Dis Breast Cancer Survivors Part II -GAGWTA!

[MerryPoppins]

Beautiful verses. I like those too.

Yay for getting a comfortable MRI. You're doing great.

Lookingforward, just a little over a month to go with chemo! You're almost there!

I'm just back from my yearly mammogram. (Feels good to say yearly in front of that.)

It's supposed to snow, but it may be tracking more south than originally thought. Maybe it won't add up to much.

Guess I should get back to painting. I'd love to finish the dining room this weekend and we're slow.

 

[snappy]

Beautiful verses. I like those too.

Yay for getting a comfortable MRI. You're doing great.

Lookingforward, just a little over a month to go with chemo! You're almost there!

I'm just back from my yearly mammogram. (Feels good to say yearly in front of that.)

It's supposed to snow, but it may be tracking more south than originally thought. Maybe it won't add up to much.

Guess I should get back to painting. I'd love to finish the dining room this weekend and we're slow.

I assume everything was AOK, Merry?

Ha Merry, we must be on the same schedule, mine is tomorrow at 11 am. It kinda snuck up on me, my doctor wrote a script and put down May so I called Wednesday to set something up. Last year was March 2nd, and I really don't like to go past 12 months.

The surgeon that did my sister's surgical biopsy back in 2004 told her not to go even 1 day past a yearly mammogram. I guess she was saying not even one day just for emphasis but it worked on ME, I still remember that statement vividly, along with a lot of other stuff.

 

[snappy]

Laurie- I do hope and pray your son is prepared and does well on his exams. I'm glad he's coming home, sounds like he needs a break!

The whole book of Philippians is full of comfort and joy...and Paul wrote it from prison! I have lots of different versions of the Bible, but for just sitting down and getting into the word, I love The Message version. Here's a link to Bible Gateway where you can not only look up verses, but read lots of different versions online. http://www.biblegateway.com/passage/?book_id=57&chapter=1&version=65

Thanks, Laura. I can't wait to speak to him tonight. I try to limit my calls.

It is hard.

Thanks for the link for the Bible verses.

 

[MerryPoppins]

I assume everything was AOK, Merry?

Now that I'm back on the yearly plan, they don't say much before they send me on my merry way. But I had no reason to think there was a problem. The girl who did them today was not the girl I particularly like. My left (mastectomy side) is always more uncomfortable, especially because I have Brachial Palsy from a birth injury that makes that arm crooked. Some find it hard to pinch the little bit of meat I have left without my arm or tummy in the way. This girl didn't get it and we had to do several films to get it right. I thought I was going to walk out with a pancake sticking out on that side by the time she was through with me. That's okay though, the last one was clear and she got the whole thing.

I did meet two of the nicest women today while we were waiting in our little capes. They were a bright spot in my day. One had had a double mastectomy when she kept having lumps at a young age (with dense breasts) and her mother had died of breast cancer. She finally decided that all the waiting to find out and biopsies were not worth it and just "got rid of the problem". She was really sweet. The other woman was the nicest lady who is a nurse. Nothing really thrilling to share, we just all clicked and they've kept me smiling all day.

DH is due home any minute. We're going out to dinner with a friend who trained him in New York and her co-workers. They're visiting this week, so we're taking an evening to help entertain them. Should be fun.

GAGWTA!

 

[NHAnn]

Typed a long post this a.m. and lost it! grrr

Nicole and family are in my prayers (and thanks Laura for the beautiful passages). That is so unfathomably sad.

Linda...many thanks for the DCIS article, I found it very reassurring.

Glad the mamm went OK Merry!

And glad the MRI went well Dawn, (finally ) !!

Maureen, wow, you are moving right along girl!!

Snappy...that is one CUTE puppy...when I saw her picture , I thought she looked like a teddy bear too, and the 1st name that came to me was Winnie.
(the POOH bear!) Oh that sweet face...(and oh all that FUR )

hugs and prayers to all!
GAGWTA!!

 

[snappy]

Gosh Merry, they do a mammogram on your mastectomy side? I did not get them on my missing side before reconstruction, nor do I get them now with the flap.

I like to kid them about charging me half prize. Such a kidder.

Thanks for the good thoughts for my DS, Laura. He sounded great when I talked to him, he has picked up his studying alot. He said he only got 4 hours of sleep last night. If he only knew about all the people who study all night!!. I was not one of those, and he surely was not in high school. He wqould just up and go to bed when he still had a lot to do on papers. I seemed to be the one holding the bag so to speak.

Needless to say I like college better.

 

[MerryPoppins]

Gosh Merry, they do a mammogram on your mastectomy side?

Thanks for the good thoughts for my DS, Laura. He sounded great when I talked to him, he has picked up his studying alot.

Yes, they always have. There is just enough there for them to pinch a bit in and squash it down. Dang that smarts! Sort of like how pinching a tiny bit of skin can hurt more than a big hunk if that makes sense. And it's really hard to get my arm and tummy out of the way. I sort of feel like a contortionist. It's point your chin this way and hold your arm like this, point your feet this way and rotate your hip that way. Eek. Then I wonder how long I can hold the pose.

Glad your DS is coming home for a little TLC from mom (and clean clothes). Mine is coming home in a couple of weeks for spring break. We have yet to decide if we are doing something fun for a few days (as in going somewhere) or just doing a couple of fun things around our area and working on the house.

 

[snappy]

Our spring break will be lowkey too.

DH, as much as he has been working, was told by his boss, the owner, that he will be pulled in many directions for the next few weeks.

I did not think it could get any worse.

Good thing, he has been riding the stationery bike alot, and joined me at DD12's volleyball tournament last night.

Another good thing, the cardiologist saw him this week, the stress test was all good, and he told him to continue doing what he is doing. He did much better on the stress test than last September, thanks to the frequent turns on the bike.

Bad thing, the house and yard are a mess. He usually has much more time to do more. I hired someone to treat the yard for weeds and fertilize.

I hope my new cleaning lady doesn't go screaming into the night.

The puppy has added a whole new dimension to this.

 

[DeeCeeSW]

GAGWTA!!

As you all know, I had the Breast MRI on Wednesday and the results came in yesterday. My breast surgeon called to go over the report with me last night. He said I should ignore most of the radiologist’s recommendations and just concentrate on the findings as the radiologist is not aware of what my surgical plan is. The bottom line is that my surgeon was able to get the information he needed, and that is that my tumor is under 2 centimeters ("1.8 max it says"), which means I have EARLY breast cancer, specifically Stage 1!!! This is GREAT news. Happy Birthday to me!!!

Doc says that chemotherapy will most probably still be needed but that radiation will be avoided if my lymph node biopsy comes back clean/negative. I asked him why he wanted to perfom the sentinel node BEFORE the mastectomy and he said that it has everything to do with whether or not I want immediate reconstruction. Should I decide to wait, the biopsy can be done during the mastectomy and not as a separate surgery. He also recommended that I do NOT remove the left breast as it is considered “healthy” as the MRI confirmed that it is cancer-free. He says the chance of getting cancer in the left breast is 15% over the course of my lifetime. He says this percentage remains the same whether I decide to have the breast removed or not (?) And should I develop this type of cancer again in the left breast in the future, my chances of dying from it is only 4%. So the question he posed to me was if I think it is worth it to remove a good breast based on 4%. Does this make sense?

I appreciate his recommendation, however, I think he needs to keep in mind that I was originally told that 80% of breast calcifications end up being benign and that I ended up in that 20% that lead to cancer. This needs serious consideration when it comes to deciding about bilateral vs. unilateral mastectomy. I don’t have much time to think, though, as things are now starting to move quickly. I am seeing another plastic surgeon (for my third and final opinion) next Weds., and once I make a decision about reconstruction, the node biopsy will happen within a week of that with the mastectomy happening a week to 10 days after that. I have a meeting set up with a genetic counselor and a psychologist next week to talk about whether I should be tested for the BRCA gene and to discuss my feelings about reconstruction. Testing might be helpful to me and would help with my decision. The problem is that this test is very expensive (not all insurance companies will cover it) and the results take about THREE weeks to get back, which, will, of course, delay my treatment plan by three weeks. I’ve been reading some books and articles about this BRAC analysis and many doctors actually recommend that you rid of the cancer you have now, deal with that, and then get tested LATER as a very small percentage of women actually get cancer due to heredity (7-10%, I think).

So that's what's what. Off to celebrate my 41st on this rainy day!!!

Dawn

 

[lookingforward]

GAGWTA!!

As you all know, I had the Breast MRI on Wednesday and the results came in yesterday. My breast surgeon called to go over the report with me last night. He said I should ignore most of the radiologist’s recommendations and just concentrate on the findings as the radiologist is not aware of what my surgical plan is. The bottom line is that my surgeon was able to get the information he needed, and that is that my tumor is under 2 centimeters ("1.8 max it says"), which means I have EARLY breast cancer, specifically Stage 1!!! This is GREAT news. Happy Birthday to me!!!

Doc says that chemotherapy will most probably still be needed but that radiation will be avoided if my lymph node biopsy comes back clean/negative. I asked him why he wanted to perfom the sentinel node BEFORE the mastectomy and he said that it has everything to do with whether or not I want immediate reconstruction. Should I decide to wait, the biopsy can be done during the mastectomy and not as a separate surgery. He also recommended that I do NOT remove the left breast as it is considered “healthy” as the MRI confirmed that it is cancer-free. He says the chance of getting cancer in the left breast is 15% over the course of my lifetime. He says this percentage remains the same whether I decide to have the breast removed or not (?) And should I develop this type of cancer again in the left breast in the future, my chances of dying from it is only 4%. So the question he posed to me was if I think it is worth it to remove a good breast based on 4%. Does this make sense?

I appreciate his recommendation, however, I think he needs to keep in mind that I was originally told that 80% of breast calcifications end up being benign and that I ended up in that 20% that lead to cancer. This needs serious consideration when it comes to deciding about bilateral vs. unilateral mastectomy. I don’t have much time to think, though, as things are now starting to move quickly. I am seeing another plastic surgeon (for my third and final opinion) next Weds., and once I make a decision about reconstruction, the node biopsy will happen within a week of that with the mastectomy happening a week to 10 days after that. I have a meeting set up with a genetic counselor and a psychologist next week to talk about whether I should be tested for the BRCA gene and to discuss my feelings about reconstruction. Testing might be helpful to me and would help with my decision. The problem is that this test is very expensive (not all insurance companies will cover it) and the results take about THREE weeks to get back, which, will, of course, delay my treatment plan by three weeks. I’ve been reading some books and articles about this BRAC analysis and many doctors actually recommend that you rid of the cancer you have now, deal with that, and then get tested LATER as a very small percentage of women actually get cancer due to heredity (7-10%, I think).

So that's what's what. Off to celebrate my 41st on this rainy day!!!

Dawn

Great news! I had the sentinal node biopsy during my surgery, but I am doing implants and you are trying for tram-flap right? It is a HUGE decision about the other breast. I chose to keep mine, but its scary. I will have to have MRI
of it at least every year. I did have the braca test and my insurance covered it. I did it after my surgery and it took about two weeks to come back. It was negative, thankfully.

Things are looking good (as good as having breast cancer can look so keep the positives in your mind and you will get through it okay. Hang in and go with your gut on the decisions left up to you.

 

[DeeCeeSW]

I had the sentinal node biopsy during my surgery, but I am doing implants and you are trying for tram-flap right?

This is so interesting to me. My breast surgeon explained that he prefers to do the sentinel node biopsy prior to mastectomy when a patient wants immediate reconstruction regardless of what they choose, implants or flap.

His rationale is two-fold:

1) He would not want his patient to wake up expecting one thing to happen (having a new breast or breasts constructed), only to wake up and find that this has not happened because the sentinel node biopsy was positive and showed cancerous nodes,

and (less important but still relevant),

2) Immediate reconstruction involves two surgeons who have to coordinate their schedules in order to make the surgery possible, and if the sentinel node shows cancerous nodes, the surgery cannot be completed, and the plastic surgeon cannot do his/her job and has to leave the OR, as positive nodes will normally require radiation treatment, which will negatively affect newly constructed breasts (and supposedly cause more "damage" to implants).

I guess your surgeon was confident that your nodes would be clear so he/she did the sentinel node during your mastectomy? Or is it that you waited until after the mastectomy to reconstruct (forgive me, I do not recall)?

I told my doc that I, of course, do not want to go through any more surgeries than I absolutely have to and he completely understands where I am coming from. However, if I do decide to have immediate reconstruction, he is pretty insistent that I have the biopsy done first (and frankly, it makes sense to me, but that's me).

I am interested in flap surgery, specifically latissimus (back) WITHOUT an implant. Not many surgeons will do this as apparently the skin from the back is usually not sufficient enough to mold a "decent-sized" breast. My plus-sized frame may actually work in my favor in this situation as Plastic Surgeon #1 said he could make me a big B, possibly a small C-cup. Plastic Surgeon #2 didn't even examine me or get up from his chair and stated that due to my "obesity," my ONLY option is implants. He went as far to say that the back surgery "would not be worth it to me" because I would end up with small breasts that would "barely stick out from my chest wall." He also said that the skin transfer would not be possible and that more than likely "the skin would not survive, would turn black and die." Nice.

PS #2 also had the audacity to tell me that the chances of me losing weight at this point in my life are slim to none as I have been carrying extra weight for almost 20 years and that "only surgery, a lap-band or gastric bypass, would work for me." Umm...WHAT? I am not 500 pounds, 400 pounds, or even 300 pounds. And even if I was, how DARE you say something like that?

As it turns out, according to my Breast Doc, PS #2 has LITTLE to NO experience with flaps and prefers implants because they are easier for HIM to do (and this man is the HEAD of Plastic Surgery at a major hospital). Breast Doc said he would have never suggested him if he had known about my desire to avoid implants. All I can say is that this has been quite a learning experience. Plastic Surgeon #1 isn't looking so bad after all, LOL.

I see PS #3 next Weds. and by then I should know who to go with and/or what to do.

Deep breaths, in and out....LOL

 

[MerryPoppins]

I can see where your surgeon is coming from, Dawn. Some people might not be comfortable waking up without knowing what had come to pass. It might be easier for the doctor to line everything up if you do it in advance. All I have to say is look for a plastic surgeon that you really think you'd like. You might even ask if there are some happy patients that you could contact.

I had a mastectomy and my surgeon did my sentinal node at the same time. My plastic surgeon (the first and only that I talked to unfortunately) put in an extender at the same time as my surgery and a did a reduction of my remaining breast. Later I was to go back and he'd put in a saline implant. Two months later I had the extender removed and reversed the reconstruction.

My plastic surgeon experience was not the norm. It was a total nightmare. The extender had burst and we were going to have to start back at square one. Also I'd become disenchanted with the plastic surgeon and his staff. After he did the reduction (which came out smaller than I'd originally requested) he surveyed his work and suggested maybe we should add an implant there to fill it out a little more. And his nurse almost came to blows with me when I refused to schedule surgery to remove the extender on Christmas Eve. They also couldn't understand my desire to have surgery in the hospital or surgical center instead of in his office operating room. I'm sorry, if he's cutting me open, I want to be where they can do something if there's an emergency. I've never even considered looking at other plastic surgeons. It all worked out in the end. I'm comfortable with Betty and have no desire to go through all that again.

 

[laurabelle]

Dawn- Glad you are getting good news. I just have a sec. as I need to run out but I wanted to give you my friend's website, to help you find info on BRCA testing. www.facingourrisk.org

 

[MerryPoppins]

I just realized I sounded like a real downer. I've never shared all that with anyone. It was a rough time for me and my plastic surgeon and his staff were not in the least understanding. Everything was cold and clinical.

The last thing I want to do is make anyone feel nervous about their doctor. Just please don't go with someone if your gut says they're not a good fit. I did and it wasn't good.

 

[Pea-n-Me]

One thing repeatedly driven home here when discussing our stories is how very unique each case is.

according to my Breast Doc, PS #2 has LITTLE to NO experience with flaps and prefers implants because they are easier for HIM to do (and this man is the HEAD of Plastic Surgery at a major hospital). Breast Doc said he would have never suggested him if he had known about my desire to avoid implants.

DeeCeeSW, I would keep an open mind until you've met all three surgeons. I would be suspect of one surgeon badmouthing another, too - there could be a history there. It would be hard to fathom that someone who heads a department of a major hospital doesn't know about the most recent trends in plastic surgery. He's overseen the care of thousands of patients as well as had a lifetime of experiences with his own patients. (BTW, many surgeons aren't known for their stellar personalities either, LOL.)

FWIW, a friend at work just spent an extra two months out on leave due to non-healing post operative wounds secondary to obesity. (Obesity, in medical terms, is description based on BMI, not a value judgement.) My gut sense would be to consider very carefully what PS#2 is telling you.

my tumor is under 2 centimeters ("1.8 max it says")

Is a lumpectomy still not an option?

Another thought I had was whether you've gotten the opinion of an oncologist yet? They are usually the experts in adjuvant therapies (chemo, radiation), while the surgeons are experts in, well, surgery. Just wanted to say that in case you find the oncologist tells you something completely different than what the surgeon says. Fun, I know.

Hang in there. Remember, baby steps.

 

[Pea-n-Me]

I just realized I sounded like a real downer. I've never shared all that with anyone. It was a rough time for me and my plastic surgeon and his staff were not in the least understanding. Everything was cold and clinical.

The last thing I want to do is make anyone feel nervous about their doctor. Just please don't go with someone if your gut says they're not a good fit. I did and it wasn't good.

Actually, Merry, as soon as I finished the above post I was going to mention that I really liked yours.

IMO you were wise to insist on going into a hospital for surgery. I would do the same.

As we've talked about before, it's very challenging trying to post here sometimes. I often feel angst about what, whether or how to say something. None of us wish to make anyone more nervous, upset or offend anyone, etc. But sharing experiences, knowledge, information, opinions and support is why we're here and hopefully what we say is taken in the helpful spirit in which it was given, even though it may not always be the most upbeat information or what we think someone wants to hear.

I'm officially rambling but you get my drift.

 

[MerryPoppins]

Yeah. Most women who have a mastectomy want reconstruction. I can sure understand that. I did too. I never even considered skipping that step. At my age it seemed like a necessary thing.

Then, I had Dr. Disaster. It was a horrible experience that made the rest of what was going on a piece of cake. I hate to tell people how it went for me. I don't want to discourage, but at the same time they should know not all reconstruction is sunshine and roses.

 

[DeeCeeSW]

I just realized I sounded like a real downer. I've never shared all that with anyone. It was a rough time for me and my plastic surgeon and his staff were not in the least understanding. Everything was cold and clinical.

The last thing I want to do is make anyone feel nervous about their doctor. Just please don't go with someone if your gut says they're not a good fit. I did and it wasn't good.

You are not being a Debbie Downer. I am glad that you felt comfortable enough to talk about it. You needed to talk about it. I am so sorry that your experience was such a bad one. Please do not be concerned about me (if it was me you were thinking about). I have already had one so-so consultation and one totally inappropriate and demeaning one. I will keep going until I find the right PS for me. All I can say is thank goodness for my husband, his job, and his health insurance, which is allowing me to get second, third and even fourth opinions.
I appreciate all that you have to share and I hope you continue to do so. It has helped me A LOT.

Dawn

 

[DeeCeeSW]

DeeCeeSW, I would keep an open mind until you've met all three surgeons. I would be suspect of one surgeon badmouthing another, too - there could be a history there. It would be hard to fathom that someone who heads a department of a major hospital doesn't know about the most recent trends in plastic surgery. He's overseen the care of thousands of patients as well as had a lifetime of experiences with his own patients. (BTW, many surgeons aren't known for their stellar personalities either, LOL.) My gut sense would be to consider very carefully what PS#2 is telling you.


Is a lumpectomy still not an option?

Another thought I had was whether you've gotten the opinion of an oncologist yet? They are usually the experts in adjuvant therapies (chemo, radiation), while the surgeons are experts in, well, surgery. Just wanted to say that in case you find the oncologist tells you something completely different than what the surgeon says. Fun, I know.

Hang in there. Remember, baby steps.

Breast surgeon says that lumpectomy is not an option and never has been due to the two cancers going on at once in the same breast as well as the fact that there are still widespread, diffuse calcifications within the breast. He explained that I could opt for chemo first if the tumor was small, however, most women end up with the mastectomy in the end anyway in cases like mine. I have researched this and found his recommendation to be sound.

Regarding him bad mouthing PS #2, I did not feel he was doing that at all. He explained that of the 6 doctors he recommended to me (PS #2 being one of them), some were more experienced with flap surgery than others. He explained that PS #2 tends to concentrate more on cranial and facial surgeries and does very few breast reconstructions throughout the year. When he DOES do them, he tends to recommend implants. Breast surgeon stated that PS #2 has done very few flaps (less than a handful) and that PS #1 and PS #3 have done many latissimus dorsi flaps w/o implants with very good outcomes. Even Dr. Love talks about how some PSs will tell us that certain procedures are not right for us when the reality is that they have little experience doing them or do not know how to do them at all.

PS #2 and Breast Doc work together A LOT and PS #2 even talked about what a great guy Breast Doc is and how they "break bread" at each other's family dinner tables often. I did not find Breast doc's comments inappropriate or mean-spirited at all. He simply stated that he would have steered me in a different direction at the outset had he known I was definitely not interested in implants.

I wouldn't trust a doctor who bad-mouthed a co-worker either, especially someone who would speak badly of a head of a major department in his own hospital. Why would he bother to refer him to me in the first place? Makes little sense.

If anyone was bad-mouthing PS #2, it was me. I appreciated his straightforwardness as I am a no nonsense gal, but some of the things he said were truly unnecessary and inappropriate. The man did not get up from his chair. He did not look at any part of my body. He came to the conclusion that latissimus dorsi surgery was not for me from a distance. I don't care how experienced he is or thinks he is---at least have the decency to get off your own fat *** and assess the situation properly. Seeing him was a complete waste of my time, and money. The only information I came out of that session with was that I am a fat *** who will never lose weight and that I am apparently so fat that I can't use my own skin to make breasts because it will die and be useless. Yes, I am technically obese because of my BMI. I know this. But I am not MORBIDLY obese. This man has no idea how I became overweight or why and whether or not I have the strength and/or will power to lose weight. He does not know me at all. * END OF RANT*

PS #1 stated that latissimus dorsi w/o an implant is, in fact, possible for me. He showed me several pics of his work, specifically the results of the surgery I am asking for. PS #2 said the complete extreme opposite, that NONE of it is possible. These are two very differing opinions. Something is rotten in Denmark. Now I want to hear what PS #3 has to say about it, take it all in, and then try to make the right decision for me.

(Not upset at your questioning, Linda, just venting and ranting....)

 

[laurabelle]

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

Melissa- I think we all appreciate your candor. I for one don't want anyone "blowing sunshine..." I think you handled the situation well. There are plenty of women who wait or never get reconstruction. Have you ever heard of Lillie Shockney? She's pretty much the head breast nurse at Johns Hopkins, among other things, and she's also a bc survivor. I met her several years ago and she was telling me how she did not want reconstruction, even though she works at one of the top hospitals in the world, and had her own "Betty" for years. Eventually the right time and a skilled PS all synched up. I think she had the DIEP flap, she's happy with it. Not that I'm trying to talk you into anything, just to let you know you're not alone.

Dawn- I'm sorry you were treated so insensitively! Why in the world would he think you would want to be his patient??? grrrr

As far as SNB goes, I basically had a lumpectomy (surgical excisional biopsy) to remove my tumor, but the margins weren't clear, so I had the SNB done at the time of my re-excision. Then I did chemo, then I had bilateral masts. I always had the option of no masts and radiation. I had to defend my position to my doctors who tried to talk me out of my decision to have both breasts removed. I know it seemed like "over treatment" to them but I felt strongly that is what I needed, and they really couldn't argue with that. I hate that I had to make that decision, I did not take it lightly, but I feel like I made the right decision for me.

It has also been my experience that PS's will recommend the type of recon. they are familiar with. It doesn't make sense to say lat. flap wouldn't work without an implant, as the purpose of the implant is to add size when there is not enough tissue. The website I sent you last night also has a lot of info about reconstruction and recommendations for surgeons if you can stand it.

I know all of this is made worse by the sense of urgency and possibly delaying treatment. Hopefully all the meetings you have next week will make the decisions clearer. I'm praying things line up soon and you feel confident that you're in good hands and getting exactly what you need to be healed and whole.