Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

Kelly- After I was dxed, I always said, Faith, Family & Friends, Attitude and Sense of Humor were what got me through it! I'm glad to see that in you!Hopefully someone here from FL can help you with finding a a new doc when you move (when is that?) In the meantime, I would Google Cancer Centers Tampa and see what pops up. I have no experience with rads...do you think that's what will be recommended?

MinnieM3- I would look on this next month you have as one more month to heal before the school craziness starts! I hope that gross side gets better!

MerryPoppins-Congrats on the PAP!!! That's pretty crazy about your hubby's mom! How does he feel about all this???

 

[Disney Debbie]

DD called us from Germany yesterday and guess who she saw???

She was right on the starting line in Phuttzheim(have no idea if that's spelled correctly!) and was cheering on Lance Armstrong! She got some great pictures of him. I had no idea the Tour de France goes to Germany!!?? Shouldn't it be the Tour de Europe???

Anyway - thought that was really cool!

Glad to hear everyone is getting good news(relatively speaking!) I had my first Herceptin since last October yesterday and have definitely decided on another port! The tech is just so nervous about finding a vein on me - I only have one arm she can use and they always have trouble finding a good one anyway. She got the RN to come in and while she did find it the first time - she didn't give me a warm fuzzy feeling about it!!

So - my first port was in a really bad place on my chest above my right breast. I now have an ugly scar there and it's STILL very sensitive. Any ideas on some better places to have a port????

 

[mickeymost]

We close on our house here (in NJ) Aug 15. We are set to close on the house in FL on Aug.17. Hope all goes smooth in between now and then. I really don't need any more stress.

When I spoke with my Onc. he said as long as the Nuc and CT tests he will be sending me to do (again) come back normal he is recommending radiation only. He really doesn't want to put me through chemo again. Because it is a local recur. he said radiation because my Rad Onc said he would radiate a small portion of the breast that was newly affected. I just hope that a Dr in FL feels the same way. Once you have radiation, they usually will not radiate the same area, but my Rad Onc here feels confident that it will be okay. There are diff types of radiation they can use also, so it's not what I had before.

On the bright side, the infection is getting better by the day and the Plast Surg is hopefull I can keep the implant.

Have a great day everyone New day, has got to be better than yesterday!

As I have said since first diagnosis. Live everyday to the fullest!

Kelly

 

[laurabelle]

Debbie- I can relate to the vein/blood draw issues. My port was in my chest. I have friends who have their's in the inside part of their upper arm. How cool for your dd! I hope you get to post some of those Lance pics!

Kelly it sounds good! I hope you're getting lots of help with the move and everything else so you can concentrate on healing and preparing for the next treatment.

 

[Laurajean1014]

Well, I heard from my surgeon and my internist........

I have cancer. DCIS to be exact......

I meet with the surgeon tomorrow for a consultation and options...

If any one has info or experience on what to expect, I would greatly appreciate it.

 

[Disney Debbie]

Laurajean - so sorry to hear that - but DCIS is one of the MOST curable - in fact Dr. Susan Love's Breast Book calls it "pre-cancer". My best friend just had it and she had a double mast. at HER insistence(her mom died of BC 15 years ago and she's got anxiety disorder) but her Dr. just wanted to do a lumpectomy. Another friend of mine just had a lumptectomy and radiation and is a 6 year survivor now.

 

[Laurajean1014]

Debbie - thank you for your comforting words.

I have lots of questions, and want to see the surgeon with educated questions, so I can get progressive answers.

Some questions I have are:

What are my options for DCIS? I have no problem with surgery (in fact, get it out). But what about the radiation? Are there other options? Does this type require medications?

 

[Amy]

Laurajean - I'll be keeping you in my prayers. Hang in there!

 

[laurabelle]

((((((((Laurajean))))))))))
I'm so sorry for your bad news... I know I keep on posting this website, but it's one of my favorites, very informative and easy to read. I'm sure you'll find DCIS info on here: www.breastcancer.org and of course you can ask away here too. I do know that if you only have DCIS, there are 2 typical options, mastectomy or lumpectomy and radiation...depending on how diffused it is through the breast and of course what you would like to do. Chemo is not used in the treatment of DCIS as far as I know. Then you may follow up with Tamoxifen or an aromatase inhibitor (depending on your menopausal status) if your cancer is hormone receptive. You've caught it very early, that's a big plus in your favor!

 

[laurabelle]

Laurajean - so sorry to hear that - but DCIS is one of the MOST curable - in fact Dr. Susan Love's Breast Book calls it "pre-cancer". My best friend just had it and she had a double mast. at HER insistence(her mom died of BC 15 years ago and she's got anxiety disorder) but her Dr. just wanted to do a lumpectomy. Another friend of mine just had a lumptectomy and radiation and is a 6 year survivor now.

Debbie- it's actually LCIS that is considered to be pre-cancer...

 

[snappy]

Debbie - thank you for your comforting words.

I have lots of questions, and want to see the surgeon with educated questions, so I can get progressive answers.

Some questions I have are:

What are my options for DCIS? I have no problem with surgery (in fact, get it out). But what about the radiation? Are there other options? Does this type require medications?

Sorry to hear your news. I know how much of a shock it is to get this call.

With DCIS, if there is no invasive component, my understanding is that you do not have to have any lymph nodes removed. This is a BIG DEAL, once you have lymph node removed you really have be on guard to avoid infection, mosquito bites, burns, overheating, tight jewelry, over use of hand and arm, etc. I doubt that you will need chemo either. My understanding is that regardless of the size of the DCIS tumor, no chemo is advised, whereas with an invasive tumor even as small as 1 cm, chemo is routinely given.

Another thing with DCIS, if you have the tumor in more than one quandrant of the breast (multifocal or multicentric) a lumpectomy is not an option as too much tissue would need to be removed in the process. Also, I think it depends where the DCIS is, if it is under or in the nipple, I don't think you can really save the breast. The surgeons like to get clear margins and more than one area becomes a problem. My second opinion doc told me last year that there is a study being done doing lumpectomy on women with multifocal
tumors but that the study was small. She did mention it in case saving the breast was a big concern for me. However, it apparently is the standard of care with multifocal tumors is the mastectomy.

If you do have a lumpectomy I believe you are always given radiation.

As far as medicines, if the tumor is hormone receptive, you will probably be advised to take adjuvant hormonal treatment, like Tamoxifen or Aimidex to reduce both local recurrence or a new cancer.

I think you are wise to educate yourself as much as possible before seeing the doctor again. I also spent a lot of time researching surgeons and hospitals. At one point I think I was more worried about which surgeon and hospital I would end up with than the cancer itself, especially since I knew I would opt for the mastectomy. Making a decision can be the difficult part.
Good luck and please let us know how you are doing or come hear to vent whenever you need to.

 

[LoveWDW]

Laurajean, you are in my prayers, hang in there.

Hello, Everybody! Pea-n-Me invited me to join in here following a PM I sent her a week or so ago. I felt too shy, since I was new to the site, but I am feeling pretty comfortable here now so thought I'd post my story.

I am an 8 year survivor of breast cancer. Both sides. Multiple locations, so lumpectomy was not an option. Double mastectomy. Trans flap reconstruction at the same time. No radiaton or chemo needed since the cancer was in situ, even though one side was aggressive. I have trouble replacing blood (have to donate on a Friday so I am able to go to work on Monday) so found the blood loss during the reconstruction took me a long time for recuperation. I decided to go with immediate reconstruction because I knew that I would have a terrible time dealing with "nothing there." The reconstructions are living tissue, and they look and feel like a normal breast, even to nipple reconstruction. Not as good as the real thing, but I am more comfortable, anyway.

A couple weeks ago I found a sudden and large mass on the chest wall. After a week of worry I went to my surgeon who confirmed that it had not been there 2 months before at my regular checkup. He felt that it could be cancer so I had surgery two days later. Thank goodness it turned out to be scar tissue, not cancer, no idea what caused it or what caused it to get so big so quickly.

So, there you are. Good luck to all of you who are survivors or who dealing now with cancer. and ((hugs)) to you.

 

[MerryPoppins]

Hi LoveWDW and welcome. Glad it wasn't cancer. What a scare.

Laurajean, I also had DCIS. I've been cancer free since the fall of 2001, so almost 4 years. I had a mastectomy because that was what I was most comfortable with. They couldn't be sure that they could get all of it any other way. The ducts are not visible and I had cancer spots in more than one area. I was just afraid because they told me it was an aggressive cancer. I felt like the cancer was a time bomb and I wanted it all out.

I didn't have to have radiation or chemo. I had clear margins. They did take one lymph node and it was clear. I do take Tamoxifen. I started reconstruction, but the expander burst and I opted to remove it. I'm very comfortable with the new me. I also had a reduction of the other side, which I'd always wanted to do. That was the bonus of the whole cancer ordeal.

I'd be glad to answer any questions you have. PM me if you need to talk. I'm living a hectic life this week, but I'll answer as soon as I see your message.

DH is doing fine with the new family situation. He grew up knowing he was adopted. He says he has two mothers that loved him. One that loved him enough to give him a better life and another that loved him enough to bring him into her life and care for him like she was his own. His birth mother sent pictures today and said she wants to come meet us in September. Until then we'll exchange information and get to know each other long distance. His brother is coming for a visit this weekend, so I'm cleaning. Life is busy, busy, busy.

 

[laurabelle]

LoveWDW-I'm glad you're here! Doubly glad that scare was nothing! I had a scare in my scar line too, ugh!

MerryPoppins- I love your Dh's attitude! I hope you have a wonderful visit with his brother!

 

[Pea-n-Me]

laurajean and another
If you read back to when NH Ann first came on this thread you can follow her story - she had DCIS I believe and though it's been a difficult journey for her, she's doing well. I'm sure she'll be on tonight to give you some words of wisdom.

I know we keep talking here about "good news" in the face of some hard diagnoses, but in the breast cancer scheme, DCIS has very good survival odds which is something to be glad about. However, hearing you have cancer even when you have a "good" situation you find yourself in a whole new world, one you never dreamed you'd be a part of. And none of us, even the ones with the "good" cases, are truly ever out of the woods, which continues to be a sobering thought as you move along in your journey with this disease.

We'll be here with you as you begin your journey and someday you'll be sharing your experiences with others to help them. Keep us updated with how you're doing, OK?

 

[Pea-n-Me]

LoveWDW, glad you made it over! Yes, that lump story is pretty scary. It must feel pretty good to be 8 yrs out!

Kelly, sounds like things are going well for you. I admire your courage.

Merry Poppins, interersting story about your DH. What a great attitude he has! I love his way of thinking and I agree with him. Just last night I worked with a young woman who is thinking of trying to find her birth mother. Her adoptive mother is dying right now so the timing isn't right, but she has the information she needs so it's just a matter of going to town hall and getting her birth information (which is readily available due to a change in laws in her state) and seeing if her birth mother, who was 16, wishes to see her also. I can't imagine how emotional that would be.

So I saw my oncologist today. The battery of tests I've had on my abdomen have all been exceedingly NORMAL thank God but we still don't know why I have pain. I really don't care as long as I know everything's alright, and it really hasn't bothered me much lately. I had a nice visit with her and she was happy to see my spirits have improved since our last visit. I feel like I'm finally in a pretty good place since all this began.

As an FYI, we spent much of our visit talking about IMMUNOSTAINS, LOL (what nerds)! She explained it that immunostains are just another method of looking more closely at things. As we knew, things like ER/PR and HER2 neu status are the "old" immunostains. In the "new" immunostains they are trying to look at "more" with "less" - i.e. checking sentinel nodes for evidence of micrometastasis in nodes that would otherwise appear to be negative. It just gives them more information for prediction of outcome and therefore treatment options. I guess we'll be hearing a lot more about them so stay tuned.

 

[snappy]

As an FYI, we spent much of our visit talking about IMMUNOSTAINS, LOL (what nerds)! She explained it that immunostains are just another method of looking more closely at things. As we knew, things like ER/PR and HER2 neu status are the "old" immunostains. In the "new" immunostains they are trying to look at "more" with "less" - i.e. checking sentinel nodes for evidence of micrometastasis in nodes that would otherwise appear to be negative. It just gives them more information for prediction of outcome and therefore treatment options. I guess we'll be hearing a lot more about them so stay tuned.

Thanks for posting this. I always wondered how "accurate" the pathology was on the lymph nodes, particularly when you are looking at micrometastasis. Like maybe we are foregoing chemo because our cancer isn't "serious enough" to warrant it but in reality the chemo would help because cancer cells, even though minute, have made it to the nodes.
Have you read about this somewhere? I wonder if the tests could be done after the fact. My understanding is that the pathology slides are retained.

Glad your tests were negative and that you are in less pain. Good news all.

 

[snappy]

I also wanted to post about a shirt my DH bought me at Academy Sports this week. It is made by Columbia, he actually bought me the long sleeve which I returned for a short sleeve. It is made out of very soft cotton and has large sections of mesh sewn in under the entire upper back section as well as on the breast pockets. It is a woman's shirt and comes in some nice colors (I got the soft pink one). He know how much I have been suffering with the heat and the hot flashes so I guess he had been keeping an eye out for something like this. I think it is designed for outdoorsy types who fish, golf etc., but it is also perfect for my purposes. I even bought a second one that is actually made of nylon and is treated for SPF. It is also a pretty aqua color.

Just thought I would give the ones of you suffering from medical menopause a heads up on this. I am always looking for items to help with the heat. I really want a new nightgown or PJ's but I don't want to pay the cost of the set I saw on Nordstrom's web site.

 

[snappy]

Laurajean, you are in my prayers, hang in there.

Hello, Everybody! Pea-n-Me invited me to join in here following a PM I sent her a week or so ago. I felt too shy, since I was new to the site, but I am feeling pretty comfortable here now so thought I'd post my story.

I am an 8 year survivor of breast cancer. Both sides. Multiple locations, so lumpectomy was not an option. Double mastectomy. Trans flap reconstruction at the same time. No radiaton or chemo needed since the cancer was in situ, even though one side was aggressive. I have trouble replacing blood (have to donate on a Friday so I am able to go to work on Monday) so found the blood loss during the reconstruction took me a long time for recuperation. I decided to go with immediate reconstruction because I knew that I would have a terrible time dealing with "nothing there." The reconstructions are living tissue, and they look and feel like a normal breast, even to nipple reconstruction. Not as good as the real thing, but I am more comfortable, anyway.

A couple weeks ago I found a sudden and large mass on the chest wall. After a week of worry I went to my surgeon who confirmed that it had not been there 2 months before at my regular checkup. He felt that it could be cancer so I had surgery two days later. Thank goodness it turned out to be scar tissue, not cancer, no idea what caused it or what caused it to get so big so quickly.

So, there you are. Good luck to all of you who are survivors or who dealing now with cancer. and ((hugs)) to you.

Welcome to this thread, LoveWDW. Pea-n-me is a dear for telling you about it. For me it is so helpful to hear other people's stories, I feel less isolated.
I do not have any close friends living with this, I only have the ladies in my BC support group that I joined maybe six months ago. Glad you scare ended up being nothing. Even when it turns out like this, it does take a toll on your sanity though.

 

[Pea-n-Me]

Thanks for posting this. I always wondered how "accurate" the pathology was on the lymph nodes, particularly when you are looking at micrometastasis. Like maybe we are foregoing chemo because our cancer isn't "serious enough" to warrant it but in reality the chemo would help because cancer cells, even though minute, have made it to the nodes.
Have you read about this somewhere? I wonder if the tests could be done after the fact. My understanding is that the pathology slides are retained.

I deliberately try to not read a lot about cancer. Being a nurse and working with critically ill and dying people, I find it causes me to worry too much about my own situation. The first I heard about immunostains was the other night right here on this thread! The reading was extremely medically complicated, even for me (and I enjoy reading medical literature). My doctor explained it in simple terms today and I know others here were interested so that's why I posted. I hesitated, though, because I didn't want people to have doubts about the accuracy of their original diagnosis since when researching this the other night I found myself asking those same questions (though I did have one positive node so got extra chemo because of it anyway).

If you do a search of immunostains online you can read some studies they're currently looking at on accuracy of node status at the time of diagnosis. They're fine-tuning the sentinel node procedure but to me it looked pretty good as far as accuracy goes. I believe I saw somewhere it was a fairly small percentage of cases where nodes did in fact have micrometastasis. I guess you have to ask yourself even if you were to look at your old stains, what would that do for you at this point? Would it cause more worry? I think as time goes on we're going to see more and more advanced treatments which is great but ones that we ourselves may have not been privy to. We have to make the best decisions with the information and technology that's available at the time and not second guess the decisions we made at the time in order to keep our sanity. I think we all agree that we all have to be monitored closely regardless. Of course this is just the way I think about it. Any thoughts from othes on this?