors Part IV - GAGWTA

[snappy]

Ann, were you the one who coined GAGWTA (greetings and good wishes to all)?

 

[Feralpeg]

Ann! So nice to see you again! Sorry to hear about your husband's illness. Life is crazy! So many ups and downs. Thankfully, there is a place like this to share those challenges and revel in the highs! Hope you'll stick around!

 

[tazdev3225]

Hi everyone. I haven't posted in several years but you were all so helpful when my dad was diagnosed 5 years ago that I thought I would give an update. Dad is still here at 84 and my parents celebrated 65 years of marriage this month. There have been some notable changes in him cognitively since the grueling surgery to get the cancer. I sort of expected it but for a man who was so on the ball to forget things so easily it can be hard to watch. I am worried that he has cancer again even though my parents are being quiet about much of it. He has had repeated CT scans and MRI's for the past few months. Lots of stomach issues and not being able to eat. He has lost a ton of weight, he's almost as skinny as he was when my parents met as teens. I know there is a chance he has cancer again but I am not worrying about it. I am glad he is still here and cherish each day knowing how lucky I am to still have my dad.

Thank you again for being such a supportive group.

 

[Pea-n-Me]

Hi everyone. I haven't posted in several years but you were all so helpful when my dad was diagnosed 5 years ago that I thought I would give an update. Dad is still here at 84 and my parents celebrated 65 years of marriage this month. There have been some notable changes in him cognitively since the grueling surgery to get the cancer. I sort of expected it but for a man who was so on the ball to forget things so easily it can be hard to watch. I am worried that he has cancer again even though my parents are being quiet about much of it. He has had repeated CT scans and MRI's for the past few months. Lots of stomach issues and not being able to eat. He has lost a ton of weight, he's almost as skinny as he was when my parents met as teens. I know there is a chance he has cancer again but I am not worrying about it. I am glad he is still here and cherish each day knowing how lucky I am to still have my dad.

Thank you again for being such a supportive group.

Glad you still have quality time with him! Tell him we said hello! Thanks for posting.

 

[Dan Murphy]

GAGWTA! Something brought me to the DIS today, not sure what (had to change my password to get in because I couldn't remember it LOL). It's been a really long time since I've been here, and I wondered if the thread was still going. It's so wonderful to see old friends from when the thread first began 15 years ago... Laurie, Linda, Peg, and others. One of the great "gifts" of my diagnosis right after the original thread was started is the emotional and practical support I found here, and the resulting friendships and experiences. It is heartwarming to see it continue for so many others.

The last few years have brought highs and lows, as life does. I have an amazing grandson who just turned 4, he is the light of my life (via FaceTime mostly these days), they live 2 1/2 hours away, sadly. My DH was diagnosed with a degenerative neuro-cognitive condition (he still refuses to use the "A" word), and although it is in the early stages, it's been a bit consuming to adjust and prepare- in different ways for us both, of course. I've found a wonderful online support group of caregivers which is professionally facilitated/moderated, thankfully! And then Covid brings a damper on completing some bucket list things involving travel while we still can, while decreasing motivation (and resistance on his part) to do the things we should while being at home- like purging years of clutter and storage, and reorganizing. Perhaps that's what drew me back here--the inspiration to carry on, stay positive, find the joy in the present moment and circumstances while connecting with other women. Women (and men like Dan Murphy who prove that we can be sad and vulnerable, yet find the joy with faith and resilience.

Hi, Ann. Great to see you again. As you said, it's been a long time. And 15 years for this thread and its predecessors, hard to imagine. And so true, so many good people here to provide, and obtain, support, information, friendships.

Congratulations on your grandson, now the ripe old age of 4, and to Megster for sure also. Those little ones can indeed be the light of our lives.

Sorry to hear about John's health condition. There is so much help, medical and otherwise, out there today. Blessings for him, for you. 's

As you said, Ann, carry on, stay positive, find joy in the present. Yes, we can be sad and vulnerable, yet find that joy through our respective faith and resilience.

Again, Ann, so nice to see you.

 

[NFLDERS]

Update from Oct. 6th^ pg 213

Sigh. I received an unexpected call from a cancer surgeon Friday last. There is scar tissue that they want me to make an appointment, and discuss removal of.

I'm leaning on NO, especially not right now in this Covid escalation period. It was concerning enough to get to this point. Any insight greatly appreciated... sigh.

 

[tazdev3225]

Glad you still have quality time with him! Tell him we said hello! Thanks for posting.

Thanks I saw him today. He is having a lot of gastric issues that they have not been able to figure out but my mom finally told me they don't think it is the cancer. I'm not sure I believe her but I'll take it for now.

We do a food bank at the church and when we got done today and were leaving my dad fell. He wasn't to steady on his feet but tried to convince my mom he could go grocery shopping. Thankfully mom put her foot down. He may have a broken wrist but with their insurance they have to call the doctor tomorrow and then get seen. An ER visit is very costly otherwise. Mom is keeping a close check on him as he is on coumadin so there is a risk of internal bleeding among other things. Dad will live to 100, the rest of us will die young worrying about him.

 

[Dan Murphy]

Hi everyone. I haven't posted in several years but you were all so helpful when my dad was diagnosed 5 years ago that I thought I would give an update. Dad is still here at 84 and my parents celebrated 65 years of marriage this month. There have been some notable changes in him cognitively since the grueling surgery to get the cancer. I sort of expected it but for a man who was so on the ball to forget things so easily it can be hard to watch. I am worried that he has cancer again even though my parents are being quiet about much of it. He has had repeated CT scans and MRI's for the past few months. Lots of stomach issues and not being able to eat. He has lost a ton of weight, he's almost as skinny as he was when my parents met as teens. I know there is a chance he has cancer again but I am not worrying about it. I am glad he is still here and cherish each day knowing how lucky I am to still have my dad.

Thank you again for being such a supportive group.

Thinking of you, tazdev. 's

 

[tazdev3225]

Thinking of you, tazdev. 's

Thank you Dan, much appreciated.

 

[Pea-n-Me]

Thanks I saw him today. He is having a lot of gastric issues that they have not been able to figure out but my mom finally told me they don't think it is the cancer. I'm not sure I believe her but I'll take it for now.

We do a food bank at the church and when we got done today and were leaving my dad fell. He wasn't to steady on his feet but tried to convince my mom he could go grocery shopping. Thankfully mom put her foot down. He may have a broken wrist but with their insurance they have to call the doctor tomorrow and then get seen. An ER visit is very costly otherwise. Mom is keeping a close check on him as he is on coumadin so there is a risk of internal bleeding among other things. Dad will live to 100, the rest of us will die young worrying about him.

Aww. That is so hard! I hope his wrist is ok. I lost my mother this year after a lengthy decline - cancer that they initially thought was something she could live with long term. Then on the same week last year she fractured her hip and we learned her cancer had spread. It was hard for her because, even well into her 90s, she still had her faculties and wasn’t ready to go. She put up a good fight, and we were fortunate to care for her at home till the end. Thank God for my daughter, who is also a nurse now, but my son and husband were incredibly helpful, too. DD and I did most of the daily care, though (and I am still recovering from the exhaustion that came with that). Some days I still can’t believe she is gone. I miss her a lot. Our birthdays fell one day apart and those were hard this year, as will be the holidays. She did give me a nice “gift”, though, around that time in two way of an image in a throwaway picture. I think she had come to accept where she was going at the end because she became quite happy and was saying what only she was seeing was “fantastic and beautiful”. She was also talking to others by name, including her sisters, so I was grateful for that, and believe she made it to that beautiful place. I hadn’t shared that story here yet, so thanks for the segway. Overall, though tough, I’m happy with how things went. I hope things continue to go pretty well for your Dad.

 

[snappy]

Hi everyone. I haven't posted in several years but you were all so helpful when my dad was diagnosed 5 years ago that I thought I would give an update. Dad is still here at 84 and my parents celebrated 65 years of marriage this month. There have been some notable changes in him cognitively since the grueling surgery to get the cancer. I sort of expected it but for a man who was so on the ball to forget things so easily it can be hard to watch. I am worried that he has cancer again even though my parents are being quiet about much of it. He has had repeated CT scans and MRI's for the past few months. Lots of stomach issues and not being able to eat. He has lost a ton of weight, he's almost as skinny as he was when my parents met as teens. I know there is a chance he has cancer again but I am not worrying about it. I am glad he is still here and cherish each day knowing how lucky I am to still have my dad.

Thank you again for being such a supportive group.

I think your frame of mind about appreciating each day is lovely. About the cognitive changes you mentioned, my mom had 3 surgeries from 2014-2018 during her 80’s. We noticed a big decline, and her internist told me she sees this often in her elderly patients. She had slipped too after a UTI. But she is 90 now. She is in an assisted living unit now. We are limited to seeing her to once a week but is fairly happy and engaged with the daily activities. It’s a safe place at the moment.

 

[snappy]

Update from Oct. 6th^ pg 213

Sigh. I received an unexpected call from a cancer surgeon Friday last. There is scar tissue that they want me to make an appointment, and discuss removal of.

I'm leaning on NO, especially not right now in this Covid escalation period. It was concerning enough to get to this point. Any insight greatly appreciated... sigh.

Sorry you have to face more surgery. No real insight here but I think I would ask the surgeon what the risk is of delaying the scar tissue until 2021, since your biopsy was benign. Good luck and please come back and let us know what you decide to do.

 

[Pea-n-Me]

@MelissaE1 How are you doing? Thinking of you!

 

[tazdev3225]

Aww. That is so hard! I hope his wrist is ok. I lost my mother this year after a lengthy decline - cancer that they initially thought was something she could live with long term. Then on the same week last year she fractured her hip and we learned her cancer had spread. It was hard for her because, even well into her 90s, she still had her faculties and wasn’t ready to go. She put up a good fight, and we were fortunate to care for her at home till the end. Thank God for my daughter, who is also a nurse now, but my son and husband were incredibly helpful, too. DD and I did most of the daily care, though (and I am still recovering from the exhaustion that came with that). Some days I still can’t believe she is gone. I miss her a lot. Our birthdays fell one day apart and those were hard this year, as will be the holidays. She did give me a nice “gift”, though, around that time in two way of an image in a throwaway picture. I think she had come to accept where she was going at the end because she became quite happy and was saying what only she was seeing was “fantastic and beautiful”. She was also talking to others by name, including her sisters, so I was grateful for that, and believe she made it to that beautiful place. I hadn’t shared that story here yet, so thanks for the segway. Overall, though tough, I’m happy with how things went. I hope things continue to go pretty well for your Dad.

My dad is a tough guy and my parents accept whatever comes their way. He has cheated death a few times so he said he is ready to accept that when it comes. And our whole church adore my parents so a prayer chain was started in minutes. It helps that the priests wife was there when he fell and the message went out immediately.

A very dear friend found out she had stomach cancer in March and it was advanced. I never saw a person so accepting that she was terminal. She had a tremendous faith and it sustained her to the end. We were all able to say goodbye on a Zoom Call and she passed away 2 days later.

That is really wonderful that you had that time with your mom in the end. I am grateful that my daughter is also a nurse. SHe got me through some very rough times 3 years ago with my husband's strokes and his care and is always there to help us navigate the medical issues. Years ago my mom and I took care of elderly sisters, who were very dear friends and we adopted them as family, and I think my mom has finally recovered. Seriously I know how difficult it is mentally and physically. But you gave your mom a peaceful place to stay and were with her to the end. That is a gift.

I think your frame of mind about appreciating each day is lovely. About the cognitive changes you mentioned, my mom had 3 surgeries from 2014-2018 during her 80’s. We noticed a big decline, and her internist told me she sees this often in her elderly patients. She had slipped too after a UTI. But she is 90 now. She is in an assisted living unit now. We are limited to seeing her to once a week but is fairly happy and engaged with the daily activities. It’s a safe place at the moment.

Thank you. When dad first was diagnosed I was mad at the world. My dad is such a good man and I couldn't understand why he had the cancer. My parents helped me with it and they were so accepting of whatever came at them that it helped. Now I realize that at my age I am blessed to still have my dad and am thrilled for every day I have with him. The cognitive changes are hard but we try and find humor in them. We love to remind him how he got lost trying to find the airport and made my mom stand in 100 degree heat for an hour dressed in jeans and hoodies. We had just returned home from Scotland where it was much cooler. Of course I add that mom took over the driving and took me home by way of the river. She was so flustered that we went the wrong way. We did stop dad from driving though and are thankful he didn't have an accident.

My mom went on vacation to Ireland with my brother's family in 2019. Dad called me everyday for the "formulas" to run the washer, the dishwasher, and other goofy things. Mom left him detailed instructions As I said humor helps.

 

[Pea-n-Me]

Update from Oct. 6th^ pg 213

Sigh. I received an unexpected call from a cancer surgeon Friday last. There is scar tissue that they want me to make an appointment, and discuss removal of.

I'm leaning on NO, especially not right now in this Covid escalation period. It was concerning enough to get to this point. Any insight greatly appreciated... sigh.

I’m glad @snappy responded to this as I had missed it. So is the thought that they are concerned they may have missed something in that area during the biopsy and they want to be on the safe side and take it all out? I think I would want to make an appt - even a video appt - to discuss that more with the surgeon to make sure I understand it fully, and the concern they have. One thing I’ve learned in this journey is that you never want to have regrets down the road. I work in a hospital, as you might know, and it’s not as bad as people imagine with Covid. Patients are tested repeatedly and there are measures in place for staff to report any issues they might be having before every shift they work. Masks and goggles or shields are in place, and hand hygiene, etc.. Every hospital might be different but many, including mine, have Covid patients isolated from the rest of the hospital population. There are strict procedures for outpatients, as well. Point being, if I thought I needed that procedure to avoid breast cancer (and that’s a big “if”) I wouldn’t let the issue of Covid stop me from having it done. My $.02 anyway, I know everyone is different.

 

[Feralpeg]

Update from Oct. 6th^ pg 213

Sigh. I received an unexpected call from a cancer surgeon Friday last. There is scar tissue that they want me to make an appointment, and discuss removal of.

I'm leaning on NO, especially not right now in this Covid escalation period. It was concerning enough to get to this point. Any insight greatly appreciated... sigh.

I am looking at this with a different perspective. About 25 years after my original mastectomy, I noticed the scar area changing. It became thick and itchy. I saw my regular GP and my GYN about it. My original surgeon had passed away years prior. Both doctors told me not to worry about it.

It continued to get larger. It was very hard and thick. The itching drove me nuts. I went back to my GP and was told I had a fungus. He gave me a cream. So, I ignored it. In the back of my mind, I had this nagging feeling that something wasn't right, but it was easier to let it go. Five years went by. It continued to grow along the length of the scar. Finally, I was desperate to do something to stop the constant itch. I asked for a referral to a surgeon. My GP was reluctant. He told me it was unnecessary, but gave me the referral.

l saw the surgeon. He took one look at the area and said he was doing a biopsy on the spot. My original cancer had returned in the scar.

So, 30 years after my original surgery, I had a left chest wall resection, followed by 16 rounds of chemo and 32 rounds of radiation. Not fun, but I figured I'd beat it. Not so.

Five years later, my tumor markers were on the rise. A PET scan showed it had moved to lymph nodes in my neck and chest. I am now stage 4. I am taking Ibrance and getting shots monthly of a hormone inhibitor.

Regrets? Yes. If I had only been more aggressive in seeking an answer when I saw the scar changing, I might be in a better place now. Unfortunately, not all doctors are equal. My GP felt bad when I explained the situation to him. He said he'd never heard of cancer returning in a scar. Now, he knows.

My point being, I know you don't want another surgery. I know this is a pain, but a little inconvenience now might save you a lot of pain and grief later.

 

[Pea-n-Me]

I am looking at this with a different perspective. About 25 years after my original mastectomy, I noticed the scar area changing. It became thick and itchy. I saw my regular GP and my GYN about it. My original surgeon had passed away years prior. Both doctors told me not to worry about it.

It continued to get larger. It was very hard and thick. The itching drove me nuts. I went back to my GP and was told I had a fungus. He gave me a cream. So, five years went by. It continues to grow along the length of the scar. Finally, I was desperate to do something to stop the constant itch. I asked for a referal to a surgeon. My GP was reluctant. He told me it was unnecessary, but gave me the referra

l saw the surgeon. He took one look at the area and said he was doing a biopsy on the spot. My original cancer had returned in the scar.

So, 30 years after my original surgery, I had a left chest wall resection, followed by 16 rounds of chemo and 32 rounds of radiation. Not fun, but I figured I'd beat it. Not so.

Five years later, my tumor markers were on the rise. A PET scan showed it had moved to lymph nodes in my neck and chest. I am now stage 4. I am taking Ibrance and getting shots monthly of a hormone inhibitor.

Regrets? Yes. If I had only been more aggressive in seeking an answer when I saw the scar changing, I might be in a better place now. Unfortunately, not all doctors are equal. My GP felt bad when I explained the situation to him. He said he'd never heard of cancer returning in a scar. Now, he knows.

My point being, I know you don't want another surgery. I know this is a pain, but a little pain now might save you a lot of pain and grief later.

I gave that a love because you are so right! The thing about breast tissue is that I doesn’t end at the breast. It goes up to the neck and down under the arm, so you absolutely can get a recurrence of breast cancer in tissue even after a mastectomy! As you well know! I am so glad they are able to offer you ongoing treatment.

I don’t believe @NFLDERS ever had breast cancer. She had a lump and a negative biopsy. The surgeon wants to take out the whole area - my guess being to make sure nothing was missed If it was just a needle biopsy. I hope she doesn’t miss the opportunity because of fears about Covid.

Your story is hear wrenching, Peg. You are one strong lady!

 

[NFLDERS]

I am looking at this with a different perspective. About 25 years after my original mastectomy, I noticed the scar area changing. It became thick and itchy. I saw my regular GP and my GYN about it. My original surgeon had passed away years prior. Both doctors told me not to worry about it.

It continued to get larger. It was very hard and thick. The itching drove me nuts. I went back to my GP and was told I had a fungus. He gave me a cream. So, I ignored it. In the back of my mind, I had this nagging feeling that something wasn't right, but it was easier to let it go. Five years went by. It continued to grow along the length of the scar. Finally, I was desperate to do something to stop the constant itch. I asked for a referral to a surgeon. My GP was reluctant. He told me it was unnecessary, but gave me the referral.

l saw the surgeon. He took one look at the area and said he was doing a biopsy on the spot. My original cancer had returned in the scar.

So, 30 years after my original surgery, I had a left chest wall resection, followed by 16 rounds of chemo and 32 rounds of radiation. Not fun, but I figured I'd beat it. Not so.

Five years later, my tumor markers were on the rise. A PET scan showed it had moved to lymph nodes in my neck and chest. I am now stage 4. I am taking Ibrance and getting shots monthly of a hormone inhibitor.

Regrets? Yes. If I had only been more aggressive in seeking an answer when I saw the scar changing, I might be in a better place now. Unfortunately, not all doctors are equal. My GP felt bad when I explained the situation to him. He said he'd never heard of cancer returning in a scar. Now, he knows.

My point being, I know you don't want another surgery. I know this is a pain, but a little inconvenience now might save you a lot of pain and grief later.

OK, here I go if I forget anyone forgive me. Greatly appreciate each one of your replies. I've quoted you Feralpeg because you spoke mostly to me. I've been using a fungal cream under both breasts for probably a year now. Recognized your itching descriptive. This is where I'm a tad different. Itching subsided before breast discharge started. Discharge stopped before the mammogram, ultra sound, and biopsy. I've always had dense breast tissue, but had never had an ultra sound. The biopsy was benign. I've never had cancer. I'm a 70 yr old senior.

My decision to my GP today whom is Telecalling me because my response to the cancer surgeon at best was terse, is that as a pp suggested I will follow up but only after Covid19 numbers improve again. My BP always elevates because I'm a white coat reactor. During this Covid time I've had 5 appointments, everything from my knees xrayed and ulrasounded to Cataract and Cannabis Oil assessment.

Before Covid shutdown but not before the scare started I'd met 3 other appointments Dental and Opthamologist. Telehealth calls regarding all of these listed about 6 thus far. I'm medically exhausted...

So... I leave off by saying thanks to you guys, and offer my $05. because we don't use pennies any longer. Stay well and Stay safe.

 

[Pea-n-Me]

OK, here I go if I forget anyone forgive me. Greatly appreciate each one of your replies. I've quoted you Feralpeg because you spoke mostly to me. I've been using a fungal cream under both breasts for probably a year now. Recognized your itching descriptive. This is where I'm a tad different. Itching subsided before breast discharge started. Discharge stopped before the mammogram, ultra sound, and biopsy. I've always had dense breast tissue, but had never had an ultra sound. The biopsy was benign. I've never had cancer. I'm a 70 yr old senior.

My decision to my GP today whom is Telecalling me because my response to the cancer surgeon at best was terse., is that as a pp suggested I will follow up but only after Covid19 numbers improve again. My BP always elevates because I'm a white coat reactor. During this Covid time I've had 5 appointments, everything from my knees exrayed and ulrasounded to Cataract and Cannabis Oil assessment.

Before Covid shutdown but not before the scare started I'd met 3 other appointments Dental and Opthamologist. Telehealth calls regarding all of these listed about 6 thus far. I'm medically exhausted...

So... I leave off by saying thanks to you guys, and offer my $05. because we don't use pennies any longer. Stay well and Stay safe.

I understand medically exhausted. Truly. But here is my advice as a seasoned nurse and breast cancer survivor. It doesn’t matter that the breast surgeon is terse. They are the experts in breast cancer. Not the PCP, or gynecologist, or any other doctor, really, other than maybe the oncologist who works with the breast cancer surgeon. It’s the surgeon who understands all things breast tissue-related, in other words. And I am a big advocate of PCPs, believe me, but not in this instance. You need to communicate somehow with the breast surgeon to find out WHY he wants this area taken out. If you don’t want to do it, ask your PCP to have that conversation with him and then relay it to you. This is very important to your breast health. I’m guessing it’s a small possibility since the biopsy was negative, but even so, if there’s anything there, it can grow and invade nearby tissues over the time that you’re waiting. This is one of those times that we need to act aggressively at the beginning. Of course, with all that said, it’s totally up to you! Maybe give yourself a week or two to think about it some more, but somehow talk to the surgeon in the meantime to figure out what his rationale is for this recommendation. Good luck!

 

[snappy]

I agree with Pea-n-me. As I said above, I would be talking to the surgeon about the risk of waiting. I always liked to ask for what my surgeon’s nurse called a face to face when I had questions for which I needed real answers.