Dis Breast Cancer Survivors Part II -GAGWTA!

[Pea-n-Me]

Dawn, I rewrote my post last night several times trying to help you make sense of it all. Without having specific information, it's impossible.

Here's some general information about the questions you asked:

Type and Grade of DCIS
http://www.breastcancer.org/symptoms/dcis/type_grade.jsp

How Tumor Characteristics Affect Treatment Options
http://www.breastcancer.org/symptoms/dcis/tumor_char.jsp

Non-Invasive or Invasive Breast Cancer?
http://www.breastcancer.org/symptoms/diagnosis/invasive.jsp

Treating Invasive vs. Non-Invasive Cancer
http://www.breastcancer.org/treatment/planning/systemic/invasive_vs_non.jsp

Margins of Resection
http://www.breastcancer.org/symptoms/diagnosis/margins.jsp

MRI
http://www.breastcancer.org/symptoms/testing/mri.jsp

Sentinel Node Biopsy
http://www.breastcancer.org/questions/sentinel_node.jsp

My surgeon made it sound as if I had a better chance of my lymph nodes being clear due to my age. He said in his experience that a high percentage of pre-menopausal women with my type of BC had clear margins. Is this just a load or did I completely misunderstand what he was saying!?

I think what he probably said was that if it's mainly DCIS that the likelihood the sentinel node would be clear would be high - see here:

http://www.breastcancer.org/treatment/surgery/new_research/20050330a.jsp

After you do a little bit of reading today, I say you treat yourself to something really fun tonight like dinner and a movie. What do you think, GAGWTA Sistas? I am going to try to catch Juno myself tonight, I hear it's a riot.

I saw Disney on Ice yesterday - High School Musical - and I have to say, it was really great!

 

[BeadyLady]

Dawn, since it has been written so well by the others, I won't repeat all of it. the part you need to believe is there is a light at the end of the tunnel. This will be a roller coaster ride of the weird sort, so go with the flow. If you need to cry - please do so - we all have.

But we are still here - hmm, could that be the light? Please believe in yourself - you will get through this. And don't be afraid to ask for help - people will want to help you as it makes them feel better. Then you are helping them - and that is a good feeling.

Stay Strong!

ps - not sure my DH could handle a snake in our house. Fortunately we are in the beginning of yet another snow storm, so highly unlikely.

 

[snappy]

Dawn, since it has been written so well by the others, I won't repeat all of it. the part you need to believe is there is a light at the end of the tunnel. This will be a roller coaster ride of the weird sort, so go with the flow. If you need to cry - please do so - we all have.

But we are still here - hmm, could that be the light? Please believe in yourself - you will get through this. And don't be afraid to ask for help - people will want to help you as it makes them feel better. Then you are helping them - and that is a good feeling.

Stay Strong!

ps - not sure my DH could handle a snake in our house. Fortunately we are in the beginning of yet another snow storm, so highly unlikely.

Ha beadylady we are talking a very small snake here. Years ago at my parents' home in N. Carolina we had a snake incident.

DH was so scared he wanted to call out the National Guard.

My dad thought he overreacted, especially when he got the bill for the snake exterminator who couldn't get the snake anyway, he was long gone. . . slithered into one of the crawl spaces in the brick, never to be seen or heard from again.

This truly was a small snake and he grabbed it with a couple of his blood center donor shirts. The scream was worse for me (but of course I never saw the fated snake).

We need a snake smilie, oh DIS gods.
It sure is nice to have a man around the house.

 

[MerryPoppins]

In the early days after my diagnosis, I couldn't absorb breast cancer info from books and the internet. I felt restless and flighty. That's probably a good thing or I'd have been convincing myself I had the worst possible thing. Instead, DH read everything in sight. That's how he deals with any situation and he "taught" me what he thought I was ready to hear. Later, I started reading for myself, but in the beginning it was all too much. I guess this all depends on the individual too.

And I agree that rest is important. I couldn't sleep in those early days for more than an hour or two at a time. I'd wake up and dark thoughts would take over. I can't remember how many nights I was awake and crying in the wee hours of the morning. There was something super lonely about being the only one awake in the dark. I wish I'd asked for something to help me sleep. I just never thought of it. Your body is under less stress when you are rested and you are able to remain more positive about the situation when you are not sleep deprived.

And a night out is a fantastic idea. Choose something cheerful that'll keep your mind busy. Mental bubblegum is what my husband calls an evening like that.

Laurie, I once found a snake in my kitchen floor. Well, actually the dog found it and was barking her head off. DH scooped it up and took it back outside. I think it was just looking for a warm spot, but it leaves you feeling vulnerable doesn't it?

Well, I'm off to price books at the church book sale. Hope you all have a good day. GAGWTA!

 

[snappy]

Great links, Linda. I read through them all.

Thanks for doing that research for Dawn. It explains the whole invasive vs DCIS thing so much better than I did. I guess I mispoke about using the grade thing to apply to invasive as well as DCIS?

I guess I need to go back and read Susan Love's chapter on this subject. I believe that is where I am confused, it has been ages since I picked up that little book.

 

[Pea-n-Me]

Saying I was in a dark, lonely place after diagnosis would be a huge understatment. I was in despair and thought for sure I might as well start counting down the days until... well, you know. It was a horrible place to be and it took me a very long time to pull myself out of it (years after diagnosis, actually). I'm sure that the work that I do didn't help matters, it became extremely difficult to take care of anyone dying. I am also a huge reader so of course read everything I could to learn as much as I could and it absolutely contributed to my sense of despair. (So much so that I seriously considered burning the Love book when my treatment ended but the practical side of me won out thinking I might need it later. ) Nobody close to me knew how I was feeling because I maintained my cool, calm exposure on the outside, thinking I had to be "strong" and knowing I could. The heck with that.

I've mentioned here many times that I had to put my dog to sleep the same day I lost my hair and it sent me into a huge tailspin. Fortunately I found a wonderful social worker and nurse who ran a local support center and it's they who helped me work the whole thing through. I am deeply indebted to them. Something strange happens - people tell you to let your feelings out, but when you do, they deny them. I'd begin to tell those closest to me I was afraid I was going to die, and they'd tell me to stop, that wasn't going to happen. Damn, it could. And I want to plan if it does! That infuriated me!! So I stopped saying it and held it inside. Talk about lonely. Even at my support center some of the members of my "group" couldn't relate. They apparently had a better take on things than I did. But again, they didn't have to look death in the face every day. That made it hard.

Just wanted to add that thankfully, now, I can finally see that the likelihood I'm going to be ok is very good and will actually assign myself to patients I think could use someone who understands where they are, like someone who's dying of cancer or heart disease, or someone newly diagnosed with sever heart failure and is being told they need a new heart. That's devastating news and really hard to take, especially when you're in the hospital on drips and having invasive procedures as opposed to reading from the quiet of your living room. I enjoy being able to make a difference with these patients, it gives me great satisfaction. I also take it home with me, but you can't give your soul to people and just turn it off when you walk out of the building. This is why I love what I do. It was just hard to do it when I myself was sick. But I do believe in higher meaning and for some reason I was meant to have this experience myself.

 

[snappy]

You have and continue to make a difference with those here as well, Linda.

What a gift you have to give, a source of healing for you and for them. Wow!!

Trust me, you don't get that feeling doing accounting, although I am glad I am working for a not for profit that is making a difference in the lives of the disabled, usually those in need financially as well or underserved in some way.

It feels like I am doing a little bit of good anyway.

And the ones who work directly with the disabled consumers do need their paycheck!!!

 

[Pea-n-Me]

Thanks, Laurie. It's hard even remembering how difficult it is to get this news. I think having young children, too, makes it even that much harder.

Would be interested in hearing how others dealt with the news. How did you cope during the initial weeks of getting your diagnosis?

 

[snappy]

What helped me cope was all about timing. I was distracted by the hoopla around DD12's first communion and DD17's 8th grade graduation. Also, I was participating in what is called Come Lord Jesus, a school based weekly program when parents of 8th graders volunteer to discuss the week's Gospel with a small group of 8th graders and how to apply it to our lives. It really helped, I received "the call" on the last day our group met, someone took a picture of us, I had a goofy fake smile in place. I had not told any of the kids naturally what I was waiting for.

That same night I read the letters written to me from my 8th graders. What a cry I had!!

Also, my one and only sister also had a Birad 4 (suspicious) screening mammogram a couple weeks after mine. As I have posted here she had a large area that looked suspicious to the doc, but it was all removed and benign.

I knew she was out of the woods shortly before my surgery.

I really was thankful it was me and not her. She has had enough trouble in her life, married late, and I would have hated seeing her go through this.

My mom also had a cervical biopsy that same week.

Needless to say I did not feel I had much time to think about me, mostly that was done in the middle of the night.

I listened to contemporary Christian music and burned candles alot, especially after surgery for the weeks I had to do sitz baths until the drains were pulled. I made a ritual of it and made the "bath" as enjoyable as I could make them.

Thank goodness I had my dear snappy dog to keep me company. She was forever at my side. I just don't know what I would have done in your situation, Linda, having to say goodbye to a beloved pet in the midst of treatment. You must be one strong son of a gun, or you play one on tv maybe???

Humor also got me through. Like the time the plug on one of drains kept breaking off, one time leaking all the way through Walmart. Until I could get a new one, DH fashioned a lovely one out of a nail. I really gave him a hard time that he couldn't come up with something better than that.

I even find humor in my reconstruction. I have had terrible stretch marks on the girls since early teens when they grew way too fast, of course there aren't or weren't any on my donor site for my flap reconstruction, my abdomen. Makes for an unusal visual effect. One of the ladies that used to come to my monthly survivor support group had the opposite combination, no stretchies on her chest until the flap was placed. We had a laugh that it was a shame we couldn't swap out.

One day I looked down in the right light and noticed very fine hair on the flap, like the stuff on my remaining abdomen.

And of course I have a bit of craziness the perpetual headlight look on one side and none on the other.

All of the above are wonderfully covered by the right bra. No problemo!!

In fact I like to think I am a bit improved compared to the before, thanks to the dramatic reduction and the virtual tummy tuck from the flap being removed.

It is all in how you look at things I guess.

Man I am longwinded today. Sorry all.

 

[Pea-n-Me]

Humor also got me through. Like the time the plug on one of drains kept breaking off, one time leaking all the way through Walmart.

Until I could get a new one, DH fashioned a lovely one out of a nail. I really gave him a hard time that he couldn't come up with something better than that

Sweet story about your 8th graders!

Seems like your keeping busy was really a good thing!

 

[DeeCeeSW]

Thank you all for your responses and an extra thank you to Linda for providing the links. You are all so wonderful, and I DO know that there is light at the end of the tunnel as you are all here, alive and kicking!!!!

I have less fear of the "d word" than I do of just plain fear of the unknown. I mean, I do kind of know what to expect based on my discussion with the doctor-there is a 99% chance that there WILL be a mastectomy taking place, as this is pretty much a given based on the widespread invasive DCIS.

"It is unclear to me from your post whether the intermediate nuclear grade applies to the invasive or the DCIS part of your tumor." The intermediate nuclear grade definitely applies to the invasive part. Reading this, my anxiety is stemming from whether I will need radiation AND chemo or just chemo. I know I have to come to grips with the mastectomy. I have known for over a month that this was most probably going to happen. Based on the info. I DO have, I know that mastectomy is the best route. The MRI and sentinel node results will determine whether I HAVE to remove both breasts or if I should have a preventative mastectomy even if the left breast is ok, but I think I already know what needs to be done.

Then there's the decision about reconstruction. I don't want to feel rushed into making a decision about it, yet I already do. I know that I need to do what is best for ME, and not what makes everyone else feel more comfortable. My husband is definitely a keeper. I know he did not marry me for my breasts, but for me, and so he is fine with whatever I decide. He wants me to be happy with whatever decisions I make and hopefully not regret doing one thing over the other.

I know that all the information is not in yet and that I should really try to think positively. I am and have always been a "scaredy-cat" about any and all medical procedures, so going through this is difficult just based on the fact that I am being poked and prodded and being put into confined spaces, etc. I literally have to psych myself up for each and every procedure. I told the doc that I am somewhat claustrophobic, so he prescribed Ativan for me (only 1 mg. each, but the script is for 20). He says I should test it out this weekend to see what amount will work for me come Thursday when I go for the MRI. Does anyone have anything to contribute regarding their experience with the MRI? I've never had any type of MRI done.

I did have trouble sleeping last night but I do have some Tylenol PM on hand which tends to do the trick for me (doesn't take much to knock me out, LOL!).

We sat down with DS today and told him everything that went on at my appt. yesterday. We gave this "****y illness" a name, and tried to explain bad cells and good cells, etc. I am extremely upset with DH at this moment as something came over him during this conversation with DS, and without thinking, he actually told DS that I may have to have my ****ies removed. I really did not find it necessary for him to be told this at this point. But now there is no going back. I love DH, but sometimes he just says and does things without thinking. DS has had to absorb a lot today, so we will try to explain more in the next day or two. My fear is that he will now have nightmares about someone taking off his or my body parts. I have not decided about reconstruction, and in reality, I could very well return home with breasts. DS would not have been any the wiser. Then again, there is a chance that reconstruction may have to be delayed and/or that I will decide that it is not for me. Whatever the case, NOW was NOT the right time to bring this up. But now it's done and there's no going back.

Regarding R&R, DH and I actually took in a movie and dinner the night after I was diagnosed (funny enough we saw Juno and it was great). We have rented a couple of DVDs to watch this weekend, but the main event for me will be watching the Oscars. This brings me joy (silly, I know)!

I'm going to test out some Ativan tonight and see how much I need to get woozy but not totally incapacitated, LOL.

Thanks again for all your words. I know I am jumping from one thing to the next. My head is full of stuff that justs needs to get out (and not necessarily in any logical order).

Thanks for the

Dawn

 

[BeadyLady]

Dawn,
I do know about how they do the breast mri over here - and that is very strange the first time. It has to be a guy who thought of this one.

Feet first into machine, then lay on tummy - with b**bs hanging down through a hole cut into a platform. If you wear sweats, you probably can wear those in the machine. NO Metal!!! although gold is ok.

Then they back you into the tube. If you wear glasses - those will come off. I don't like that part (blind as a bat) - but after 3 (or 4?) of these I've learned to pretend to sleep while in the machine. It seems like forever the first time - bang bang bang - but might be 45 minutes total. Your head is closest to the exit - so that kinda helps. What I found to help me this time - is just realizing that I've had to sit through longer procedures than this - and if I can FOG the brain - it goes just better.

I only had from Apr 4th to the 14th before the lumpectomy, not clear margins - so by Apr 28th - the right one was gone. And I don't miss it. My DH said I would always have two - the left one and him. Get it? He does not care. The Drs were very quick with all this - I think I was in chemo by May 5th. My tumor was over 5cm, close to 7cm with the senitel node and two others compromised. Oh, and when I was first told I had bc - I was told it was a wee little spot.

Keep a journal - get a small book you can carry - write your question before the appointments (you'll have many) and carry the book with you all the time. I wrote in mine - how I was feeling. What my blood pressure was that day. How I felt during chemo. reactions to meds. because you do forget, and if it is written down, you can refer back to it. Chemo makes you forget things, so be ready for that.

Stay strong!

 

[MerryPoppins]

Would be interested in hearing how others dealt with the news. How did you cope during the initial weeks of getting your diagnosis?

At first I cried. I cried a lot that first day. Then I sort of got ahold of myself. I decided I wasn't going to fold up and die. I had a life to live and a lot left to do. So I shifted my focus and started to laugh. It wasn't always easy...9/11 was just days after my diagnosis. It sort of felt like the world was coming to an end, but I refused to let it take me down with it.

I'm not saying to deny your feelings. I'm all for letting them out. But for me humor helped more than crying most of the time. I made lots of jokes and tried to find humor in everything. My doctor said that a positive attitude and a sense of humor goes a long way towards recovery. I think she's right.

I also clung to the community of the DIS. Our friend Dan introduced me to some wonderful survivors, who did much the same thing for me that this thread does now. They offered support, prayers, love and acceptance. They tried to answer my nervous questions and helped me find peace.

Dawn, maybe we can help get rid of some of those fears. I've never had to have an MRI, but I've heard others say that the best thing is to keep your eyes shut. My mom hates having them and she closes her eyes and hums to herself to keep from hearing so much of the machine. Others close their eyes and go to a happy place...so imagine yourself relaxing on a beach or lying in a hammock by the ocean. You get the idea. "See" everything clearly in your head down to the tiniest details. Force yourself to relax like you are really there and keep those eyes shut. It's amazing what your mind can do.

My story: I had a choice. They said I could remove the areas of DCIS and just watch carefully. If it returned we could do it all again. They could promise me that they'd keep working until they got clean margins, but not that more of the cancer wasn't somewhere else. They couldn't assure me that there weren't more areas that were too small to see. Ducts within the breast are impossible for a surgeon to see, so they can't just take all the ducts. They honestly told me that the locations of the DCIS (deep within my breast) would leave me with a deformed breast, so I'd still probably need a prosthesis. I'm terrified of surgery, so I wanted to try to put this behind me as quickly as possible. I decided (and it was not the decision for everyone in my shoes) that all things seemed to point to a mastectomy. I figured if my choice was a disfigured breast with more concern about not getting it all vs. no breast with much less concern about remaining cancer - I took the second choice. I also had a reduction of the other breast since they'd always been bigger than I would have liked. Am I sorry? Never. I only wish I had considered a double mastectomy. It'd be nice to sometimes go without a bra without the lopsided look and I found the reduction actually more painful than the mastectomy.

The mastectomy was traumatic. It was hard to take the bandages off that first time. But I soon got used to it and it doesn't bother me at all any more. My DD has teased me that my scar is like a big smile. She thinks I should tattoo a pair of eyes and some lips there since I told her my chest is smiling that we beat cancer.

I had a sentinal node biopsy and no tested nodes were involved. So I didn't have chemo or radiation. From what I hear from family, friends and aquaintances chemo is not nearly as bad as it used to be. It kicks your butt, but you can dwell on the fact that it's kicking cancer's butt too. And each treatment is one closer to that light at the end of the tunnel. We'll count them down with you. Most say radiation isn't that bad. At most it's like having sunburn and a terrible inconvenience that you have to go so often. Having said all that, I should let one of us who has been there share more about chemo and radiation. I took Tamoxifen for several years following my surgery. You'll get mixed reports on that one, but let's leave that for another day since they might not suggest that drug for you...that's on down the line.

I started reconstruction at the time of my initial surgery and reversed it later. I decided I was comfortable with the new me and didn't want to deal with the extra surgeries. Again, a very personal decision. I'm very happy with by prosthesis that my family has nicknamed Betty Boo*. Stop feeling rushed about reconstruction. A prosthesis works fine while you're trying to decide. My doctor assured me when I reversed mine that I could always come back if I changed my mind and I know that option is there. Feel free to take your time if you need to.

I wouldn't worry too much about your DS. Kids are pretty resillient. He'll ask questions if he has them and you can reassure him. What's done is done and you just make the best out of it. My kids were a little older, but I did tell them what I was having done and they handled it okay. Not spelling it out can backfire if someone unknowingly mentions it. So maybe he was meant to know. The main thing that he needs to know is that you're doing what you need to do to get better. Sounds like you explained that.

Hang in there. Enjoy your show tonight and keep breathing. Make it through today and then tomorrow. Before you know it you'll be on the road to recovery, knowing where you're headed. I think a lot of what you are feeling is just dealing with the unknown. I've been there.

 

[Pea-n-Me]

What a nice post, Merry. (Sexy, too ) LOL

 

[DeeCeeSW]

Your head is closest to the exit - so that kinda helps. What I found to help me this time - is just realizing that I've had to sit through longer procedures than this - and if I can FOG the brain - it goes just better.

Thanks for telling me this--it actually makes me feel less nervous. The idea of going into the tube head first was what was causing my anxiety. Having my head closer to the exit is what I was hoping for. I will decide whether to take the Ativan the doc prescribed or some Tylenol PM to help "fog my brain."

I only had from Apr 4th to the 14th before the lumpectomy, not clear margins - so by Apr 28th - the right one was gone. And I don't miss it. My DH said I would always have two - the left one and him. Get it? He does not care. The Drs were very quick with all this - I think I was in chemo by May 5th. My tumor was over 5cm, close to 7cm with the senitel node and two others compromised. Oh, and when I was first told I had bc - I was told it was a wee little spot.

I cannot believe how quick this was for you. We figure it will be another 3-6 weeks before surgery. I notice you had chemo, no radiation?

 

[DeeCeeSW]

Dawn, maybe we can help get rid of some of those fears.

I am SO glad I found you guys, I mean gals, well, you know what I mean...

I only wish I had considered a double mastectomy. It'd be nice to sometimes go without a bra without the lopsided look and I found the reduction actually more painful than the mastectomy.

This is one of the MANY reasons why I think I will be opting for the double mastectomy. The main reason being that I have calcifications in my left breast too, and although they are currently (or at least 2 months ago) "not suspicious," who says they won't be somewhere down the road? I am not willing to take that chance.

Thank you SO much for sharing your story with me. I can't say it enough--I am so happy to have found you all!

x.o
Dawn

 

[DeeCeeSW]

A question--I thought I read somewhere that sometimes chemo is not always a logical solution for some and that taking Tamoxifen may be enough (did I read this on breastcancer.org?).

Doc already told us that I would be taking Tamoxifen for 5 years as this was common for pre-menopausal women.

I wrote all this down but my mind is still playing tricks on me.

 

[MerryPoppins]

Yes, there are times when chemo is not considered necessary. Since I had the mastectomy and the test results came out as they did, I could just do Tamoxifen. Maybe because I had DCIS and clean nodes? If I'd just had the lumpectomy it would have been different. It was either chemo or radiation then, but I honestly can't remember which. I've slept since then. But what they recommend has a lot to do with what stage and all that good stuff. So I can't tell you what they said to you.

It was rather sexy, wasn't it?

 

[snappy]

What a nice post, Merry. (Sexy, too ) LOL

Where is Popdaddy anyway?? lol

 

[snappy]

A question--I thought I read somewhere that sometimes chemo is not always a logical solution for some and that taking Tamoxifen may be enough (did I read this on breastcancer.org?).

Doc already told us that I would be taking Tamoxifen for 5 years as this was common for pre-menopausal women.

I wrote all this down but my mind is still playing tricks on me.

No tricks, you are right. This was my case, even with multifocal DCIS and a small area of invasive, I was able to skip chemo and radiation since at .1 Cm my invasive component was WELL smaller than what some call the "cutoff" for chemo, 1 Cm.

My nodes were clear and the scans were all clean, so no chemo or radiation.
However, he did a very thorough job on the mastectomy, my chest was actually concave which like Merry said, left me very lopsided with my 36DD. I am glad I waited though on that reconstruction. The reconstruction was much, much more involved than the mastectomy and the abdominal pain was ridiculous. Having to live for 2 years in south Louisiana with a big (I mean big) blob of silicone tucked in the bra was a great incentive to do reconstruction. It really helped me justify enduring another surgery, and I got that bonus reduction. Three excisions for the price of one so to speak. I love a bargain.

I really never considered doing a prophalactic mastectomy on my right breast.
Although my second opinion surgeon thought she felt something in my right, and I opted to let her do a needle biopsy. It was thankfully benign but waiting the 6 days it took for that path report was truly nightmarish. I figured if it is in both, forgedda about it, my goose is cooked.

At that point I went back to doc #1, I was so relieved the right was clear, I scheduledd my surgery immediately. I did regret the week I chose (as I think I have posted here previously) since it was right around memorial day and I worried if all the good little pathologists were at the beach and I had the second string guys. Man, the things we worry about. Sometimes I get so mad at myself for obsessing so much. It is so easy to second guess.