Dis Breast Cancer Survivors Part IV - GAGWTA

[rajak73]

Update on the DW, lymph nodes were clear, so no need to worry about chemo. Pathologist wouldn't 100% clear the tissue because they couldn't tell if for 100% sure any cells were far enough from margin so she has to go back for a minor surgery this Thursday to take a little more tissue. They will do radiation but not aggressive radiation. Had a great oncologist last week, I asked about the mammogram, he said that the spot was so small that this may have been the first time they would have showed up on the mammogram anyway. I still feel blessed!

 

[Feralpeg]

So happy to hear the good news, Smiley! Unfortunately, we have to remain vigilant. My cancer came back after 30 years. The oncologist is sure that it was the original cancer that had gone dormant. We stay vigilant, but we don't dwell!

 

[robinb]

I saw my oncologist yesterday and he declared me "cured of cancer"!! it has been 6 years since my diagnosis, 5 years since the end of my treatment. it's the 5 year cancerversary they use to declare you cured Like my dr said, maybe I will never face this disease again, but given my family history, and the fact that it did hit me, I need to be more aware going forward. I have 1 sister who died from her cancer, and my other sister has had 3 different primary cancers, and is doing really well now. lot's of other history too, so something must be running in our genetics! Anyway, I am glad it was caught so early and is curable! mine was at stage 2b and the treatment was really hard, but here I am, apparently cured!

Awesome news! I have a couple years yet before I can say the same.

Update on the DW, lymph nodes were clear, so no need to worry about chemo. Pathologist wouldn't 100% clear the tissue because they couldn't tell if for 100% sure any cells were far enough from margin so she has to go back for a minor surgery this Thursday to take a little more tissue. They will do radiation but not aggressive radiation. Had a great oncologist last week, I asked about the mammogram, he said that the spot was so small that this may have been the first time they would have showed up on the mammogram anyway. I still feel blessed!

Good luck with the follow-up surgery! I had the same thing happen to me. I was also Stage 0 and the margins were too close and I had to go in for a second surgery. Since I did not have any of my lymph nodes removed (my doctor did not think it was necessary), it was basically the same surgery twice. I also had radiation treatments because of those close margins and I am now taking anastrozole (which is like tamoxifen).

 

[rajak73]

Good luck with the follow-up surgery! I had the same thing happen to me. I was also Stage 0 and the margins were too close and I had to go in for a second surgery. Since I did not have any of my lymph nodes removed (my doctor did not think it was necessary), it was basically the same surgery twice. I also had radiation treatments because of those close margins and I am now taking anastrozole (which is like tamoxifen).

Said she should only be out about 20 min. this time. They took a couple of lymph nodes, (put in some radioactive dye so they knew just exactly which one they wanted to take) DW will have radiation (not aggressive) and then probably the pill too.

 

[leebee]

Update on my sister... she is still taking Cipro and her leg looks like a giant port-wine birthmark, she says, but most of the weeping has stopped. She says she has a low level of lymphedema in that leg all the time, from her prior surgery, and the cat nick just set everything off, starting with wide-spread cellulitis setting in within hours. SO... she knew all about lymphedema. Silly me, of COURSE she did!

 

[smiley_face2]

So happy to hear the good news, Smiley! Unfortunately, we have to remain vigilant. My cancer came back after 30 years. The oncologist is sure that it was the original cancer that had gone dormant. We stay vigilant, but we don't dwell!

Was yours triple negative too? I ask because that's what mine was, the most aggresive type of breast cancer, and mine did in fact come back immediately after ending chemo. in fact it seems it started coming back after the first type of chemo was over, the one that was so hard on me I had to stop and take a break at one point. they think it may have been cells left over from margins that were too close after the first surgery, but they are not sure. At any rate, with this cancer the odds are much higher that it will come back, but because it is so aggressive, it will show up in the first 3 years, and after that time, is much less likely than other types to come back at all. they keep finding out new things all the time, and like pea and me said, decades ago, a lot of us would not even have lived, so yes what you say is true, be vigilant but don't dwell!! and never stop fighting!

 

[lovethattink]

Hi everyone! New to posting on this part of the board. I'm in the waiting phase at the moment. Waiting for Oncotype DX results. I'm so clueless about breast cancer and treatment. My biopsy, Aug 15, showed non-invasive cells. But the pathology from the lumpectomy, Aug 30, for DCIS shows invasive cancer. The surgeon said this was the first time in 2 years she's seen the pathology report from surgery come back different from the biopsy.

 

[Pea-n-Me]

Hi everyone! New to posting on this part of the board. I'm in the waiting phase at the moment. Waiting for Oncotype DX results. I'm so clueless about breast cancer and treatment. My biopsy, Aug 15, showed non-invasive cells. But the pathology from the lumpectomy, Aug 30, for DCIS shows invasive cancer. The surgeon said this was the first time in 2 years she's seen the pathology report from surgery come back different from the biopsy.

Welcome, glad you found us. These are some of the hardest days with the wait. Once you get all the results in and a plan in place, it should get easier. We're here any time you want to talk, vent, whatever.

 

[Pea-n-Me]

Was yours triple negative too? I ask because that's what mine was, the most aggresive type of breast cancer, and mine did in fact come back immediately after ending chemo. in fact it seems it started coming back after the first type of chemo was over, the one that was so hard on me I had to stop and take a break at one point. they think it may have been cells left over from margins that were too close after the first surgery, but they are not sure. At any rate, with this cancer the odds are much higher that it will come back, but because it is so aggressive, it will show up in the first 3 years, and after that time, is much less likely than other types to come back at all. they keep finding out new things all the time, and like pea and me said, decades ago, a lot of us would not even have lived, so yes what you say is true, be vigilant but don't dwell!! and never stop fighting!

Mine was triple negative, too. I was one of the lucky ones that didn't have a recurrence, knock on wood. Staff in the OR on the day of my surgery were making fun of my doctor because she was so slow and meticulous. I was actually the last one left in pre-OP holding, left there alone long after the second to last patient had left. Told my doctor was "running behind, as usual". It happened with my radiation oncologist, too - very slow and meticulous, staff rolling their eyes when she wanted to take extra time, etc. I told them "Hey, if it were you on this table, you'd want your doctor to be meticulous, too". They agreed. We'll never know if it was or wasn't the margins or whatever, but I don't think it's a bad idea to find a doctor/surgeon/radiation oncologist who has a reputation for being slow and meticulous, lol. I actually didn't plan it that way, but that's how it worked out. (And not saying yours wasn't, as even with the most meticulous doctors it's not always easy when you're dealing with millimeters of tissue; it's probably never perfect.)

 

[smiley_face2]

Hi everyone! New to posting on this part of the board. I'm in the waiting phase at the moment. Waiting for Oncotype DX results. I'm so clueless about breast cancer and treatment. My biopsy, Aug 15, showed non-invasive cells. But the pathology from the lumpectomy, Aug 30, for DCIS shows invasive cancer. The surgeon said this was the first time in 2 years she's seen the pathology report from surgery come back different from the biopsy.

Hi there! I agree with peanme, the waiting and wondering and not knowing is so very hard! The best thing I have found is trying to get busy doing something. My worst enemy was searching google for information, there is so much bad stuff you can end up reading and getting scared and losing sleep! my oncologist said "tell dr. google, to go away" lol It sounds like they must have caught it very early and that is good!

 

[smiley_face2]

Mine was triple negative, too. I was one of the lucky ones that didn't have a recurrence, knock on wood. Staff in the OR on the day of my surgery were making fun of my doctor because she was so slow and meticulous. I was actually the last one left in pre-OP holding, left there alone long after the second to last patient had left. Told my doctor was "running behind, as usual". It happened with my radiation oncologist, too - very slow and meticulous, staff rolling their eyes when she wanted to take extra time, etc. I told them "Hey, if it were you on this table, you'd want your doctor to be meticulous, too". They agreed. We'll never know if it was or wasn't the margins or whatever, but I don't think it's a bad idea to find a doctor/surgeon/radiation oncologist who has a reputation for being slow and meticulous, lol. I actually didn't plan it that way, but that's how it worked out. (And not saying yours wasn't, as even with the most meticulous doctors it's not always easy when you're dealing with millimeters of tissue; it's probably never perfect.)

yes for sure!! my first surgeon, was in such a hurry when she saw me, I always felt I was taking up too much of her time. She has written a book and is somewhat famous, but left me with an extremely close margin, which is where the cancer did re occur so who knows. My next surgeon was much more thorough, has never made me feel I was taking up his time, and made sure the new margins were very generous! I have lucked out with my GP as well, after our old one left after having him for over 30 years, our new one is the same, in that she also never rushes. I agree, when I am sitting and waiting for my appointment and she is late, I know it's because she is taking her time with someone else!

 

[Pea-n-Me]

yes for sure!! my first surgeon, was in such a hurry when she saw me, I always felt I was taking up too much of her time. She has written a book and is somewhat famous, but left me with an extremely close margin, which is where the cancer did re occur so who knows. My next surgeon was much more thorough, has never made me feel I was taking up his time, and made sure the new margins were very generous! I have lucked out with my GP as well, after our old one left after having him for over 30 years, our new one is the same, in that she also never rushes. I agree, when I am sitting and waiting for my appointment and she is late, I know it's because she is taking her time with someone else!

Yes! And there are so many other factors involved, like where the tumor sits - mine was right in the middle so there was plenty of room to work. I've met people (I think we had some posters here) who had tumors right near the chest wall or ribs or something and then it's a little more difficult to get clean margins. They also say this is when it's better to be a little bigger chested, lol. FWIW, I think you've done terrific! You were dealing with so much during your treatment, and then to have a second go around. Ugh. I like the way you delved into doing your renovations and keeping busy with things that kept your spirits up, like a little bit of travel, and your grandchildren. You've been a really great example here of how we can get through things even when they seem that they can't get any worse. I know you and your husband have had some really tough days, but I also see the love that shines between you and him and the rest of your family, and that is truly admirable! You have a great spirit, Smiley!

 

[Feralpeg]

Was yours triple negative too? I ask because that's what mine was, the most aggresive type of breast cancer, and mine did in fact come back immediately after ending chemo. in fact it seems it started coming back after the first type of chemo was over, the one that was so hard on me I had to stop and take a break at one point. they think it may have been cells left over from margins that were too close after the first surgery, but they are not sure. At any rate, with this cancer the odds are much higher that it will come back, but because it is so aggressive, it will show up in the first 3 years, and after that time, is much less likely than other types to come back at all. they keep finding out new things all the time, and like pea and me said, decades ago, a lot of us would not even have lived, so yes what you say is true, be vigilant but don't dwell!! and never stop fighting!

No. Mine wasn't. In fact, it wasn't a very aggressive cancer. The first time, I went for almost two years after finding the lump before they decided it needed to be removed. This last time, I noticed a change in the scar a good three years or more before they figured out it was cancer. By that time, it had grown to be about five inches in length and about an inch thick along the line of the scar. The doctors kept telling me it was just scar tissue. If it hadn't itched so bad, I probably would not have approached the surgeon who figured it all out. I just wanted him to do something to stop the itching.

Lucky for me it wasn't aggressive since it took so long to figure things out.

 

[smiley_face2]

Yes! And there are so many other factors involved, like where the tumor sits - mine was right in the middle so there was plenty of room to work. I've met people (I think we had some posters here) who had tumors right near the chest wall or ribs or something and then it's a little more difficult to get clean margins. They also say this is when it's better to be a little bigger chested, lol. FWIW, I think you've done terrific! You were dealing with so much during your treatment, and then to have a second go around. Ugh. I like the way you delved into doing your renovations and keeping busy with things that kept your spirits up, like a little bit of travel, and your grandchildren. You've been a really great example here of how we can get through things even when they seem that they can't get any worse. I know you and your husband have had some really tough days, but I also see the love that shines between you and him and the rest of your family, and that is truly admirable! You have a great spirit, Smiley!

aw, thankyou! I have my grandmothers disposition! she came to north america as an immigrant (well actually my grandparents on both sides did, from the Ukraine, at the beginning of the last century!) they had to (all) work so hard for everything. I vividly remember my Baba, we would travel in the summer to the city of Vancouver to stay and go to the Pacific National Exhibition; We were catching the city bus to get to the fair and my baba was behind another older woman who was having a hard time getting up the steps of the bus, well baba boosted her up and said "come on lets go!" LOL!! she passed away from cancer but she lived a long life. My other baba, as a new young immigrant, on a farm in Saskatchewan, they had 6 children, my mom was the youngest at 4 years old when her husband died. She stayed on the farm and raised the kids, and made a life, until her oldest son was killed in a farm accident when he was the same age as our son, 28. She also died a very old woman. She eventually married again, and both baba's had moved to British Columbia by the time my mom and dad were in the young 20's, which is where they met, and a dance for the enlisted men, and fell in love and got married. My mom had her first child here alone while my dad was overseas in WWII, she never knew if he would be coming home or not. So carrying on in adversity, making the most of what life gives you even when it's hard, looking for the good, (my mom in law calls my Pollyanna ) that's just who I am! it's genetic! lol

 

[smiley_face2]

No. Mine wasn't. In fact, it wasn't a very aggressive cancer. The first time, I went for almost two years after finding the lump before they decided it needed to be removed. This last time, I noticed a change in the scar a good three years or more before they figured out it was cancer. By that time, it had grown to be about five inches in length and about an inch thick along the line of the scar. The doctors kept telling me it was just scar tissue. If it hadn't itched so bad, I probably would not have approached the surgeon who figured it all out. I just wanted him to do something to stop the itching.

Lucky for me it wasn't aggressive since it took so long to figure things out.

Wow! that's for sure!! I seem to recall you talking about the itching! that's where mine came back also, right at the very end of the scar, I thought it was just scar tissue growing, but it was very dark purplish coloured. That's good you were persistent! that's one thing they said last night in the Stand up to cancer telethon, you have to be your own best advocat! if you think something is wrong don't stop pushing for an answer!

 

[Pea-n-Me]

aw, thankyou! I have my grandmothers disposition! she came to north america as an immigrant (well actually my grandparents on both sides did, from the Ukraine, at the beginning of the last century!) they had to (all) work so hard for everything. I vividly remember my Baba, we would travel in the summer to the city of Vancouver to stay and go to the Pacific National Exhibition; We were catching the city bus to get to the fair and my baba was behind another older woman who was having a hard time getting up the steps of the bus, well baba boosted her up and said "come on lets go!" LOL!! she passed away from cancer but she lived a long life. My other baba, as a new young immigrant, on a farm in Saskatchewan, they had 6 children, my mom was the youngest at 4 years old when her husband died. She stayed on the farm and raised the kids, and made a life, until her oldest son was killed in a farm accident when he was the same age as our son, 28. She also died a very old woman. She eventually married again, and both baba's had moved to British Columbia by the time my mom and dad were in the young 20's, which is where they met, and a dance for the enlisted men, and fell in love and got married. My mom had her first child here alone while my dad was overseas in WWII, she never knew if he would be coming home or not. So carrying on in adversity, making the most of what life gives you even when it's hard, looking for the good, (my mom in law calls my Pollyanna ) that's just who I am! it's genetic! lol

My family is like that, too! "Strong as an ox" is the term we often use, lol. And did I ever mention my mother's mother was from Canada, also!

 

[smiley_face2]

My family is like that, too! "Strong as an ox" is the term we often use, lol. And did I ever mention my mother's mother was from Canada, also!

That is so neat! Do you know what part of Canada? We have recently discovered my husbands great grandfather came here from the US! he died when the kids were fairly young and the mom had some problems, so nothing much was known about them, and it seems no one before us, was very interested in documenting anything.

 

[robinb]

Update on my sister... she is still taking Cipro and her leg looks like a giant port-wine birthmark, she says, but most of the weeping has stopped. She says she has a low level of lymphedema in that leg all the time, from her prior surgery, and the cat nick just set everything off, starting with wide-spread cellulitis setting in within hours. SO... she knew all about lymphedema. Silly me, of COURSE she did!

It's terrible that a cat scratch could set all that off. I hope she'll felling better.

Hi everyone! New to posting on this part of the board. I'm in the waiting phase at the moment. Waiting for Oncotype DX results. I'm so clueless about breast cancer and treatment. My biopsy, Aug 15, showed non-invasive cells. But the pathology from the lumpectomy, Aug 30, for DCIS shows invasive cancer. The surgeon said this was the first time in 2 years she's seen the pathology report from surgery come back different from the biopsy.

{{hugs}}. The waiting really is the hardest part. Please keep us posted on your results.

 

[Pea-n-Me]

That is so neat! Do you know what part of Canada? We have recently discovered my husbands great grandfather came here from the US! he died when the kids were fairly young and the mom had some problems, so nothing much was known about them, and it seems no one before us, was very interested in documenting anything.

My maternal grandmother was from Nova Scotia. She spoke French fluently. A cousin on that side recently did a search on Ancestry.com, and he hooked up with another distant relation who had traced the roots all the way back to France, which I never realized went back that far (but it totally makes sense now). That grandmother was one of the strongest ladies, and had one of the most difficult lives, I've ever known. She lost her husband smack in the middle of the depression, leaving her to raise seven kids alone. When I think of how few modern conveniences they had back then, I'm amazed she managed to see them all through. She was as strong as an ox!

 

[maxaroni]

I'm sorry to hear this, Dan, but it's a good reminder that problems can re-surface years later. It sounds like you two are doing your best to keep us medical folks busy, lol! I'm glad things are going well despite all the issues you've had. Enjoy those grands!


Same with this, a good reminder!

I was moving a big picnic table with my "other" arm several years back now, and I got something in that arm that's never gone away, so I tend to use the arm I shouldn't use as much, more. I have to watch it. Ugh.

I think that there are a couple of things that patients have to take care of more themselves when they undergo the BC journey, at least with some providers, and that is emotional care, and, unfortunately, sometimes the lymphedema piece. I tended to get it in my arm (eight nodes removed, total, after first two were positive), when I vacationed. I think a combination of altitude and sodium in "vacation foods" did me in. So I only wore a sleeve then, on the plane, and tried to watch what I ate as much as possible. (Salty foods are a killer for edema as they tend to pull in and trap fluids in the tissues.) And I had to undergo one round of PT for lymph massage. But all of that I basically figured out myself, and I sought out care on my own for my emotional needs (during chemo and radiation, and afterward, when I felt like I didn't know what had hit me, or where it would all lead, and I was trying to deal with working and taking care of two little ones and my mother, etc.). I think if I had pressed the issues they could've helped me more, but I tended to just deal with them myself. I recognize that most people will look to their care teams for this, though, as they should. Not sure what everyone else has experienced these days.


I just got the all clear last fall, which was twelve years after my diagnosis. My doc finally said that the risks of my original cancer coming back were now very low, but that I was at the same risk now as the general population of getting another cancer. This was different than what I was originally told by my surgeon, who told me that in the cancer breast, that my rate of recurrence was 5% per year, cumulatively, so that if I lived 20 years, I had a 100% chance of it coming back. I've been bracing myself all these years. My oncologist scratched her head over that one, she said, no, it's likely gone now. So who knows. I think we all get mixed messages sometimes, and it's frustrating. (But I think they do the best they know how too, so I'm not going to fault them for it, just sharing. Medicine is as much an art as it is a science.)

I am frustrated that my insurance company is now charging me $100 for mammograms even though I'm going to the same place I've gone for years, which is now considered out of network. I was sent there originally by my first oncologist after a big problem elsewhere (that caused me to undergo the stress of two biopsies and being told I had a new cancer just after ending treatment, which was false) so that's what I"ve done and it's been good. I still have a seroma in my breast so reading my mamms is difficult. So I talked to my newer oncologist about and she said she saw no reason for me to go out of network and wouldn't write a letter on my behalf, other than to say I had a bad experience, not that they were necessary. So I dutifully paid the bill, and will have to decide this winter whether I'll continue to pay, or go elsewhere (same place as before that caused problem) where they'll be fully covered. I hate that we have to make these choices today. My main thing, obviously, is that I don't want them to miss anything. Nor do I want them to freak out again and start sending me for biopsies and what not. Anyone have advice or opinions? I'm tempted to just bite the bullet but with two in college, I can't keep doing that for everything.


Maybe I look at it from a different perspective being a nurse for thirty years. I've seen so many amazing advancements in that time. Years ago we might be dead, or completely disfigured and broken. So yes, we may have to deal with these types of problems that crop up, but we're fortunate we live in this day and age where we can be cured of this disease, even if we have to deal with some headaches along the way. I think we have to keep it in perspective. Not to say it's not difficult, but when you think of the alternatives, this is usually better. As I'm writing this I'm thinking of a young patient I took care of this summer who had been through a tremendous amount of complications with her treatment yet was looking for whatever else could be offered so she could continue to enjoy her family, friends, and a brand new grand baby. She was a real trouper, and would've done anything at all if it would help her live. Sadly, it wasn't to be for her. So when and if I get down about things, I think of people like her, and some we've known here who aren't with us anymore, and other patients I'm taking care of now who are fighting the fight of their lives, and it makes me feel very fortunate for what I've been given, even if it's not perfect.

Very good point. It's not perfect but the other side of coin isn't good and potentially deadly. We've come a long way in our fight against cancer. My mom wound up with many many health issues but she was a breast cancer survivor! She beat it twice.