Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

Yes that's what she wants to do. It's still confusing to me that she would say it is non-invasive and only in the duct when the margins are not clear. Couldn't biopsy of the next "chunk" removed show something more/different. DD (18) and I took a ride to Borders in my convertible this afternoon. Rather surreal on a nice spring day. I bought the Dr Love book and DD bought a book on Hidden Mickey's to prep for our trip at Xmas. She said "I want THIS book, it fits better in my little world of denial".

They can't completely stage you until they have the full picture. As long as your re-excision gets clear magins and they get all the cancer, and it's still DCIS, and no lymph node biopsy is needed, then you can have some assurance as to what to do next. For the moment, unless you're feeling strongly that, that's not all there is (been there done that!) I'd focus on the DCIS dx. My tumor was small .08 cm and shouldn't have even been found yet, should have been stage1 but it acted aggressive for such a little thing and I had 2 positive nodes. Not saying that to scare you, there's just more information that needs to be gathered first to confirm that's all you're dealing with.

 

[Cruise04]

After reading MerryPoppins post it sounds so much like what I found out about my mom after she died. If she would have had a mastectomy, her chances of getting all of the cancer would have been high. She also was on hormone replacement and had to stop cold turkey. God was that hell. She would call me on the phone just in tears to hear my voice, she would call me and be screaming because she was so mad, she would call me and just be fine. The rocky rollercoaster was awful!!!!!! She had a hysterectomy at 39. The one thing I have told my doctor is that I will NOT go on hormone replacement. I'll deal with the problems but I won't do it.

My mom also could not take Tamoxifin and I never found out why. I believe I have found out by those of you who can't. I do know she had a type of cancer that did something so she couldn't have it but I didn't know what. I'm so glad I've read this thread. Also first time around mom's largest tumor was 2 cm. They do look at that for some reason, I believe the larger the higher the chances are it's in the nodes. She had 3 out of 17 nodes with cancer in them the first time around. The second time around she had 3 tumors around her aorta and that was what killed her - those plus all of the small ones that had begun to build up around her heart veins - they had begun to close the veins shut which caused her heart to not work properly and that's why they thought she had a heart attack.

And Ann - what a great way to spend the afternoon with your daughter!!!!

 

[Dan Murphy]

's Ann Sorry to hear the results, but as said by others, if you are going to have it, that is a good way to have it. Sounds silly, but true. That in situ is good news too.

That Susan Love book is wonderful, a 'bible' indeed. So much good info there. You will be in my prayers, Ann, as are all you wonderful ladies here, and those not here but whom you represent.

Kkana, Jenny..'s Hoping all the tests go well, kkana, and Jenny, YOU are an inspiration, big time.

 

[laurabelle]

Jenny...my new siggie is for you!
~Blessings~
Laura

 

[JennyMominRI]

Jenny...my new siggie is for you!
~Blessings~
Laura

Thanks :*

 

[Pea-n-Me]

Welcome Cheryl and Jenny!

Ann, re: the question you had about the margins and how do you know they won't find invasive cancer on the spots they missed? My guess would be that by nature, invasive cancer is just that: invasive - it doesn't stay in one spot like non-invasive/"in situ" cancer does. So it would be unlikely that on a very small area they will find invasive cancer (though as my oncologist likes to say, "stranger things have happened" so I guess it would not be impossible, just unlikely). It most likely would have shown up in other areas too, probably throughout the tumor or in one large area. A pathologist can see it and your path report would have said there is evidence of "local invasion" of other tissues, etc... I have a friend who had both invasive and in situ and it was throughout the tumor, not just in one area. That would be my guess, anyway.

When I was deciding on what type of surgery to have - lumpectomy vs mastectomy - it was sobering to hear my doctors explain to me that the type of surgery I chose would not change my longterm survival rate; that that depended on whether I developed a distant metastasis secondary to my having invasive cancer (ductal carcinoma). I wanted to think that if I "took it all off" that I would be assured I'd be "fine" which is what many who've not experienced this believe, and even what the medical establishment thought years ago. Recent studies have shown pretty similar survival rates regardless of the type of surgery you have. Mastectomy gives a slightly lower rate of local recurrence of the cancer in the breast, (the difference being only 2.5% per year with mastectomy vs 5% with lumpectomy). However there are other implications with mastectomy to consider so it's really a difficult decision.

I decided to take the route of lumpectomy with very close follow up (including MRIs) so as to catch anything very early if there is a recurrence. I was sobered again recently during a discussion with my rad oncologist and she explained that a local recurrance can usually be dealt with fairly well (i.e it's not likely to kill me ) but a distant metastasis could be a different story (though there are lots of good treatments now depending on where it's metastasized to). {sigh} Because of the scare I had I was recently cosidering a bilateral mastectomy but in consultation with my team decided that close follow up will be the best route to take at this point. I sometimes wonder if I had it to do completely over again would I do things differently but then I think that most likely wouldn't. Truthfully, if I hadn't had that scare I probably wouldn't have thought much about it.

Cruise04, sounds like what your Mom had was a distant metastasis (even though it's "close" to the breast). An aunt in my husband's family died of the same thing after her bout with breast cancer. I don't think it's one of the more common places of spread but it seems it happens sometimes. So sorry.

Re: vacation: I was diagnosed 12 days before our first Disney cruise. It was out of the blue when I'd found a lump in late September. I didn't want to cancel because our twins would be celebrating their 6th birthday on the ship and they were very excited about it. I was in the midst of seeing surgeons still and all my doctors advised me to go so I did. We managed to have a good time but at times I was still in disbelief. On the cruise there was a terminally ill child from Make a Wish sitting next to us at breakfast one morning and after that I realized I was glad it was me and not one of my kids. That was a turning point for me. From there it was "let's just get on with it and do what it takes to fight this".

All year during treatment I dreamed of going on that cruise again, this time with a better spirit and outlook. One month after I finished I again boarded the Wonder with my family (and a wonderful group of Dis-ers ) and had a fantastic cruise. It's nice to have something to look forward to when you're going through treatment. I'm also looking forward our cruise next year on the Magic.

 

[NHAnn]

Good morning ladies (and Dan )...I managed to go to sleep at a decent hour but woke at 4 and couldn't get the brain turned off again

So I'm going to go to work today, and take some time to make some calls and do some more reading and thinking too.

laurabelle and Pea-n-me....thanks so much for your posts answering/elaborating on my questions about the margins...it really helped clarify some things in my mind!!

 

[laurabelle]

Ann,
You're really at one of the hardest parts of this process. Once you've made your treatment decision and you're actively fighting it, in alot of ways it gets easier. Right now, you don't know what's next...I understand. I kept a small notebook for my questions and info and I always took someone with me to appts to take notes for me, it was too hard to concentrate and take it all in when they're talking about you!

 

[MerryPoppins]

Pea-n-Me, we had taken a cruise on the Magic a few months before I was diagnosed. I remember looking forward to another cruise as well. We went again a year ago in celebration of our 20th anniversary and my continued health. You'll love the Magic.

I forgot to mention that I wore my Mickey Mouse watch in the time before my surgery. It helped me to remember all the DIS folk who were pulling for me. I also was given a gift of a breast cancer teddy bear. Now, I hate to admit it, but that teddy really helped me. I had her in my purse at each doctor's visit and she went with me to surgery. Guess at times in everyone's life we need some security, just like a child.

Ann, my surgeon explained to me that ductal breast cancer is very different from having a lump. They can see the lump in surgery and remove it. There is still the worry that cells have spread, but the surgeon can see what he is going after. It's possible that ductal breast cancer can spread through the ducts and yet not break out and spread through your body. The problem is that they can't actually see all the ducts in surgery like they can see a lump. So they take out the area where they left a marker and hope for clean margins. They can get out all the cells that they saw in the tests. The only way to get all the ducts is to take the breast. Of course, that is no guarantee that the cells won't have broken out of the ductal system.

I can relate to the sleep issues. I thought I'd never get to the point where I'd get a full night's sleep again, but I did. In the beginning, I'd sleep like I was exhausted for a few hours and then I'd be wide awake. The wheels turning in my mind. I felt very alone in the middle of the night when I couldn't sleep.

 

[snappy]

I also had sleep issues, must be pretty common in that period between diagnosis and the start of treatment. I asked for a prescription for something to help me sleep, the doc gave me Ambien. It is not supposed to be addictive. I had 20 pills, I have 13 1/2 pills left. There were some nights right after being diagnosed that I could not sleep without them. I found that although I went to sleep very quickly, that I only slept 6 hours and then woke up wide awake, even if it was 3 in the morning. After my surgery, I no longer needed help to sleep. Reading in bed after 8 pm puts me out like a light.

 

[laurabelle]

Ann, from my blog, about finding out I had bc from my surgeon who told me before surgery he was 95% sure I didn't have bc...but I knew he was wrong.

December 15, 1998 5:00p.m. hubby and I are driving to dr. god's office to get the results of the biopsy. I was going to drive down by myself, but mom insisted she could watch the girls so Danny could go with me. It has been over a week of waiting and phone calls, I call the office everyday, and no one will talk to me. My sil's dad (remember he's the head of pathology) doesn't call. I've always felt bad for him carrying around that burden and not being able tell anyone, but it was just more confirmation that the truth is, bad news is coming.

I'm still feeling very protected by God and his angels. I feel like I have a force field of love surrounding me. On the car ride, I turn on the radio and this song is playing, I just smile and cry...
Angel -Sarah McLachlan

When we see dr. god, I was expecting him to go straight to giving me the news, but no, he takes his time removing the stitches, an excruciatingly loooong time. Finally, he brings out the pathology report. He won't even look at me, he talks to Danny like I'm not even in the room. Maybe that's his way of coping, or maybe he hates to be wrong and can't face me - whatever, it sure doesn't help me any. There's a big stamp on the report that says ALERT MALIGNANT CASE and it goes on and on for pages. I read once that if your pathology report is more than a paragraph long, you're in trouble - no kidding. dr. god goes on adressing Danny instead of me, telling him in a way that makes me think of being told you're just a "little pregnant" that I indeed had breast cancer. But, it was teeny tiny, .08cm http://region4.tricare.osd.mil/breast_health/pathology.html#size and I was stage 1 so I wouldn't need chemo and I wouldn't lose my hair or my breast, I'd just have radiation, which would only make me a little tired and I'd be just fine and wouldn't die of it. Then he goes on to tell me that I just need one more surgery, because I still had dirty margins http://region4.tricare.osd.mil/breast_health/pathology.html#margins and to check my lymph nodes, but it's such a small tumor, there won't be cancer there, but we have to check anyway. I swear that's what he said, I know I can hear you survivors just shaking your heads. Yeah right. But it worked on hubby, hey who doesn't want to hear his wife has cancer but it's not that bad?

I have the presence of mind to ask for a copy of the report and he makes me an appointment to schedule the next surgery, and gives me the phone number of an oncologist.

We drive to mom and dad's house, me numb, Danny feeling pretty good about the whole thing. I just start crying and told him, "Don't you get it, he just told us I have cancer, and I know it's not going to be that simple." When we get to my parent's house, I just nod my head and they cry and hold me. My Dad cries and says I'm gonna beat this thing. My dad is an ex marine, he never cries so that really freaks me out. We don't stay long, and drive the kids home.

I asked Danny to make the phone calls, I'm not up to it, I didn't even want to listen in. The girls and I climb into my bed and watch Muppet Treasure Island. My mind is reeling, and I'm feeling really strongly that I don't want to see dr. god again. I don't want him to do another surgery on me. I cry and worry that I'm not going to be around to raise my kids, they're so little, they won't even remember me. They'll need a mom, but I don't want anyone else to be their mom but me. Danny needs a wife, but I don't want anyone else to be his wife but me. I haven't felt sick until now. I don't get any sleep that night. I'm in survival mode. If you don't die from the news that you have cancer, you're a survivor! I have to start my crash course tomorrow, Cancer 101. I have to prepare for battle, and my God and my family are my secret weapons.

 

[snappy]

Laurabelle, you are a very good writer. Did you keep a journal after you were diagnosed? I wish I had but things around the house seemed too hectic,
DS taking exams at end of first year in high school, DD 14 having her exams and graduation festivities at end of 8th grade, DD9's first communion.

All this happened during the 30 days before my surgery. But I am convinced it never comes at a good time.

I am glad your post mentioned getting copies of all pathology reports. I have a file with everything in it except the mammo films, I have the bone scans, chest xrays, catscans, path. reports, everything. I take it to all doctor's visits. If I have another set of test results, having the folder in my hand reminds me to be sure and ask for a copy for my file.

It is so wrong for the docs to predict outcomes as early as they did in your case. The pathology report after the lumpectomy or mastectomy gives much more information than the initial biopsy. A great deal hinges on the size of the tumor, whether there are positive nodes and the "grade" of the cancer.
The definitive answer can't be given with just the biopsy unless it is benign.
Maybe the doctor just wants to make everything ok but this is not what most patients need to hear. Especially the patients that do their homework beforehand.

 

[MinnieM3]

Whooo Hooooo got the clipart in my signature!! Now to go back and read 91 posts.... whew! Glad to see everyone here! Finished chemo and rads less than a year ago. Going for reconstruction June 7th. DIEP. More later!

 

[MinnieM3]

My mother survived breast cancer, my friend's mom died from breast cancer (M) and another friend's (B) grandma has aggressive breast cancer. It's just not the same though.

I'm very glad you both made it. I can't imagine life without my mom...I can't imagine how M is making it. It must have been hard. Give me a if I'm being Ms. Nosey Pants but did you guys do radiation or chemo?

Congrats!

TigerCheer I had a total mastectomy, 6 months of chemo every other week and 6 weeks of daily radiation. All at age 44 outta the clear blue!

 

[laurabelle]

Laurabelle, you are a very good writer. Did you keep a journal after you were diagnosed? I wish I had but things around the house seemed too hectic,
DS taking exams at end of first year in high school, DD 14 having her exams and graduation festivities at end of 8th grade, DD9's first communion.

All this happened during the 30 days before my surgery. But I am convinced it never comes at a good time.

I am glad your post mentioned getting copies of all pathology reports. I have a file with everything in it except the mammo films, I have the bone scans, chest xrays, catscans, path. reports, everything. I take it to all doctor's visits. If I have another set of test results, having the folder in my hand reminds me to be sure and ask for a copy for my file.

It is so wrong for the docs to predict outcomes as early as they did in your case. The pathology report after the lumpectomy or mastectomy gives much more information than the initial biopsy. A great deal hinges on the size of the tumor, whether there are positive nodes and the "grade" of the cancer.
The definitive answer can't be given with just the biopsy unless it is benign.
Maybe the doctor just wants to make everything ok but this is not what most patients need to hear. Especially the patients that do their homework beforehand.

Oh my gosh no! I just started writing about it last July. I tried to journal, wow, how many journals did I receive then, countless! But I just couldn't focus on anything but my treatment and my family. It's amazing how some of those memories are so vivid, just like it was yesterday. Writing about it, even years later has been very healing...

I went to this 1st surgeon because my gyn recommended him. He was so arrogant (hence his nickname!) I just felt really strongly that there was more to this, I learned to trust the instincts God gave me. I lost alot of sleep just being anxious about getting in with another surgeon. My sister, a nurse, found my cancer center and I have a wonderful team that I clicked with as soon as I walked in the place.
BTW-I still have my original mammogram flims.

 

[laurabelle]

Welcome MinnieM3!

 

[MinnieM3]

Thanks LauraBelle!

Ann, so sorry to hear your news. What a blow! We'll all be here for you! Sending prayers to you and your family.

 

[MinnieM3]

Ok, now for the sharing my story part.... (my class is at PE now!)

I lived in ignorant bliss until the night of Sept. 19th 2003. I leaned across my chest (from right to left) to get something off the table next to me and felt something up against my arm! Continued to feel around, called DH in to feel around (at first he was excited, LOL) and decided to go see my ob/gyn the next day.

Saw her the next afternoon and didn't even get the "it might be a cyst talk". She went straight to, "You have to see an oncologist tomorrow." Sheesh. I knew right then that was it. Got a mammogram (was just about due for my yearly), went to oncologist, got a biopsy, all in the same afternoon the next day.

DX with a 5 cm (yes FIVE!) aggressive tumor in my right breast. It just wass THERE all of a sudden. Very fast growing. No options other than mastectomy. Had that a few weeks later (Being the silly teacher that I am, I wanted to finish out the 9 weeks period!). Knew I'd need chemo, but not rads.

Started chemo in later Nov. OH, I had no nodes positive (YAY!) but the cancer was so nasty and large and aggressive, that they decided to treat me as if I was node positive. Yuck, so now they add in radation.

Anyway my chemo was specifically for me.... single, massive doses of individual drugs. 2 months of Adriamycin every other week. (I continued teaching through that). 2 months of Taxol (had to stop at that point....severe reaction), then 2 months of cytoxin (rough for me). Was hospitalized 5 times throughout chemo and once during rads.

This May 28th will be my 1 year anniv. of finished chemo. Aug. 1 will be my one year of finishing rads!

Having DIEP reconstruction June 7th and am very nervous about it.

Going today after school to get my port flushed (last time!!) They'll take it out during the DIEP operation.

When all this started, we had just sent DD off for her first year of college, DS had just started his freshman year of high school and other DS was starting 4 year old kindergarten. It was a rough time. Then, in the middle of my Taxol, DH gets diagnosed after a routine exam with Kidney Cancer!! He had to have half of his right kidney removed, then threw a pulmonary embolism in recovery adn was taken back down for more surgery. Recoverd 8 weeks at home. No chemo or rads. My poor kids. (DD and older DS's dad had JUST gotten remarried and went off to work in Egypt right before thiss, too.) DD ended up failing her whole second semester at college. Just couldn't take it all. the DS's have been great. DD just finished her lastest semester and got 3 A's, 1 B, and 1 F (oh well, nobody's perfect!).

So glad this group will be here.....like I needed more excuses to be on the DIS!!

I'll be glad to talk/share with anyone, just let me know. Wish I could get in the 40 and under group, too....miss it by 5 years!

 

[snappy]

Welcome to this thread MinnieM3 and thanks for sharing your story. Wow, what a year you had!

 

[NHAnn]

Wow MinnieM3...to echo snappy...what a year!!

I made some calls, talked to my survivor cousin today too, and am feeling a little clearer about some things (thanks in part to you folks too). Hope to SLEEP a little better tonight I am sooooooo tired . But feeling somehow more postive in general!