Dis Breast Cancer Survivors Part II -GAGWTA!

[Pea-n-Me]

Wondering about Amy tonight - didn't she see the doc today?

 

[DeeCeeSW]

Thanks for the hugs. It certainly has been an emotional day, full of ups and downs. After posting this morning, I received a call from a good friend asking me if I would be able to take her to the ER. She was involved in a minor car accident yesterday and thought she was fine, went to work this morning and then started havng pain in her neck and shoulder. She is fine, thank goodness, just a sprain. They fastracked her so we didn't spend much time there, however, we spent some time laughing about the situation. I mean, I am the one who gives her the devastating news on Friday and who is the one that ends up in the ER?!

I received another call from Nurse Liz this evening telling me that my surgeon has found an opening in his schedule THIS WEEK just for me! I don't know whether to be flattered or extremely worried! Are things even worse than I thought??!! She told me that he is double booked for the next week and a half and that when she spoke with him, he could not justify having me wait too long to see him. So, he is coming in a half hour early on Thursday morning to meet with us.

Honestly, I have no idea who to see/where to go for a second opinion. I feel pretty confident about receiving my care at the Cancer Institute. They are the one and only comprehensive care facility in the state, and having this certification does make me feel secure. Cancer is "what they do," they have all of the resources under one roof, etc. However, reading Pea-n-Me's post also makes me realize that it may be in my best interest to consult with someone else, somewhere else. So many decisions! Would it be odd to ask someone there if they could recommend another surgeon? Nurse Liz explained that an oncologist would automatically be assigned to me at the Institute. Should I be consulting with him/her? My understanding is that the disciplines discuss the new cases during their weekly meetings. If someone on my team did not agree with my surgeon's course of treatment could I expect them to speak up and make other suggestions?

I'll definitely have more answers on Thursday. I am exhausted so I will call it a night.

Again, thank you all SO much for your your support and for sharing your experiences with me.

Dawn

 

[Pea-n-Me]

The two surgeons I saw were both in the same practice - not a problem. Second opinions are pretty standard; they expect them and insurance even covers them. Even within the same practice you can have varying opinions. More likely you'll get a similar recommendation, but then you can know you've done everything you can to explore all your options.

The weekly case presentations are kind of a "gathering of the minds". They present cases and get a consensus of best treatment, application of latest research, different perspectives, opinions, etc, all of which is great. I know this is done at most major oncology centers, I'm not sure about out in the community.

You have a great writing style, Dawn.

my surgeon has found an opening in his schedule THIS WEEK just for me! I don't know whether to be flattered or extremely worried! Are things even worse than I thought??!!

LOL they try hard to accomodate in oncology I've noticed. They know how hard it is to "wait". Try not to worry too much.

 

[laurabelle]

~~~***GAGWTA sistas***~~~
I want spring!!!

Dawn- My original surgeon had a god complex. I couldn't stand him, but I let him remove my lump. When the pathology came back, he said they didn't get clean margins, I needed a re-excision, and my lymph nodes biopsied. He referred me to an onc who could not even see me for a consult for 6 weeks. I was sick over that as much as the cancer news. My sister is a nurse and asked around her hospital (which is where I had my surgery) if her coworkers had a sister with bc, where should she go. Then she called, as a nurse, and set me up with the head onc of the bc center at our university hospital. I immediately felt I was at the right place. My onc and the nurse spent 1 1/2hrs with me answering questions. Oh yeah, and the first thing they told me is, there are no dumb questions. They don't expect you to come in knowing everything, but you sure will get educated quickly!

Your story about taking your friend to the ER reminded me of a bc book I was reading during treatment. A women going through treatment was asked by a neighbor who did not know she was sick, if she could drive him to the hospital. No one had asked her to do anything for them for months. She welcomed doing it, and thought it was swell to be treated like a normal person, and not the sick person for a change!

I had my hubby make the call to his family the night we got the news. I crawled in bed with my kids and watched Muppet Treasure Island. My kids weren't in school, so no one to tell there. I told my pastor. It's hard when people start calling and they don't know yet...I always felt bad for them. A funny wig story: I was in line at the grocery store behind another mom who was an acquaintance, but not someone I cared for. She didn't recognize me in my wig, it was quite amusing to say the least! My one neighbor I told said she had figured it out. My other neighbor seemed excited by the news, as he and his wife had just joined a new church, and now he had someone (me) to put on the prayer list! I got a call from an old, but estranged friend, calling to reconcile our friendship. I thought she heard the news and that's what prompted the call. Nope. It was a God wink!

And yeah, anytime they can get you in earlier for an appointment is a good thing!

Barbara- You are so sweet!

Going for my infusion on Thursday, not a moment too soon. I feel ok so far this morning. Have to get to the grocery store, do laundry, play catch up from doing nothing yesterday.

 

[laurabelle]

Yay! I just noticed my WDW trip is exactly one month away!!!

 

[snappy]

Speaking of WDW trips, the AP rates through 5/21/08 were released this morning. I could not get it to work on the passholder site yet, but if you call
1-407-560-pass, they can do it over the phone.

Call soon if you are traveling in this window and have an AP. hey get snapped up quickly but people are changing their reservations all the time so you could get lucky later as well.

One month to WDW, Laura, that sounds great.

Sheraton VV is going to wow your family.

I hope the infusion a beaucoup helpful this time.

Dawn, I can't help with any of your ? about the team approach, as I only had my oncological surgeon. I did see 2 different surgeons, different groups entirely. In my opinion, you should try and not feel intimidated by asking for a 2nd opinion. Many do. If a doctor can't handle that, I am not sure if I want him. I don't like Dr. God types, like the one Laura referred to.

I am very curious about the answer to question: If someone on my team did not agree with my surgeon's course of treatment could I expect them to speak up and make other suggestions?

I would love to know how this works in the doctor world.

At any rate I would want to know ALL my options, and what the options mean in terms of survivorship (based on past studies). I also like to ask docs that age old question, how would you handle this if it were your wife, daughter, mom, etc?

Hope you got some rest, good luck tomorrow.

 

[Amy]

Hi ladies! Sorry I didn't post yesterday after my dr appt....my DS's were having problems with their computer and I was trying to get it figured out so they wouldn't have to use *my* computer.

Anyway, I had my mammogram and breast ultrasound yesterday. Nothing is "final" until the radiologist reads the mammogram, but the ultrasound tech said she found absolutely nothing abnormal anywhere. She's really good, has been there forever - she did all my ultrasounds during pregnancy, so we're talking 20 years. So things are looking good! Hopefully by Friday or Monday I'll have some official word from the radiologist.

Good luck tomorrow, Dawn!
Best of health to all of you - GAGWTA!!

 

[Pea-n-Me]

Awesome, Amy!

I am very curious about the answer to question: If someone on my team did not agree with my surgeon's course of treatment could I expect them to speak up and make other suggestions?

I would love to know how this works in the doctor world.

Wow, that's a LOADED question!!

The simple answer is, it's very complicated.

 

[snappy]

Awesome, Amy!


Wow, that's a LOADED question!!

The simple answer is, it's very complicated.

I am sure you are right, Linda, and are more informed than most of us with your background.

What I think it all comes down to is finding the right doctor with the right credentials, one that hopefully comes recommended by people in the know (read people in the medical field or surivivors or relatives of survivors), ask that doc directly to explain all your options and their effect on survivorship. Make your informed decision. You do need to be your own advocate. But once you feel comfortable with your doc and his approach, give him your confidence and try not to second guess.

I had a lot of doubts as well before surgery. It actually helped me to have a second surgical opinion in that I could compare the two docs. The first one clearly stood out for me. The second doc my sister liked, she (the second was a female doc and my sister does better with females I think) did her extensive surgical biopsy (no cancer luckily).

I think your questions are perfectly normal with the stress you are under. Please don't take it that I am criticizing you. One good thing about all of us talking about cancer and getting it out in the open is that women CAN network once their diagnosed and find out others' experiences with the treatments, doctors, hospitals, etc. That said, each case is different. There just isn't a perfect game plan for dealing with breast cancer.

New topic:

There is a big article in my paper this morning about the risk factor of gaining weight in middle age, particuarly breast cancer but also other cancers. It was enough to make me serious about dropping some pounds. And just at the beginning of crawfish season too!!

 

[Amy]

New topic:

There is a big article in my paper this morning about the risk factor of gaining weight in middle age, particuarly breast cancer but also other cancers. It was enough to make me serious about dropping some pounds. And just at the beginning of crawfish season too!!

Hi ladies! This is something about BC that absolutely drives me insane!! Particularly since I had been doing Weight Watchers before I was diagnosed and I was within 5 pounds of my goal weight. All this info that weight gain increases your risk of cancer. Yet, many of us are put on Tamoxifen and Arimidex, both of which are known to cause weight gain! (Not to mention the bone pain from Arimidex that makes it difficult to even move sometimes.) In my case, I gained 45 pounds. No matter what I tried, I couldn't lose the weight. I even found $ in our budget and joined a gym for 6 months, worked out diligently 3x a week, watched my diet, and the weight kept creeping on. It wasn't until I hit my 5-year mark and my oncologist told me I could stop the Arimidex that I've been able to finally start losing weight. I just kept wondering if the weight gain was defeating the purpose of the Tamoxifen/Arimidex?? I guess time will tell.

Ok, I feel better venting to folks who'll understand better than my poor DH. GAGWTA!!

 

[laurabelle]

Hi ladies! This is something about BC that absolutely drives me insane!! Particularly since I had been doing Weight Watchers before I was diagnosed and I was within 5 pounds of my goal weight. All this info that weight gain increases your risk of cancer. Yet, many of us are put on Tamoxifen and Arimidex, both of which are known to cause weight gain! (Not to mention the bone pain from Arimidex that makes it difficult to even move sometimes.) In my case, I gained 45 pounds. No matter what I tried, I couldn't lose the weight. I even found $ in our budget and joined a gym for 6 months, worked out diligently 3x a week, watched my diet, and the weight kept creeping on. It wasn't until I hit my 5-year mark and my oncologist told me I could stop the Arimidex that I've been able to finally start losing weight. I just kept wondering if the weight gain was defeating the purpose of the Tamoxifen/Arimidex?? I guess time will tell.

Ok, I feel better venting to folks who'll understand better than my poor DH. GAGWTA!!

Amy- I have heard from more than one onc during Komen and YSC conferences that bc treatment wrecks your metabolism. All part of the post cancer fall out. That being said, I'll take the crap that treatment has brought me, as there was nothing else I could do and I wasn't going to go gentle into that good night!!! I look forward to the day they find a treatment that only harms the cancer cells, not the healthy ones...personally, I'm hoping they say it's chocolate!

 

[DeeCeeSW]

Hi all,
Saw the surgeon this morning. He sat with us for an hour or so, going over the pathology report, answering questions, explaining what tests were needed before coming up wih a treatment plan, and discussing a proposed timeline. He recommended some books to read, and told us about the resource center in the hospital as well as support groups. He had a social worker come in to meet with us (I also have a Masters in SW), and she was very comforting. We spent a good chunk of time with the scheduler setting up my appt. for an MRI. I wanted to go to a radiology group that was closer to home, but no one in the immediate area has the equipment, so we ended up booking again at the hospital's group (where I had the biopsy). At first I was told it would be 3 weeks before they could get me in, then miraculously, about 2 minutes later, a cancellation came in and now I am having the MRI one week from today. I will have a sentinel node biopsy, hopefully a week after. Doc feels the ideal timeframe for the sentinel is 4-6 weeks after the time of diagnosis (or when the biopsy was done). Surgery *should* follow 7-10 days after all the results come in. Doc guesstimates the original calcification area is at least 4-5 centimeters! He says that the size of the tumor and the HER2 results will determine the need for chemo, and that chemo is definitely in the cards if the tumor is 10-15 millimeters.

So here's what my path report says:

Part A (2 samples) Both say invasive ductal carcinoma with extensive ductal carcinoma in SITU, cribriform type, intermediate nuclear grade with central necrosis in associated calcifications.

Part B (2 samples) First sample says extensive ductal carcinoma in SITU cribriform and micropapillary type, intermediate nuclear grade with associated central necrosis and calcifications. Second sample says benign breast tissue, no tumor seen.

Receptors say this is an estrogen positive tumor and we are still waiting on HER2 results.

Any thoughts? I appreciate your feedback.

TIA!
Dawn

 

[DeeCeeSW]

OK, so I've been browsing the breastcancer.org site and I'm now feeling sick to my stomach as I now realize that my BC is advanced and not in the early stages. I guess the tip off should have been the report saying "intermediate nuclear grade." I guess this means that I likely have a tumor that's larger than 5cm. and so I will probably have radiation and chemo and will have to delay reconstruction.

DH keeps telling me to chill out and to stop reading. He says I will not know anything until the MRI and the node biopsy and that I should stop assuming the worst. I am reading this at a reputable site, I tell him. 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!?

Is it possible that the 4-5cm. area he was talking to me about was the original area of calcification that they sampled from, and not the size of the tumor that the MRI will show? Perhaps I am confused. There is nothing on the path report about size. Is it possible to have a small tumor amongst the invasive tissue?

Doc has me looking into seeing a plastic surgeon to discuss reconstruction. Is this going to be all for naught? I thought immediate breast reconstruction was only possible for women in early stage BC and/or those with tumors below 5cm.?

Ugh. Right now, I feel like crawling into bed and not coming out for days. I hate to be so negative, but I was so hoping that this was caught in time. Again, I had NO clue that anything was wrong. No lumps, no palpable masses. This is very hard to take.

Just feeling sorry for myself.... Thanks for letting me vent. Tomorrow will be a better day.

 

[Pea-n-Me]

Dawn

I know how scary it is right now for you. I think you don't have enough information right now to know exactly what's going to happen. Unfortunately, you'll need to wait some more (ugh) to get all the results in before they make final recommendations, including waiting to see what the actual breast tissue reveals after its removed. I think only then will you have a definite treatment plan in place. A coworker went through this last fall and it was so hard.

My case was different. We knew there was a lump, we knew it was invasive cancer and that I'd need chemo and radiation. I only had to decide on type of surgery to have and once my sentinel node came back positive we knew I'd be getting extra chemo.

In your case, you have no lump or discernable tumor (as best I can tell) and DCIS as well as invasive cells. I think the question will be how extensive is the invasive area and will it warrant chemo? (I believe snappy's case was similar.) This will best be known once it's all removed and studied. Sometimes people who choose mastectomy get away with not needing radiation, even, but again, they need more information to base these decisions on like the MRI and sentinal node biopsy, etc. Your team will look at all the information and make recommendations based on what they know about people who've had the same type thing.

I know it's hard (believe me), but chances are very, very good that you will be just fine once you get through this. BC is not a death sentence, it's an obstacle and life changing event, but not necessarily a death sentence. You will get through this like every one of us her has, and chances are great a year from now you will be the one here talking the next person through it. So try to keep that in mind while you're doing this reading. And please take care of your body and soul over the coming weeks so you can stay strong in order to fight the fight.

 

[MerryPoppins]

Dawn, I wish there was something we could do to make you feel better...unfortunately I know we can't. We can tell you that all of us are still alive and kicking. I hope that is a little reassuring.

You just have to take a deep breath and take this one day at a time. You don't have enough information yet to really have your answers. You have pieces to a jigsaw puzzle, so we know a little, but not enough to see the whole picture.

I think your husband is a keeper. Listen to him. If reading that stuff is scaring you, ask him to read it. Let him learn about it and be prepared with questions to ask. You take a break and try to relax a little. Try to think positive as much as possible. It will do no good to dwell on the doom and gloom. I'm counting on the fact that it's going to be better than you're imagining right now. I guess I can't say don't bleed until you're shot since you probably feel like you have been. But don't convince yourself that the shot was fatal before you hear from a doctor. It might just be a flesh wound.

I had DCIS, but mine was non-invasive but in more than one spot deep within my breast. No nodes were positive. Mine was estrogen positive. I can tell you what my choices were, but even if your info matched mine completely (which it doesn't) that doesn't mean your best course of action would be the same as mine. That's one of the worst things about choosing a plan for cancer...you have to listen and learn and then take advice from doctors who are in the know. Then you have to step out there and make some choices. It's really hard. I asked both the surgeons I consulted what they would do in my shoes. They don't like to answer this and I understand that. But I promised them that I wasn't going to make my decision just based on the answer they gave me and I didn't.

Hang in there. Don't panic too much about what you read. I said the other day that books and websites can be frightening at this stage. Try to stay calm until you have all the pieces to your puzzle and can start to piece together where you are going. I promise that soon it will all start to fall into place and once you have a plan you'll probably begin to feel better.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Dawn- I remember one bc book I read early on, I think it was Dr. Love's book, and she said specifically to only read the parts that you knew pertained to you...your imagination can run wild. And you don't have all the pieces to your puzzle yet. You want to educate and empower yourself, but without freaking yourself out...it's a fine line, but you'll find perspective.

Linda's right, bc doesn't have to be a death sentence, but unfortunately there are still women who die from this disease. I honestly don't know what makes them different, but there are more and more of us surviving it. I went to my support group meeting last night. It's always interesting to talk to the newly dxed women. Even though I am 9yrs past dx, I can still relive those feelings. I think feeling like crawling into bed and not coming out for days is perfectly normal.

All the stuff I wrote in my other post to you that I have done for treatment was not done all at once, and to write it all down doesn't begin to cover what it was like to go through it. You'll find out you can do some pretty incredible things...that's why we're called survivors!

My creed was (and still is) Faith, Family, Positive Attitude, a Sense of Humor, and taking things One Day (or hour or minute) at a Time. And when I start feeling those negative, scary thoughts creeping in, I shift my thinking back to those things in my creed...in that order.

 

[snappy]

Dawn, Linda is absolutely right, the size of the invasive component is one of the key factors. I am not sure that this can be determined solely by the type of biopsy you had. Maybe the jury is out until you have the surgery and the full path is known.

As Linda posted, my case is somewhat similar.

My impression was that there were many samples taken during my biopsy, due to the fact that the diagnostic mammogram showed two areas of calcifications. One area was very close to the skin surface so they probably had to fire the gun more times as I think it was a struggle for them to capture tissue with the length of the needle. I remember a lot of conversation about that between the radiologist and the many nurses who were integral parts of the procedure. I have to say I did not really like hearing that conversation.

My impression was that because they took so many samples, they were able to define the exact size of the INVASIVE component of the tumor. I think this because the path report described the invasive component "in greatest dimension."

The size of the DCIS is not as troublesome except to the degree it affects the surgeon getting clear margins. They want to get it all out of course, some women have a second surgery to remove tissue until clean margins are obtained, others go on to the mastectomy.

In my case although I had multifocal disease, the invasive area was only in one area and small. So multifocal is not necessarily too worrisome except the standard of care is the mastectomy. I also felt like it made it a little easier for me since I did not have to agonize over the lumpectomy vs mastectomy question.

For what it is worth, I pulled out my biopsy path report:

final diagnosis:

Part 1: Left breast tissue, core biopsy, retroareolar region: ductal carcinom-in-situ, comedo type with calcifications.

Part 2: Left breast tissue, core biopsy, upper outer quadrant: small focus of infiltrating ductal carcinoma, .1 cm in greatest dimension. Associated ductal carcinoma-in-situ.

From my mastectomy:

No residual invasive tumor identified. Two foci of residual ductal carcinoma noted adjacent to the biopsy site. Largest focus of ductal carcinoma in situ measures 2 cm in greatest dimension.

Negative nipple. No evidence of malignancy in 16 nodes.

I understand that reading about the grades is scary. The best I can tell is that the comedo type is the worst, which is what I had in part 1 (see above). However, this was the DCIS part, not the invasive part in part 2. That has always confused me, that the grade can apply to both invasive and non-invasive cancer. It is unclear to me from your post whether the intermediate nuclear grade applies to the invasive or the DCIS part of your tumor.

I believe I would ask about this if I were you. Mine was spelled out pretty well.

I was worried as well about mine being the comedo type. I believe what I read in Susan Love's book and elsewhere that describes comedo being the worst grade must have been related to invasive cancer.

Again, large areas of DCIS even measured in centimeters is more an issue for the docs to remove than for your survivorbility. I am hoping that you can get clarification on the size of the invasive component.

Regardless, I am glad your MRI is scheduled and you can move on.

As regards to reading a lot about cancer in books and the internet, I did this as well. It did scare me, I had a lot of trouble sleeping. I asked for a sleep aid, I just took a few since even with the med, I woke up far too early. In fact I still have half of that Ambien prescription (from 2004). You might want to consider asking for one if you are experiencing the same problem.

It did not deter me from reading, I read just about every book in my Cancer Services library and many in the public library, as well as buying a handful. But I am an information gatherer from way back, it is part of my personality makeup I think. I just research eveything to a fare the well. Scary or not I needed to know. But that is just me.

Hope the above is not scary to you, or too much information. It was intended to help.

Take care.

 

[snappy]

~~~***GAGWTA sistas***~~~

Dawn- I remember one bc book I read early on, I think it was Dr. Love's book, and she said specifically to only read the parts that you knew pertained to you...your imagination can run wild. And you don't have all the pieces to your puzzle yet. You want to educate and empower yourself, but without freaking yourself out...it's a fine line, but you'll find perspective.

Linda's right, bc doesn't have to be a death sentence, but unfortunately there are still women who die from this disease. I honestly don't know what makes them different, but there are more and more of us surviving it. I went to my support group meeting last night. It's always interesting to talk to the newly dxed women. Even though I am 9yrs past dx, I can still relive those feelings. I think feeling like crawling into bed and not coming out for days is perfectly normal.

All the stuff I wrote in my other post to you that I have done for treatment was not done all at once, and to write it all down doesn't begin to cover what it was like to go through it. You'll find out you can do some pretty incredible things...that's why we're called survivors!

My creed was (and still is) Faith, Family, Positive Attitude, a Sense of Humor, and taking things One Day (or hour or minute) at a Time. And when I start feeling those negative, scary thoughts creeping in, I shift my thinking back to those things in my creed...in that order.

Very eloquent post, Laura. It really spoke to me, as I think it will speak to Dawn and all here. You are a real inspiration. I was blessed to be able to meet you and your older daughter last year at the Orlando RFTC.

Laura, you are beautiful person inside and out. You give us hope and inspiration.

Hope you are felling better this week.

 

[snappy]

Ok, different topic completely, but we HAD A SNAKE IN OUR LIVING ROOM THIS MORNING!!!!.

I did not see it with the light off when I walked through, but DD17 saw it when she was getting ready to leave for school. Man did she scream!!!!

It was small and thin, DH brought it outside and released it. It has been raining and is incredibly humid and actually warm today. Maybe the rain made it seek shelter in our living room?

Maybe it is a sign that I need to clean??

On the bright side my iris's are blooming now, along with my azalias (not to mention the weeds). All the plants and trees are sucking up the rain, so I am trying to look on that bright side.

I really don't feel like going to work today. I guess I could claim snake stress or something. Hearing her scream from the other room was enough to give you a heart attack. It was blood curdling. I was actually relieved it was "only" a snake.

 

[Pea-n-Me]

LOL snappy

I could claim snake stress

I definitely think it warrants a mental health day.