Jane, I've been thinking about you...

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barkyboys
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   Posted 10/13/2009 4:55 PM (GMT -7)   
Just wondering how you are doing and how things are going for you.

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
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Date Joined Jun 2009
Total Posts : 285
   Posted 10/26/2009 9:11 PM (GMT -7)   

Hi Bev, been doing pretty good. Had my surgery and reconstruction 10/06. Very little pain, stayed three days because my BP was so low. 80/45

Saw my surgeon 10/20 pathology report came back and there was cancer in the back margin. She said she went very close to the fascia hoping she got it all...it was in the muscle on my chest wall,  she can go back and take even more or I can hope the radiation will get it...decision is up to me.

I asked her if she would be able to find it since I had reconstruction at the same time. She said she knows where it is.

What should I do ?? opinions from members will be a great help to me please feel free to share...will see her 11/03 and give her my (our) answer.

Jane

 

 


gma
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   Posted 10/27/2009 6:53 AM (GMT -7)   
What a choice! What kind of reconstruction did you have? I don't believe I would want to trust radiation and or chemo to get it. I think I would ask more about the path report and what kind of cancer. Some are more aggressive than others. Maybe even another doctor's opinion might help. I know the chest wall was a concern when my daughter had her mastectomy and they thought they got it all. She had recurrence eight years later and that was nearly three years ago. She is still working and doing as much as she can even having chemo weekly. She rests a lot more and is in pain, but she keeps trucking along. Let us know what you decide. Big hugs MK


mcjane
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Date Joined Jun 2009
Total Posts : 285
   Posted 10/27/2009 11:50 AM (GMT -7)   
I have a copy of the pathology and surgery report.

My reconstruction was a breast lift, much needed and delighted with the results, and my cancer is (stage 2A) IDC started in the milk ducts, HER-2 NEU, estrogen + 100% progesterone + 60%
Left Sentinel node and one other node-negative.

Reading the operative report I can see that the tumor was near the left nipple so it's confusing to me as to why there was cancer found in the posterior margin on the chest wall. The tumor was 2.2 cm and the specimens taken were 5.5 cm. 3.5x2.1x0.7 cm. 3x2x0.8 cm, 1.5x1x0.3 cm, 5.5x4x1.5 cm.

MK here's what I don't understand. Before my lift my breasts were sagging very low and now they are back where they would be if you were 20, so if the cancer was near the nipple as noted in the surgical report then how could it be in the muscle which was at least 7 to 8 inches higher???

Probably more info than needed and I don't really trust radiation or chemo either.

Talking to another doctor would only confuse me and I think since the decision is surgery or rads & chemo it's a pretty easy one to make. Besides I honestly would rather ask members who have lived with BC than ask a doctor for an opinion. It's not a life or death decision and maybe one is as good as the other, but I'm leaning towards removing it.

I remember the doctor saying that the tumor had grown finger like tenticals into the muscle and that is the cancer that is still there.

Tavish
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Date Joined Jul 2003
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   Posted 10/28/2009 5:15 PM (GMT -7)   
Jane, I think you just answered the question....cancer does not grow in a round neat ball, but rather it gets spicules or finger-like extensions. When they tell you the dimension of 2.2 cm, that means the largest part. So it may have invaded farther back than you can realize.

I had one margin that was close and all the docs I saw (2 medical oncs, 2 surgeons, 2 rad oncs) except for one said to go back and get that margin till it's clear. THey said the chance of recurrance was much higher if I left it. I had a re-excision and let them take another chunk of tissue out, and my cosmetic result is still decent. I am lopsided, but I don't mind that much. My advice to you is get another opinion and ask the doc what he/she would do if it was his wife/ herself.

Size is not the only indicator here, the fact that you were Her 2 negative and ER/PR+ are good traits to have, and it might influence the doctor's recommendation.

Stats are just stats, and for YOU it is either cancer or not. But I would ask about the stats for recurrance if they leave the margins alone and trust chemo/ rads or if you get the extra surgery. Would surgery increase your odds of staying cancer free by 2%? 10%? Once you make your decision, go for it and don't look back. Trust your instinct and feel good about your choices and ability to take control.


Glad surgery was easy, as far as surgery goes.


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 10/29/2009 9:27 PM (GMT -7)   
Hi Tavish,
Spicules, just could not come up with that name and I remember the doctor saying it. Sounds so creepy a cancer crawling from behind your nipple to your chest wall. Seems these spicules do not show up on a mammogram.

I don't think I even care about a second opinion since I want the cancer out asap.
My doctor said the decision was up to me so what I'm getting is she thinks either way is good, but I think removing it is a head start.
I also thought about 5 out of 6 of your doctors told you to opt for surgery. How could you do otherwise than go for it.

I expect the results from my Oncotype DX test to be back by my next visit 11/3 and that should tell my onco just what kind of therapy I need and it could even be none at all except radiation. It can also tell if I need hormone and chemo as well as the likelihood of my cancer returning.
You can check it out at www.oncotypeDX.com

Even though I have made my decision with the help of your input and MK's I will ask for the odds.

Thanks so much for your opinions....means the world to me. After I start treatment and become a 'veteran' I hope to be able to share what I've learned with new posters.

Feeling sorry for BC ladies that don't know about HW.com Your opinions have meant everything to me kept me very positive and worry free.

BTW MK & Tavish are your cancer the same as mine?

Jane

gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 10/30/2009 6:40 AM (GMT -7)   
Jane I was diagnosed thirteen years ago and believe me there have been many advances in that short time. My tumor was readily seen in the mammogram and the spicules were very visable, too. It was only 1/2 in in size and was very early stage, so I had no other treatment besides the mastectomy, which makes me feel in retrospect that I could have had a lumpectomy and radiation and been just fine.

My daughter's tumor was larger and was near the chest wall which was a concern of her doctor's. So I am assuming everything should be done to have free margins on that wall.

Good luck and prayers, MK


barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 10/30/2009 4:45 PM (GMT -7)   
I vote for clean margins.

Okay, I was young when I got cancer, and my breasts were not large to begin with, so I'm going to ask a silly question. If you lay down on your back, doesn't your breast tissue kind of fall back into its "proper" place? So the tissue under the nipple would be under the nipple, not really inches below. I know that sounds funny, but honestly, I don't know how else to put it. I know they say if you want to know what you would look like with a face lift, lay down on your back and look at your face in the mirror. Can you apply that same idea to a breast lift??? Anyway, I think that could explain why the tumor was close to the chest wall, and yet under the nipple.

By the way, did I say I vote for clean margins? In case I didn't, I vote for clean margins!

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 10/30/2009 10:13 PM (GMT -7)   
MK the spicules were probably noticible in the mammogram and I made a mistake saying they weren't. No doubt the doctor saw them because she said she went very close to the muscle fascia,but not close enough.

I have no doubt you would have had a lumpectomy and am not sure why you didn't because they were doing them then. Oh if we could only go back.

Have you had reconstruction?

BEV
Thanks for the vote...clean margins it is and glad we're all in agreement.

What your saying doesn't sound funny at all let me describe my breasts before surgery.
If you remember The Golden Girls, Dorothy, played by Bea Arthur had it right when she said when you lay on your back your breasts flatten out...and fall to the side. Well that was me. She also mentioned looking up into a hand mirror....you know Bev...face lift look LOL.

As I said my breasts were really hanging down, gravity, 2 children, age, and the nipples were at the end pointing towards the floor. I also lost 80 pounds so they were long and narrow so if the tumor was behind the nipple the spicula had to grow a long way up from the nipple about 6 to 8" to reach my chest wall behind where my breast starts.

After my lift my breasts are exactly where they should be as if you were wearing a bra and when I lay on my back they stay there, don't really flatten at all or fall to the side. I find it unbelievable the work my plastic surgeon did.

I can understand now how my surgeon can find the remaining cancer since it's on the chest wall.

Jane

barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 10/31/2009 10:46 AM (GMT -7)   
Jane, thanks for the primer on "the aging breast." it's funny, I took care of my Mom-in-law for 3 years, and I guess I just never paid any attention, even though I bathed and dressed her! Of course, she was a teeny tiny woman and never had much of a chest to begin with, so there wasn't much to notice, I guess.

Glad you're going for the clean margins. I had my "good" breast lifted when I had my new nipple put on... aren't those breast lifts amazing? After 15 years, though, I'm wishing I could have another. Definitely losing that nice perkiness. But one day this summer it was so blasted hot, our air was out in the office, and I just went in the bathroom and stripped off my bra. When I confessed to a couple of coworkers, they couldn't believe I didn't have a bra on, so I guess they're still better than most women my age.

BTW, you're right, lumpectomies have been around for quite awhile now. It wasn't an option for me for medical reasons, but I think MK probably had the option, and chose mastectomy with reconstruction. We both had TRAM-flaps. Mine was without any difficulty, other than it was very hard on my back, and I have ongoing issues with that. MK is not one to complain, butI'll tell you she had some serious complications with infection and has no muscle left to hold her abdomen in place, so she has to wear some serious binders to support her tummy, and I can assure you, those binders are not comfy! Hind sight is 20/20, and maybe MK would physically feel a lot better today had she opted for the lumpectomy and radiation.... or maybe she would have had a recurrence had she not had the mastectomy. We never know, for sure, that the decision we make is the best one for tomorrow, we can only be sure that it is the right one for the time that we make it. Personally, I think it's a crap shoot, either way! My first choice, had I had the choice, would have been double mastectomy, even though there was no cancer in the remaining breast. At the time, my doctor told me that my insurance wouldn't pay for it, and he wasn't in the business of removing healthy tissue, even if I were willing to pay out-of-pocket. If I had had cancer a few years later, laws enacted would have guaranteed me that choice, and insurance would have had to have covered it. Every time I go for a mammogram on my remaining breast, I wish that law would have been enacted sooner. Some of us would just prefer no breast tissue at all rather than face a possible recurrence! It's a very personal choice, and we all make that choice based on what seems to us the best choice at the time. I don't think "lumpectomy vs. mastectomy" is really a "good choice/bad choice" decision, but "what feels right for me right now?" And you just have to go from there and not look back and second-guess yourself. Otherwise, you could drive yourself crazy!

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 10/31/2009 1:20 PM (GMT -7)   
Bev, I was never a canidate for a tram flap and at the time wished I was because of extra belly skin, but not all that much so I was OK with just the lift. But, after what you told me about MK I'm glad I wasn't. I was also warned about possbility of infection and maybe not healing and losing the entire procedure.
So sorry MK had to endure infection, can only imagine and even worse she still has problems no doubt life long.

I chose lumpectomy because my doc said one is as safe at the other in my case

about the laws that were not inforce when you had your mastectomy a real bummer and most unfair. I don't like to be critical of your doc, but I certainly do not agree with his attitude. I don't know when the law was enacted or who pushed for it, but I am certainly glad they did and took the decision out of the insurance companies hands. I read on BC.org that because a lift was cosmetic and I might have to pay for the right lift, but I didn't.

PS... I was never a teeny tiny woman.5'2" weighed 130 lbs, went up to 210 and now back to 130 for the last year and plan to stay there.

Jane

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 10/31/2009 1:52 PM (GMT -7)   
Jane, if 5' 2" and 130# is not a tiny woman, then geez, who is? Sounds like you are in a great place. :)

You asked about my tumor. I was given the choice for lumpectomy and radiation or mastectomy and chose the lumpectomy + rads. I did chemo too. I was 30 at dx and the oncotype testing was not available then, so chemo was automatic. I was ER/PR+ (strongly +) and went on Tamoxifen for 5 years afterwards. My tumor was borderline positive for Her 2, so no Herceptin. But back then, only Stage IV cancer was approved for Herceptin. If I had it today, they would have to do further testing to determine if I needed Herceptin. My tumor was a grade III, 2.5 cm.

Since I was given a choice on surgery type and had the one close margin, I felt it was critical to get another opinion from another team. I wanted to make sure that all agreed I had a choice and no strong feelings one way or another. They all agreed which made me feel more confident in my decisions. I think it is lucky for those of us who get to make decisions (not always easy though!)...but I prefer the opportunity to have a little control over whatever I can. THere is not a lot of things we can control with cancer, so I took control of whatever I could...

Lori


barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 10/31/2009 4:21 PM (GMT -7)   
Lori is so right about having some control! And I would agree that Jane is a tiny woman, but my MIL was really a TEENY tiny woman... 4'11" (she claimed, but I would guess she was shorter), never over 95 pounds and when we got her, she was down to 67pounds. I was never able to get more than about 10 pounds on her, and every time she got sick, she dropped those 10 pounds in a heartbeat. Putting weight on that woman was a constant struggle. I wish I had that problem! No, not really. I always teased her that she was the world's oldest living anorexic.

Jane, how come you weren't a candidate for TRAM-flap, just out of curiosity. My doctor didn't have the best bedside manner, but he was an excellent surgeon. Back then, I think that would have been the opinion of most surgeons. He actually grew on me over the years, and I kind of miss my annual appointments with him. He left here to go to Harvard, and last I heard from him, he had transitioned completely into the research field. My plastic surgeon retired and moved to Hilton Head to golf. My family doctor is transitioning into hospital floor doccing, my gynocologist has just left to head up some kind of menopause organization... I've told my onc that she simply cannot retire, ever! Her hubby is a department head at the cancer center, so I think I'm safe for awhile, anyway!

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 10/31/2009 6:32 PM (GMT -7)   
Bev, funny thing when we outlast our doctors..I've thought about that...while we may hate to see them go, it is great that we are hanging around long enough to outlast our docs! Life goes on all around us, lucky for us, it happens when we're not ion as much need of them...my rad onc moved to another hospital a year or so after my tx, I can't imagine if he had left sooner. My surgeon went to head up the sarcoma clinic at Moffit, but it was years after my surgery and well after I was 'launched' out of his care.


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 11/18/2009 12:00 AM (GMT -7)   
Bev, so sorry I didn't see your question until now.

The reason I'was not a good candidate for a tram flap was because I was a recent smoker.....quit about 5 months ago.
The doctor was afraid I would have trouble healing and if I did it could cause a major problem.
Smoking constricts blood vessels and without a good blood supply to the surgical site it was a real possibility.

Would rather have what I got and that was a much needed breast lift. Can now wear a tee shirt without a bra, love it :-)

Surgery hasn't been scheduled for taking more tissue, but expect a call soon.

Of course radiation and hormone therapy haven't started and I dread them both. Not sure of the spelling, but I'll be on Arimidex for 5 years to stop me from producing too much estrogen & progesterone. The doctor told me the only side effect may be hot flashes. Did she really think I wouldn't check it out there are many more possible side effects and I'll probably end up with all of them. darn.
I wish I had just one doctor taking care of everything, but have four and it gets confusing.

My Oncotype score is 15 Scores range from 0 to 100 so 15 is good.
I have stage 2A BC...HER2 minus, ER+ PR+
I'm told it's very curable...I am so lucky.

Read an article in Cure Magazine about TNBC (Triple negative breast cancer) sounded good to me...triple negative...until I read the article. Wow, it's not good and very aggressive.
This is the Fall issue and it's free if you qualify (cancer patients, survivors and care givers qualify) loaded with all kinds of cancer info and what's up and coming in research.
You can subscribe on line. You'll probably read it cover to cover like I did. It's a full size magazine
www.curetoday.com/
or call 1-800-210-2873

Replies I received here made up my mind to go back and get all the tumor and not rely on radiation. You are all exactly right.

What would I do without you guys, it was a blessing I found you.

Jane
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