Need some input please - biopsy came back positive

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Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/9/2006 1:04 AM (GMT -7)   
Okay, just got the news yesterday that my biopsy was positive for invasive ductal carcinoma. I knew I was in trouble when the surgeon's office called me, as before they had said I should wait until tomorrow to call for my results. (That woman must hate her job!) My husband was away in the Utah mountains with no cell service and I pretty much wigged out for half an hour or so. I did manage to catch him at a meeting though and he hurried right back home. Longest four hours I ever spent in my life.
 
Anyway, I met with the surgeon today and he seemed pretty positive. My cancer is "well defined" and under 2cm and he could not feel any lymph node cancers with an external exam. (Of course we will have to wait to find out from the sentinal lymph node biopsy to be sure.) He said I had two choices, mastectomy or lumpectomy, but based on the fact I am so small breasted to begin, he thought mastectomy was probably better.
 
I know there are plenty of you out there that have been there before me, so I am looking for help here. What are the pros and cons of each procedure from your real life experiences? I think if I could have my druthers, they would just put me to sleep and I would wake up with a new boob on one side and an "enhanced" one on the other. (I figured if they are going to have to work on me any way I might as well get some benefit out of it?) My doctor did say they seldom do reconstruction during the initial surgery in their practice - seems to be mostly a scheduling thing between them and the plastic surgeon. But wouldn't it be better to cut down on the surgeries you have to go through?
 
And of course if I do go the mastectomy route, do I get implants or let them put part of my butt on my chest? :) The thing that bothers me most about a mastectomy is losing my natural nipple (I know that probably seems pretty stupid, but that's just how it is.)  I think I could manage to get through the lumpectomy and the radiation that goes with it to keep the nipple, but I am sure I would still probably need reconstructive surgery.
 
The next thing is chemo, which we did not really cover. Will I need chemo and radiation after the surgery if the cancer has not spread? What other treatments can I expect to go through? And I have heard two different theories about when to get a pet scan. My surgeon today said after the surgery is fine but others have told me their surgeon did it beforehand?
 
This is all very new to me and in between bouts of feeling like a 200 pound gorilla is sitting on my chest with his 100 pound brother sitting on my throat it all feels kind of surreal. We have no history of cancer at all in my family and somehow I just never thought about it happening to me. I was always the healthy one. Help? What questions should I be asking? I guess I have to decide in just a few days?
 

Candy
Veteran Member


Date Joined Jul 2003
Total Posts : 1294
   Posted 11/9/2006 6:43 AM (GMT -7)   

Vegas,

I am so happy you found this board.  We are a bunch of women that have experienced the diagnosis of breast cancer and we all want to help you and support you as you take your journey to wellness.  First, it is not a death sentence.  You will find long term survivors here. Second, take a deep breath and take it a day at a time, a decision at a time, a procedure at a time. 

I decided to have reconstruction started immediately.  As soon as the surgeon was done with the mast. the plastic surgeon come in and started tissue expansion to support reconstruction (My nipple was reconstructed and it really looks normal.)  Presently, I honestly would wait to make that decision.  You can always consider reconstruction later.  Later would have been better for ME.  Too many decision that had to be made quickly.  Reconstruction is a decision that can go into the "make it later" column if you are feeling overwhelmed.  Your type of reconstruction surgery is only your decision.  Do as much research as you can and ask lots of questions.  Do not make a decision based on others opinions only.  Those opinions can play a part, but each of us are different.

As far as whether to have a lumpectomy or mast.  My thought is do what is the most favorable to get rid of the cancer.  If a mast. is what you decide, it is only a boob vs. your life.

I may be wrong but I do not believe that anyone here will be able to tell you positively about chemo and rads.  Each of us are different as are the doctors that we employ.  Someone here will be able to guide you through their experience with your type of B/C. I had a very rare type of B/C and a mast. was the only treatment.  No chemo or rads.  I have been cancer free for three years and during these three years I have been blessed with better health and all my new Breast Friends.  The women here are wonderful and I would not have done as well without them.  Please lean on us. 

Now, push that gorilla off your chest.  It will be hard, but you can do it.  Remember knowledge is POWER (the knowledge adds strength as you KNOW what you are fighting) and you need to do as much research as you can.  As you research you will develop many questions.  Write them down and then ask them!!!!  Take a recorder along with you so that you can re-listen to what the doctor is saying to you.  Take someone with you so that they can support you and listen for you.  Ask for copies of all your test results and pathology reports.  You may need them if you ever have to change doctors.  They also help you research and learn. 

I will pray for peace and guidance in your decision making process.  Blessings to you.

Candy


Two are better than one, because they have a good return for their work: if one falls down, his friend can help him up.  Ecclesiastes 4:9-10
 


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 11/9/2006 8:03 AM (GMT -7)   

Hi Vegas-

Do you have a real name we can call you by? If not, Vegas is fine... Sorry you got the dreaded news, and whatever you feel is right...with all you have going on, don't fret about whether your feelings are valid or vane or anything else. Yes, I remember those days too, feeling like I was in a bad nightmare and could not wake up, very surreal and very frightening. Well November 30 marks my 7 year anniversary of that day that changed my life and I am thrilled to say I am still cancer free! I was diagnosed right before my 31st b-day with no hx of cancer either, it was quite a shock to us all.

As for your decisions, take your time. Don't feel you have to decide in just a few days, unless they tell you that it is so aggressive you have to act fast. MOst will tell you to take your time and research and go for a second opinion and think about what is right for you. No answer is right for everyone.  I think a 2nd opinion would be great, perhaps they will offer you a more definitive answer.

I was offered a choice of mast vs lumpectomy, and had 2 surgical opinions plus 2 oncs,  and 2 rad oncs, all supported the choice for me and that I had equal survival rates. I chose a lumpectomy. I was told that once you make a decision, don't look back....I did consider a mast about a year or 2 after treatment, but decided against it. Don't forget, you can have a mast later but it is irreversable.

As for chemo and radiation..it will depend on the specifics of your tumor pathology. Mine was 2.5 cm and grade III, chemo was not an option, but mandatory. Radiation was also mandatory for me since I had a lumpectomy and negative nodes. All that will depend on your node status, size and traits of the tumor and your surgical choice. Some people with a mast get rads too.

I would explore all the options, get more info and keep asking others who've walked the walk. This is a whirlwind of a time right now, there will be lots of new information and lots of doctors. COnsider taking a tape recorder to your appointments so you can ask what you need to and not have to worry about taking notes.

And stick around, we're here for you!

Lori



Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/9/2006 8:53 AM (GMT -7)   
Hi Candy and Tavish,
 
My name is Diane and I have cancer and a whole bunch of questions. (I have done a ton of reading online and of course scared the you know what out of myself.) But haven't been able to sleep more than 2 hours for the past three nights anyway. And I will absolutely go out and get a tape recorder this morning. I am supposed to meet with a nurse at the breast cancer center later today who is a survivor herself and she is going to try and help me through this as my coach.
 
I do think I can handle this whole thing better if I start reconstruction right away. To me that is something positive to focus on and at least gives me the illusion that I am in control of something? And I think I would probably choose implants rather than another part of my own body just because of less surgery to the body? Though I am looking for input from those who have been there on that one!!!
 
Also I read an article that said implants may possible actually help prevent a new cancer because they help inhibit estrogen? Anyone know anything about that?
 
Okay - here is a tough question that has been gnawing at me all night and I really couldn't find an answer anywhere online. Can I still reasonably expect to live a healthy normal life to 90 or 95 if the cancer has not spread yet (I am 53 now) and shows up nowhere else? My grandparents lived that long (of course no cancer) and my parents are still alive - my mom is 81 and takes absolutely zero medication. Or does just the fact that you get cancer automatically shorten your lifespan?
 
What about skin saving mastectomy? Has anyone had that? How is it different from a lumpectomy or regular mastectomy? Do you take radiation with SMM?
 
What are the negative side effects of radiation in a lumpectomy?
 
Even if it is not necessary, is it better to have chemo anyway? Will it reduce the chances of cancer recurring in breast or elsewhere in the body if you go ahead and have chemo?
 
Sorry I am babbling and rambling all over the place here. But I so appreciate the help. And I like the phrase very Breast Friends very much. I hope to be a good friend to all of you!

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 11/9/2006 10:49 AM (GMT -7)   
You CAN expect a normal and healthy lifespan! Longevity runs in my family, my grandmother is 100! If the cancer is removed and never comes back, to my knowledge, there is no reason it should shorten your lifespan, if it is caught early and does not recur.

I had no negative effects with rads. My tissue is tender, even over 6 years later. There is a risk of heart or lung damage, and some people do develop burning or skin problems that would presumably be temporary.

I would suggest that you print out those questions and take them with you to the next appointment. Control was key for me too, I did not let the disease control me.

Keep your fighting spirit and quest for knowledge! Read as much as you can tolerate, if it becomes too scary, walk away for a while. Stats are just a way to try and predict things, they are not absolute for any one person.

Hang in there!


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/9/2006 6:55 PM (GMT -7)   
Went and talked with the RN who is going to be my coach through all this. She's great and what a relief to have someone to talk to who understands exactly what I am feeling as she is an 11 year survivor. I am usually such a positive person that it is weird to be sitting there talking and just have tears rolling down my cheeks. But the talking really does help even when I don't like any of the answers I am hearing. I guess once I get a plan together this will be a bit easier - yes? (It's okay to lie to me and tell me yes!) 
 
Pretty much have made up my mind to have a mastectomy - what seems to be a huge problem is getting the plastic surgeon in at the same time. My health plan only has one plastic surgeon in the area and evidently he likes to do his reconstructions afterwards. So now I am going to have to convince him to do it at the same time somehow. The other trick will be to get him to do it quickly so I can get through the surgery and  on to recovery. If I had my way we would just go do it tomorrow.  Why does everything take so long?!! Any ideas on how to hurry the process along a bit? 

babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 11/9/2006 9:19 PM (GMT -7)   
Diane,
 
Hi and welcome to the club we all didn't want to join.  I can relate very much to what you are going through.  I was diagnosed 2 years ago with invasive ductal carcinoma also.  Mine, however, ended up being not well defined and actually scattered throughout the breast.  The main tumor was 6cm!  I had one involved lymph node, so I am lucky it didn't get any further.  I had a lumpectomy first, because I'm large breasted and the surgeon said the outcome as far as survival would be the same.  However, when he did the surgery, he found other spots, so 3 weeks later, I had a mastectomy.  It really was a much easier surgery than the lumpectomy/lymphadenectomy. 
 
I thought at the time that I didn't want reconstruction, but after wearing a prosthesis for a year, I decided to do a TRAM flap reconstruction and am very happy I did.  My plastic surgeon is great and I'm happy with the results.  I'm actually more happy about the tummy tuck you get with it.  LOL  The thing I regret is not knowing about the skin sparing mastectomy/reconstruction at the time of my mastectomy.  Had I known about that, I might have done that.  I was in a daze during that time and was scared, so I don't think I was in the right frame of mind.  These ladies helped me every step of the way and were a great source of information. 
 
I really like your positive attitude.  That's what helped me get through this whole thing.  My onc said that was the VERY important factor in a person's recovery.  Good luck and keep us posted.
L & H,
Kathy


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/10/2006 4:17 AM (GMT -7)   
Hi Kathy and Dolly,
 
I can tell you that after what I have learned the past few weeks, every woman on this forum is my absolute hero! I cannot believe what an ordeal this all is and how much anxiety you go through. The gal in the office next to mine is just getting her hair back in after her chemo, and her attitude is amazing so I am going to hang out with her as much as possible. I have been telling my husband for the past couple of years I really wanted to kind of retire - guess you always do have to watch what you wish for!!!
 
I guess I am lucky that I can kind of pull back and not go to work if I want for the next few months (I am self employed). I usually work 80 hours a week - I am kind of an all or nothing kind of gal, so I think it is time to be all me for a change. I am going to use this time to get in shape and start exercising as much as I can, get a facial now and then, read all those books I have wanted to read, plan some trips for next fall, take some golf lessons, start knitting again, etc. I am blessed with an amazing husband, great kids and awesome friends that all want to help me through this so I am going to try not to complain too much. (Now if I can only keep up this attitude while going through the surgery and the chemo!)
 
Kathy, I am so happy you liked your plastic surgeon and the type of reconstruction you did. After more research today, I have found that despite my complaining about the extra 10 pounds I have put on in the past couple of years, there is probably just not enough of me to go around and I was uneasy about additional surgery anyway. So I will probably go with implants which was my initial thought. Now the only question is, silicone or saline and how big to go?!! I feel so bad about putting my poor husband through all of this, he ought to get something good out of it (though he said he absolutely does not mind if I don't even have a reconstruction - he truly is a gem not to mention a hunk and I know how lucky I am there.)  He watched both his mom and dad die of cancer within the same year ten years ago. Then out of the blue 5 years ago he was diagnosed with adult onset juvenile diabetes - we had been so worried when all of a sudden he had no energy and was losing weight like crazy and we were so happy when we found out it was not cancer, and now this. We have been monitoring him for cancer the entire time as so many of his family members have had it, and then it ends up being me getting it. God has a very warped sense of humor.
 
 
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