Dis Breast Cancer Survivors Part II -GAGWTA!

[MerryPoppins]

Thank you Laurie. That was lovely. That was Buddy. He loved everyone and he knew how to live the good life.

But today he was not enjoying life...it was hard. Still, even as sick as he was, he barked when someone came to the door (he considered himself our burglar alarm) and he greeted our vet with the most friendly wag he had left to give. I've cried a lot today. I won't say I haven't. But I'm relieved, too. He is at peace now and I wanted that for my friend.

 

[NHAnn]

Aw MerryP


Linda...we have a snowbank by our front walkway next to the driveway that is as tall as I am...5'5". We have neighbors up the street have all kinds of equipment (loaders, skidders, plows) and they came down yesterday and cleaned up the rest of our long driveway and turnaround! Which was very nice because even though DH got the snowblower fixed it wouldn't work on the mess that was left from the Wednesday snow/ice/rain storm.

DD had an "uperr GI series w/small bowel follow through" test yesterday, she's been having stomach issues since Thanksgiving....won't get results for another week and a half in the meantime she is started on Nexium which hasn't seemed to improve anything at this point. She was excited though to learn Thursday that she got the summer job she was competing for...she will be teaching swim lessons and being a bunk counselor at a small camp in Vermont for kids with Asperger's and other non-verbal learning disabilities. They are high funtioning but challenging.

Today we are headed over to UNH early...we have our men's hockey (season tix) game tonight but this afternoon their women's team is hosting a "Skating Strides against Breast Cancer" game.....DH enjoys the women's games anyway so we decided we'd get our pink on and go to the is one
http://www.hockeyeastonline.com/women/features/ssabc.php

 

[lookingforward]

We're leaving in a few minutes to take Buddy to the vet. He's had an even worse day today and his sad eyes are telling me it is time. It's such a hard thing to do, but it's right. We're all giving him lots of love and saying our goodbyes.

I openly admit I haven't caught up. It's been a long old day. GAGWTA, and I hope you're all doing okay.

I think we're going for a bite to eat (if any of us can swallow anything) and maybe to a movie after the vet. We just need to get out for a while for a change of scenery.

Oh Merry, I am so sorry. I know how hard it is, I had to do the same with my most beloved dog Lucy. My thoughts are with you and I hope you find the strength to get through. You are doing the right thing for your Buddy.

 

[MerryPoppins]

Today has been better than yesterday, but then any day would be. I have to laugh to keep from crying. DH and I are doing fine. We've teared up a few times, but overall we're okay. DD is still very upset. She's now got a terrible sinus headache. And Sasha (one of our bichons) is looking for Buddy. That makes it hard. She doesn't understand that he's gone.

Today has been a dark and dreary day. It started with freezing rain that turned into thunderstorms. Now it's still raining and the temps are dropping. Tomorrow may be yuck.

 

[annrae]

Some others (the last one is dedicated to you, Amy, LOL - PS looking good for your Valentine's photo )

[/

Linda: Your pictures are awesome - the one of the tail of the Southwest Jet is absolutely amazing. Have yo considered entering any of them in a contest?
Hope all is well - we just returned from the Boston area - I was designated driver (my husband stayed at the hotel) with my sister and I don't think I will ever be the same again after driving in Boston!! I was terrified and I've never had so many people blow their horns at me!!!

Take care. Barbara

 

[Pea-n-Me]

Thanks so much, Barbara. I'm glad you liked them, and glad you had a good stay in Boston despite the maniac drivers. If you're not going at least 80, you're going too slow (and even if you are, you're still going too slow). My father used to like to tell people that Boston's roads started as cowpaths so that's part of why it's so congested, LOL.

Funny you should mention the tail of the plane. That's what Amy and I were referring to earlier (when I dedicated the picture to her - she'd commented on it as well on a Photography Board thread). It's actually the wing; I was in the last row and it was our wing. The plane was only one month old and has a new style of wingtip airlines are using now called winglets, which cut down on resistance and conserve fuel. (I told Amy if another jet had been that close to us, forget taking pictures: I would have had my head between my legs kissing my butt goodbye! )

Amy and I both enter the weekly photo contests on the PB with some of our pictures. The competition is stiff over there, though, lots of great photographers. I enjoy taking photos for our own enjoyment (got my album from last month finished last week) and once in a while if there's one good enough I'll frame it. I enter a local contest in the summer and enjoy making albums and framing shots for family and friends, but that's about it. I've always enjoyed photography but over the past couple of years I've gotten more serious about it. One of those things in life I always wanted to do, and finally made the move to learn for real after cancer. Did I mention I'm also learning how to play the guitar along with my kids?

GAGWTA!

 

[BeadyLady]

MerryP - sorry to hear about Buddy, I know what a change it will be not to have your dog to answer you.


I know I've been lax on posting - I think work/life and knitting get in the way. If I could post and knit at the same time - well that would be something!

I'm not sure who asked - but the answer is - I would only get reconstruction if if would end the pain. Not really worried about not having my right one - I got my DH!

I'm on a new med - did I mention this already? It seems to be working. Tegretol. So, I'm on to get blood test for the liver functions. But little or pain pain? Woo Hoo!

To all: GAGWTA!

 

[annrae]

Hi Linda: I went back and looked at your photo of the plane and then could see that it was the winglet and not the tail. After thinking about it I would not want to be that close to another plane either - yikes! As it is I'm not crazy about flying! I think it is great that you are now learning to play the guitar also! We really need to do the things that we want to do - time is much too precious to waste!

I hope you will continue to enter the contests - I love your photos, especially the pet ones. Barbara

 

[snappy]

Your pictures are amazing, Linda.

I love them.

Great to hear you are learning to play the guitar with your kids. My sister teaches guitar lessons, her DH is now taking lessons from her, as she puts it, they are planning to hit the "nursing home circuit" later this year with newly designed shirts.

She can be a hoot.

 

[annrae]

Our first trip to WDW was in 1977 - our children were 4 and 12 at the time - we drove 26 hours to get there and met my DS, DBIL, and their 3 children and spent 3 nights at the Poly. My husband carried our DS out of the Poly the day we were leaving and he was screaming that he wanted to live at Disney World all the way to the parking lot so I knew we would be returning. We made three other trips always staying at the Polynesian and the trip we made when our son was 16, we took his friend with us so my DH and I had some time to spend by ourselves which was different but fun. In 2000, our DS was married and we have been going to Disney with them since that time - either to WDW or on their Cruises. Our DIL ran the 1/2 Marathon in 2004 and my DH and I volunteered and we had a great time doing it. Getting up at 4am and seeing Epcot at that time of the morning was so nice. We have done a 7 day and an 11 day and this Sept. we will be doing a 5 day Disney Cruise. In 2010, we will be going with our entire family and will be celebrating our 50th wedding anniversary and our granddaughters college graduation as well. I absolutely love Disney - so many people I know always say "Are you not really sick of going to the same place." It is a bit embarrassing but I've gotten used to it and I would rather be with the "magic" than anywhere else. I feel happy, contented, trouble-free at Disney and I also feel like everything is right with the world - now how many other places can one feel that way? I think that we need a lot of magic in our lives and many Mickey and Minnie hugs after a cancer diagnosis. Have a good week everyone. Barbara

 

[Pea-n-Me]

Holy Cow, Barbara. From seeing your pictures I can hardly believe you'll be married 50 years! A hearty Congratulations to you. That will be a great trip!

Re myself and guitar: Let me just say that the kids are doing much better than I am! They seem to be naturals at it; I'm a little confused. LOL

Thank you for the compliments on my pictures.

 

[DeeCeeSW]

Hi all,
I hope this is the right place to post this. A lovely DISer told me to google GAGWTA, so here I am!

After a routine mammogram a couple of days after Christmas (my first one since turning 40), I was told that calcifications (not a lump or mass) were abundant in my right breast and that it warranted a biopsy. After three weeks of waiting to see a breast surgeon, I was told that a stereotactic core biopsy was needed and that "several" samples would need to be taken. I was also told that 80% of the time the results from calcifications were benign and that I shouldn't worry too much about it. I had the biopsy last Tuesday and was told on Friday that all samples came back malignant. Somehow I knew I would be in that 20%. The surgeon had actually told us that if the biopsy results showed cancer that I would NOT be a candidate for a partial mastectomy as the area affected is too large to justify removing so much tissue. So at this point I already know that one breast will likely be removed. I have a feeling that he will suggest they both be removed as calcifications were also found in my left breast, but not enough to cause alarm just yet. I see no sense in not addressing this now since I surely do not want to be in this position again 5 years from now.

I am in complete shock, as my routine GYN appt./breast exam showed no reason for me to even rush to have the mammogram. I guess I should be happy that I actually went and had it done because I may have put it off for months. I will be in touch with my surgeon on Tuesday and I suppose that the big fight will start immediately. The doctor who performed the biopsy barely gave me info. about the exact diagnosis. When I asked her what this was, she actually had the nerve to say, "uhh...it's breast cancer!" like I was an idiot. I asked her what TYPE as there are many, and she reluctantly mentioned DCIS but also said that one of the samples had invasive cells. She was extremely detached (not surprising) and basically told me that my surgeon would be the one to explain the findings. I hear from others that I will have to go thorugh a battery of tests before treatment options can be determined (has it spread to the lymph nodes, has it spread to other parts of my body, etc.).

Right now all I can think of is my DS7. I can't imagine how we will keep it together for him. We do not plan to keep him in the dark as that would really be impossible to do, and besides, he's a smart kid and would catch on soon enough. We have been telling him things in small doses. We have a big WDW trip planned for August, 10 days at WL, our longest trip ever. It is to be our first stay at WL, and with a 40% off code no less!!!!!! I am DETERMINED to make it. In fact, this upcoming trip is definitely one of the many things motivating me to fight on. I know it's just a trip, but you know us DISers. Always thinking of the next trip, LOL!

I have not had a chance to read through this thread, and I plan on setting aside some time to do so in order to get a better idea of what is discussed here. Any advice or support you all can provide is greatly appreciated.

TIA!
Dawn

 

[MerryPoppins]

Dawn, your situation sounds eerily like my own. I could have written most of your post.

I was diagnosed in the fall of 2001. I was 40 and it was my baseline mammogram. I also had calcifications and was called back for a core biopsy. However, I only had calcifications in my left breast and they found no invasive cells. My children were in 5th grade and 8th grade. I was in a panic because of them. They found it was DCIS and after visits with two surgeons I opted for a mastectomy and a reduction of my right breast. (I actually think I wish I'd just had a double, but at the time I didn't think that was something I wanted to do.)

This past year, my oncologist said she didn't want to see me any longer. I'm still her patient if I should ever have a future cancer, but she considers me cancer free for more than 6 years. So that's the positive side of my post. There is life after breast cancer...and mine has been good.

Each cancer is very different. None of us can tell you how it's going to be. But we can answer questions about our experiences. I'd be glad to do that. No question is too silly. I didn't have to do chemo or radiation. I started reconstruction and then later reversed it. I did take tamoxifen.

We've all been there. I think the waiting is the worst part.

 

[snappy]

I am so glad your DIS friend pointed you in our direction, DeeCeeSW, although I am sorry you have joined our ranks.

The radiologist who did my stereotactic needle biopsy told me nothing. I received a call the next day from my surgeon, telling me it was cancer but very treatable, and I was scheduled to go in and see him within a couple of days to discuss a treatment plan more fully.

Basically, we went over in detail the path report, the surgeon explaining it all. My situation was similar, although I was a decade older than you. Like you it all started when I had a screening mammogram which showed calcifications, was called back for a diagnostic diagram and was advised to contact my OBGYN. He sent me to my surgeon, who ordered the stereotactic biopsy.

The biopsy showed like you I also had widespread DCIS, in more than one quadrant of the breast, my surgeon described it as multifocal. The standard of care was and I think still is for a mastectomy with multifocal cancer although I know there have been at least limited studies with doing lumpectomies plus radiation for multifocal. It would be very difficult to get a good cosmetic result though in the case of a woman with smallish breasts, let alone the issue of removing all the DCIS. DCIS tends to snake around throughout the breast.

I also had one very small area of invasive cancer. With invasive cancer, you will commonly have at least a sentinel lymph node removed, perhaps more due to the nature of multifocal areas. That was done for me when the mastectomy was done. Before that surgery they scheduled me for a CT scan of the abdomen and chest, chest xrays, and a bone scan. All fun tests, however, nothing showed up, my lymph nodes (my doc did a full axillary dissection. . . all 16 he removed came up clear), and the path report done after the mastectomy showed more DCIS but no more invasive cancer.

All good there.

When do you see the surgeon again?

I suggest you bring your husband or a close family member or friend with you as moral support for that next visit. Ask to see and even get a copy of your biopsy path report. I also recommend women to start up a file with ALL their test results and carry that with them to visits.

I understand your concern about your son. Even though I am a lot older than you, our youngest was only 8 when I was diagnosed. The timing stunk too, I was scheduled for the biopsy the day after her first communion. It was hard to enjoy the moment that day.

I too was told 80% of the time calcifications are benign, apparently they are very common.

If it is any consolation, DCIS is sometimes called precancer. It is also referred to as the kind of cancer you want if you have to come down with cancer. By its nature it doesn't spread except within the ducts. I have also read that many women have DCIS in their later years, as evidenced by the number of women who die from other causes and are found to have DCIS via an autopsy.

Grim info, but it also tells you that DCIS is very treatable. The invasive component is more worrisome, but there again, there are degrees. Your path report will show the exact size of the invasive component. They measure them in centimeters. Mine was only .1 centimeter, quite small. The path report may also show the grade of the tumor, another important consideration in the treatment plan.

Tests can also be run to see if you will respond to hormone therapy. The path report from my mastectomy showed my tumor did respond to hormones, so I am on Tamoxifen for five years, my only treatment aside from the surgery itself.

There is an excellent website called breastcancer.org where you can read up a good bit on both DCIS and multifocal. I am an information gatherer so I tried to learn all I could before going back to the surgeon. That way I was prepared to ask a lot of questions. I really drilled that poor guy, and went on and did the same thing with a second surgeon because I wanted a second opinion. Each woman has her own approach here, that one may or may not work for you.

Please post again and let us know how you are doing as you go forward on this journey. We consider ourselves to be survivors from the day of diagnosis, that is when the fight begins. We'll be here to walk that road with you.

As Merry posted above, please feel free to ask any question either here, or by pm. She is absolutely right that each case is different, each woman is different.

I had reconstruction surgery about a year and a half ago, with a reduction and am very pleased. At the time of diagnosis my doc recommended waiting on the reconstruction, and I believe looking back it was the right course for me. Although immediate reconstruction is an option in lots of cases,for me the reconstruction, although it was physically challanging, took on a very positive, healing aspect. It seemed to put me back together again both physically and emotionally.

 

[MerryPoppins]

Thanks for stepping in Laurie. I had to end my post because DH was wanting his dinner.

I agree. Take someone with you to those early appointments. Two sets of ears are better than one. Take notes and bring written questions if you have any. Things tend to pop in and out of your head when you're stressed. Ask for copies of all your pathology reports so you can keep a file at home. Don't be afraid to get a second opinion if you feel like you want one.

Oh, and you might be tempted to search online and read everything you can get your hands on. That's good up to a point. Many of the materials you'll see are somewhat frightening until you have a little more information about your case from the doctor. We can point you to some good books and websites if you want, but don't overdo it at this point.

Don't be afraid to cry. Crying is like the little thing that rocks on the top of a pressure cooker. It's a valve that lets the pressure off when you build up too much steam. We've all cried. Just try to look at the positive side as much as you can. You can beat this thing...others have so why not you too? You just need to find out what you need to do to get well. Come her to talk to us as often as you need. We've all been in your shoes. Or PM one of us if you need to "talk" one-on-one.

 

[Pea-n-Me]

Right now all I can think of is my DS7. I can't imagine how we will keep it together for him. We do not plan to keep him in the dark as that would really be impossible to do, and besides, he's a smart kid and would catch on soon enough. We have been telling him things in small doses.

Welcome, Dawn. Many of us had little ones when we were diagnosed, so hopefully that will be helpful for you to know. My twins were just 5yo, about to turn 6. They were all I could think of. I went through a full course of treatment - surgery, chemo and radiation, and they did just fine. In fact, I think it helped make them more compassionate, understanding little people. Your son will make it, too. It sounds like he's got some incredible parents to help him with everything. We'll be here with you no matter what your course. We've got tons of different experiences here. I'm glad you found us.

 

[DeeCeeSW]

Thank you so much for your responses! I already feel so comfortable here. This is so fresh for me right now. It has only been 2 days. All sorts of things are running through my head, some good, some bad. One minute I'm doing ok and am certain that I'll be able to get through this, and the next minute I am a sobbing mess that feels I have no strength to fight it.

I have been trying to take things step by step and it's hard not to as "I really don't know anything until I know something." In other words, right now I am not fully equipped to know what comes next, so it makes it difficult to plan ahead (something I'm very good at, being a DISer and all, LOL).

I will be calling my surgeon's office on Tuesday so that they can tell me exactly what the pathology report says. I hope they will schedule an appt. for me to come in as soon as possible so that we can get started on eradicating this from my body!

I will update you all once I have more info.

Thank you so much!!!

Dawn

 

[MerryPoppins]

One minute I'm doing ok and am certain that I'll be able to get through this, and the next minute I am a sobbing mess that feels I have no strength to fight it.

That's perfectly normal. You'll feel better once the doctor "briefs" you, so to speak. Once you have a plan and get get moving towards getting well it's all much easier to deal with. At least that's been my experience. It's the limbo time that's the hardest.

 

[snappy]

One thing we are blessed with (in addition to having this thread) is that we are dealing with cancer in a time when we can feel comfortable sharing our trials and tribulations. It is of course wonderful that new meds continue to be available, new reconstruction options, etc. And who knows what future research will bring to benefit our daughters and their daughters??

I think it is essential that as survivors we talk freely about what we are going through. I find it easy to talk to my husband and my sister, not so much anyone else in my family. However, I feel very empowered to speak with other survivors. It really helps to get this stuff out of the closet so to speak and out in the open. You can learn a lot from the experiences of others, and it is wonderful that people freely share what works and doesn't work for them.
I read a book several years ago that I checked out of my Cancer Services library that contained a history going back hundreds of years of women suffering from breast cancer. It was a bit shocking but made me very glad to be alive and well in the 21st century, not only for the medical advancements but also for the enlightened attitude towards coping with the disease, not hiding oneself away with it.

The waiting and not knowing the next step is hard, just as hard if not harder than waiting on test results. I agree that being sad and worried is normal. Your life will be disrupted for a while, and it is understandable to be sad at the loss of a "normal" life for awhile. Let yourself feel those feelings, as Merry posted, you will feel better after you get those tears out.

If possible, it seems my DH and I are closer than we were before diagnosis. You really have to pull together. There were times that he cried as well, even at work. I did not know about that until last year, one of his co workers told me. If you knew my big gruff husband, you could not imagine him in tears at work. I bet it really got their attention though. The only other time I have known him to be that emotional was in the Katrina aftermath, when he had a bit of a crying jag, worrying about his sister and family who we couldn't reach and feeling guilty about not insisting they come up to our house like the rest did before the storm hit.

 

[CherylDan]

Hi Dawn

You will find a great group of ladies here to help with any questions you'll have. I know when I found this thread, they were really helpful.

As for my story, I was DX Nov 06, age 44. Stage 2B, grade 3, 7 positive nodes (out of 15), mast, chemo, radiation, & now tamoxifen. Feel free to ask about anything. It's so overwhelming in the beginning......but it will be better once you get some answers and find out what your treatment plan will be.

Sorry you are going thru this. Cancer sucks. But, as you can tell from everyone here, there is life on the other side! Keep looking forward to that upcoming WDW trip - we had one in the works when I was diagnosed too. I went right in the middle of chemo, which really wasn't ideal, but it was a great trip all the same. A little different, for sure, but very special.