Lets get to know each other :)

Lovegolf

Yeah there are few of us who love to play golf and have been down this road.  So far my partner is responding to meds....We took it easy over the long weekend and rested which helped.  

NoH8

That's great to hear LG.... heart disease scares me a lot more than cancer.

Lovegolf

I just got back from the doctor and she did not have to drain me!!!!She pronouced that i have turned the corner. She released to the golf course..slowly.  We are going off this weekend, but I may run off the driving range one night.  Have been able to putt on green at the house, but getting back out there is the real return to normal for me....

NoH8

That's GREAT!! Do you feel like you're finally getting your life back?

Lovegolf

Yeah I do feel like I am my life back!!!!Now if I can get golf swing...No the past week many things have happened that feel like normal again.  As my doctor told me yesterday, "You penciled in 2 weeks for this..the 2 was right but it is really 2 months before you are back 100%."  Oh well i have always been an overachiever.   I can  not thank all of you here enough for listening and sharing information.  I find I check here for others who may need the same.  My doctor asked  me yesterday to be on the Susan G. Komen walk committee here.  This year was first year for a 5K walk, it was day after my lumpectomy.  So for next year i will do all I can and walk too. The walk will be on 4/17/10, exactly a year from my first surgery... Knowledge is power!!!

dswope

Hi all!

Well, I decided to go ahead with the Chemo......it was a tough one.  My oncotypedx test results put me in the medium risk for the cancer to return, and it suddenly dawned on me (duh) that there is no cure for this shit!  So, it'll be the CMF regime for the next 6 months.  The first treatment was yesterday with an awesome nurse that has been through this.  I took the first of the cytoxan this morning....so far, so good. 

Hang with me, will ya?  You all have been so much help, and I feel more welcome on this threads than some of the others.

Thanks. Deb

Lovegolf

Glad to hear from you.  Will hand in there with you, grandmother!!!

dee1961

Deb you hang in there lady! We will always be here for you.

I hope the next 6 months fly by and you feel okay through it all.

Congratulations bye the way on your new grandson  

TorchSong

Hey Deb, we are here for you!

I finished chemo in late Feb so if there are any questions you want to ask, feel free!

You can do it!

 Drink that water, is my best advice--lots of it!

Martha

lottie

Hi All, Just here to introduce myself. It took me awhile to scroll down to find this forum. I'm 51 and have been with my wife for 9 years and married for 3 here in Massachusetts. I was dx with IDC one week ago. Chances are I'll have a mastectomy of my right breast on 7/27. I'm ambivalent about reconstruction and as of today, will probably go without. Once I saw the surgeon for the 1st time she put me on a pretty fast track, biopsy that afternoon, results less than a week later and I've already consulted with radiologic and medical oncology. I feel so lucky to have all these ducks lined up so quickly. So far all the docs I've met have been really good, very informative and supportive. My surgeon is the best of all, so sharp and she's been so great to my wife as well. Now, I'm praying for good pathology after surgery. Also scared about surgery! Drains? WTF? ...

Anyway, we have 3 great little doggies, enjoy riding our motorcycles as much as possible, working on the house and the yard. We also play golf once in awhile and have some great friends.

I'm wondering if anyone has any information on the Oncotype DX test. The oncologist says it'll be really important to have this test done after surgery but some insurers deny coverage. Anyone had this experience?

Cheers and the best to all

 Lottie

dswope

Hi Lottie,

I'm fairly new to all this, however I'd like to try to help a bit.

The worst part of this stupid cancer thing for me has been the fear of the unknown.  There are lots of women on these threads that will share their knowledge with you, and it will help tremendously. 

Now that my surgery is over, and I've healed nicely, I can say to you it wasn't nearly as bad as I had anticipated.  The drains are put below the incision from the surgery below your arm pit area to help drain the extra fluids that you will have after surgery.  They are a bit of a hassle but you won't have them long (maybe 2-3 weeks).

The OncoType test helps to determine your chances of the cancer recurring after surgery.  It also helps you and your ONC decide about treatment (if any).  It is done with tissue from your breast after surgery.  Some insurors don't cover it, so you should check with your insurance co. It costs around $3000.00 if you have to pay out of pocket.

Every one of us was totally freaked out when we got the dx of breast cancer.  Being in touch with the women here really will help you get through this.

Good luck to you.

Deb

Lovegolf

Lottie

We have 4 little dog, 3 of them Yorkie..although one weighs 25lbs.  He is not fat just builld like a football player.  It does all go so fast.I had lumpectomy 4/17 then double Mx 5/1.  I feel now that I am back.  As for the drains, they are just in the way.  I found the best way to deal with them was to pin them to soft "wife beater"  (I hate that phase)  shirt up high.  It means you sleep on your back.  As far as pain, I really did nothave much. There was discomfort...hard to sleep for more than few hours without waking up.

 I did not have reconstruction. I figured I was getting cancer out and did not want to put anything else in. Please free to ask any questions I am glad to share information.The Type of cancer and whether it is hormone positivemakes difference in treatment. 

Hang in there.

dswope

Lottie,

I forgot to give you the website for the oncotype: www.oncotypeDX.com  (lots of info there.)

dee1961

Hi Lottie,

Welcome to the club you didn't want to join. I started this thread so I won't go into my details as you can read them above. I agree with the ladies that waiting and just not knowing what's going to happen is the hardest part of the whole thing. I have done the recon, only halfway done though... I have to say (for me) if I had known it was going to be as painful as is it has been, I may have made a different choice.  Once you have your plan in place it will get easier. Good luck to you, we are here anytime you need to talk. 

Dee~ 

haltsaluteatx

Hello Lottie

I was diagnosed last Oct and had bilat. mastectomy without reconstruction. No regrets. I also had a total abdominal hysterectomy 3/09. It has been quite a journey for 9 months. I finally feel I am peicing my life back together after alot of time and energy healing. I see the Oncotype DX as one piece of information in deciding treatment after surgery. It is done on the tissue from surgical biopsy. Genomic Health (the only company to do Oncotype) is considered an out of network lab for most insurances. They were fantiastic to work with and appealed my insurance company. They did all the paperwork. No hassles. Have you seen the plastic surgeon yet? Perhaps you could ask the nurse in the oncology office or surgeon's office if they have patients who offer to talk to newly diagnosed women. Do you have a breast care center near you as they might have info for you or a buddy program.

I live in Maine with my partner and 9 yo son. We are getting married in MA in two weeks where we both grew up. We started planning before I was diagnosed. Lottie healing thoughts for you and your wife. It is a difficult journey but made so much easier with the support of family and friends.

Nicole

waitingandanxious

Hi, 

I'm new here too. Not diagnosed, just waiting the long wait for my biopsy results. I am high risk because my mother had metastatic ILC involving 17 of 20 lymph nodes last year and this year I went for my yearly and the doc found microcalcifications that she wanted to biopsy, so I'm waiting right now to see what that is.

I am 44 years old, live in NYC and I've been with my partner for 17 years. We have five rescued dogs and a big backyard for them to play in. I work with multiply-handicapped students in the Bronx and life is otherwise good.

It is nice to meet all of you,

Patricia 

dee1961

Hi waiting and welcome,

Nice to meet you too. I know waiting is hard. Just remember that 80% of lumps and calcifications are found to be B9. Take a deep breath and hang in there. Keep us posted, we are here for you  

Dee~ 

dee1961

Hi waiting and welcome,

Nice to meet you too. I know waiting is hard. Just remember that 80% of lumps and calcifications are found to be B9. Take a deep breath and hang in there. Keep us posted, we are here for you  

Dee~ 

dee1961

Haven't heard from alot of you ladies lately, what's been going on?

lottie

Thanks for the great welcome all. I appreciate it! Looks like my insurer will cover the OncotypeDX if my nodes are negative. That's a relief! And, thanks for the reassurance about the drains and all that other happy stuff ;-).

I see my surgeon later this week to make our final plans for surgery. She's a powerhouse, so I feel like I'm in good hands.

My wife just ripped up her knee during "Over 40" softball yesterday afternoon so we have a temporary role reversal at home -- she's the patient now! I'm praying it's a bad sprain, she's at the orthopedist now ... fingers crossed.

Best to everyone

Lottie

Lovegolf

Waiting

Please let us know your news...will be sending positive thoughts your way. 

Lottie sorry to hear about your wife's knee...after having mine scoped twice I gave up basketball in over 40...SUX all around when our body does not keep up with our spirits. I always figured ice is my friend..if the choiceis pain or numb from ice...take numb.  Good luck at the doctor's.  Am glad you feel so good about her.

NoH8

Looks like I missed a lot in the past few days.

golf- Being on the Komen committee sounds like a lot of fun and for such an important cause! That's great you were asked.

deb-  I think you made the right decision. You can't go back and undo forgoing chemo.

lottie- I didn't do reconstruction and in the past 8 years since my surgery I've never regretted it once. How's your wife doing?

patricia- from my experience, waiting was the worst part of the cancer ordeal, worse than surgery, chemo, diagnosis put together. Please keep us posted.

nicole- Congratulation on your upcoming wedding!!!!!!!!!!! I want to hear all about it.

waitingandanxious

Hi everyone,

I got my path results yesterday. It's ADH and I have to have a lumpectomy and will see the surgeon today. He has to biopsy the second area that the radiologist couldn't get to during the first biopsy as well.

If that comes back positive, does he have to go back in? or will he biopsy that area first and then operate on the 2 areas, the one with the ADH and the unknown area? In essence, I need surgery on 2 areas of the same breast. I don't know yet what the second area is because it will have to be biopsied by the surgeon.

Also, does anyone know if there is a waiting period between biopsy and lumpectomy? Does the breast have to heal for a few weeks first after biopsy? If so, that would work out great with my work schedule. If not of course, I will listen to whatever doc has to say.

I will keep you posted.

Thanks,

Lovegolf

Waiting

If it a needle biopsy there should not have to be any real wait time..just get the information and go from there.  If it is  more of a lumpectomy  it may depend on how fast you get results and the surgeon's decision.  I had lumpectomy and two weeks later had double mastectomy.  I think I could have done it sooner, but wanted to get somethings settled with work. Hang in there.

dee1961

Hi waiting,

The only waiting you will have is for them to get you scheduled. You do not have to be healed from your biopsy to have the lumpectomy. However, it may heal depending on how long it takes to get you in. Waiting STINKS!! ADH is like DCIS so you will have to get your final path report before you know if there are any invasive issues. Hopefully that will not be the case. We are here, take care!

waitingandanxious

Hi everyone,

I saw the surgeon yesterday and he is scheduling the surgery in 3 weeks. At that time he will biopsy the second area to find out what that is. I also have von Willebrand's disease so I have to see a hematologist before the surgery.

Has anyone else had von Willebrand's as well? Apparently I will need a shot of something before the surgery. Von Willebrand's is like hemophaelia, the blood is missing a protein that prevents it from clotting the way its supposed to.

NoH8

Golf- I had the same as you, lumpectomy followed by bilateral mastectomy in 10 days. I told my surgeon ahead of time I wanted as few surgeries as possible.

Waiting- I never heard of that before. I imagined that complicates the healing process, Can you tell me more about the disease?

dee1961

Hi Amy, How is your kitten doing? I hope he is better.

FYI...ADH is Atypical Ductal Hyperplasia. I think there is info in this site about it.

Take care!

Dee~

waitingandanxious

NoH8, this is all I know about von Willebrand disease:

"Von Willebrand Disease is a bleeding disorder caused by a defect or deficiency of a blood clotting protein, called von Willebrand Factor. The disease is estimated to occur in 1% to 2% of the population. The disease was first described by Erik von Willebrand, a Finnish physician who reported a new type of bleeding disorder among island people in Sweden and Finland.

Von Willebrand Factor is a protein critical to the initial stages of blood clotting.  This glue-like protein, produced by the cells that line the blood vessel walls, interacts with blood cells called platelets to form a plug which prevents the blood from flowing at the site of injury.  People with von Willebrand Disease are unable to make this plug because they do not have enough von Willebrand Factor or their factor is abnormal. "

I have to see a hematologist before my surgery so she can order the right blood factor to be used in my surgery. I'm going to have a lumpectomy for ADH on Aug. 11th, as well as an excisional biopsy on a second area of my breast.

I am thankful for this website and community. 

Lovegolf

Dear all

I am going to play golf in the morning!!!!!The last normal thing to get back to doing. It maybe an ugly swing but this will be on of the best rounds of golf I can recall and very important. There is life after cancer.....

Waiting  will continue to send you positive thoughts.  How is your partner handing all this?  If it would help I can PM mine's email.  Hang in there.