Coumadin, surgery, chemo

[MarciaB]

It's been a while since I've been here. Everything has been going well since Dec. 2003 mitral valve replacement (except for the near-fatal nosebleed incident last year). But . . . and there's always a but . . . I've been diagnosed with breast cancer. I'm the luckiest person, don't you think? I'm scheduled for a double mastectomy August 10th, with most probable chemo to follow. I'm wondering if any members have dealt with with this stuff on coumadin? I'm scheduled for reconstuction also during the surgery (they put "balloons" between the rib cage and chest muscle during the surgery, then fill them with saline over the following months, eventually replacing them with permanant inserts, followed by more minor stuff to reconstruct the nipples). The reconstruction complicates things a bit, turning an outpatient thing into a two day hospital stay, with more surgeries to follow. I'm a little nervous about this, I got a large hematoma from the biopsy, even though I did the Lovenox sequence before and after.

I'm concerned about the blood thinners delaying healing time, thus delaying chemo. It's an aggressive cancer, grade 3 out of 3. I could put off the reconstruction, but that would add one more surgery. I understand chemo really messes up INR, also. I'm really looking forward to my new perky boobs , but it's not worth my life.

Interestingly, the lump is almost directly over my heart. Five catheterizations and numerous chest xrays have anything to do with it?

Anyone had any experience with this, or other major surgeries?

MarciaB

 

[Lynlw]

I don't have any experience with this, but wanted to let you know i will keep you in my prayers. have you checked out any of the breast cancer sites? maybe they would have info on this kind of thing. please keep us updates if possible.
BTW my very good friend had breast cancer about 3,4 years ago and is doing wonderful.Lyn

 

[temp69]

sorry for the crummy news

sorry for the crummy news

but you'll be fine. i have a friend who had a mas. and she's going great, great, great, and it was seven years ago.

sending prayers your way

temp69

 

[Nan]

Hi,, I'm also sorry to hear the news and can't really answer any of your concerns. but I do remember my cardio saying that people on Coumadin and with artificial valves have surgery all the time. I don't know about the chemo.

But I also wanted to add that I know two people who are breast cancer survivors, and with one of them the cancer had spread, but even with that they are both doing OK.

Gee, one does wonder about the location of that lump....

Hang in there.

 

[geebee]

Marcia,
Sorry to hear your news and I will pray that things go fine. I haven't done the chemo bit but did have radiation and a lumpectomy a few years back. Doesn't even compare to what you will be going through but I just wanted to let you know that I can understand the fear.
I had decided if it came to that, I would not have reconstruction surgery because it was such an ordeal. I know a couple of people who have done so and are fine but they were not on coumadin so it will be no help for you.
I wish you well and will keep you in my thoughts.

 

[Georgia]

Marcia, Marcia, Marcia - so sorry to hear this. I had bc 16 years ago - cut, burn & poison; it was all successful (I've never had a recurrence). I was 40. So I guess some of us are luckier than others. I didn't have a very good prognosis, either, but here I am, fat & sassy & ticking along. btw - I had a lumpectomy, so didn't have to deal with the reconstruction.

I wasn't on coumadin then, so I can't help you there. My guess is Al Lodwick will be along and have some ideas. I would think there'd be problems with the chemo just because of the eating issues (I think the vomiting problems have been largely negated with medication). I can't imagine the interaction stuff.

I'm sending all my best wishes and good thoughts to you. I know what you're going through, and it's doable. Feel free to pm me if you need to chat or have questions.

 

[Nancy]

Can't help you Marcia, with the Coumadin. However I have had a lumpectomy, chemo and radiation, all started two years ago this summer. But the treatments are over with and I feel well, AND, the best thing is that I have hair again. It's definitely a rotten time in your life, but you will get through it and it will get better. There are some wonderful relatively new things available now that weren't available before. So even with some of the more aggressive cancers, the treatments work well. Some have said that the more aggressive cancers respond better to chemo.

Many oncologists are also hematologists. So, if there ever was a marriage of medical fields made in heaven for you, that would be it. They know all about how the blood works and also how the chemo works. And most understand about Coumadin.

Here is a link to a site I found to be terrific and answered so many questions for me.

http://community.breastcancer.org/ubbthreads/ubbthreads.php?ubb=get_topic;f=59;t=000008

 

[maka]

Marcia
I believe I know what you are going through. I had bc 26 years ago...I thank God every day for all these years. At the time I decided against reconstruction ( not worthy to match the other ).
I don?t know about coumadin but I recommend that you go to a good cancer hospital where doctors have experience with different situations. In NY, Memorial Sloan Kettering has been rated number 1 in the country for years. There is also one very, very good in Houston.
Good luck to you and be optimistic.

 

[Guest]

Marcia,

Sorry about the run of bad luck, but your attitude sounds great.

The hematoma from the biopsy was because of Lovenox, not in spite of it. Lovenox bridging does not eliminate complications like this. It hedges the bet that the complications could be worse. Excessive bruising and bleeding are the two main complications of Lovenox bridging.

One positive thing about being on warfarin through this -- tumors are major clot generators. Being on warfarin may have helped you avoid a clot - and it will help prevent them after surgery. Look at http://www.whonamedit.com/synd.cfm/2943.html

I manage the warfarin therapy for many people undergoing chemo and radiation. Because their condition changes from day-to-day, I try to not have them go more than two weeks without a check. After you have finished both chemo and radiation, you can go longer.

 

[perkicar]

Breast Cancer

Breast Cancer

Hi Marcia--
I'm a 16 year survivor, was diagnosed in 1990 and had a mastectomy, reconstruction and 6 mo of chemo. Unfortunately, I can't give you any feedback on coumadin since the same thing that caused my aortic stenosis 28 years after radiation for Hodgkin's caused my breast cancer 12 years after radiation. So I didn't know I would be a valver when I went through BC.
There are some great online support groups-one is the breast cancer list serv, if you email me privately I will send you the link. I've been part of it for years and have made many good friends through the experience, even though I don't worry too much about my BC now.
I'd trust Al to help with understanding about the coumadin--he da man!

 

[Christina L]

Marcia -

Marcia -

I am so sorry to hear this news from you. I am with you on wondering about the radiation and chest x-rays causing your BC. You will be in my thoughts and prayers. Keep your chin up!

Christina L

 

[MarciaB]

Thanks all! I guess when I think about it, we've ALL had major surgery followed by blood thinners! So, I shouldn't be too concerned about that.

Al, I'll PM you about the effects of chemo on INR. I won't know for sure until surgery on the 10th if I'll be doing it or not. I need to get straight who will be managing that. The gal at South Denver Cardio is very good, but she's telling me that the oncologist will manage this during chemo. My primary says differently, but until I get hooked up with an oncologist - who knows!

I have been self testing, but not getting support from my cardio on that since the nose bleed incident last November (more his liability concerns than INR being out of wack-it wasn't). I've been doing monthly lab tests and comparing with my results since then - my machine was consistently .5 low. I just had Roche replace my machine because of other problems - they were very good about it - sent out a replacement the next day.

Otherwise, I guess the VR was good practice for this. I remember how emotional it was before the surgery and know this time that it's best to just chill, everything will be fine. The most stressful thing, as before, is getting all the medical stuff straightened out. Expect that nurses, doctors, assistants, labs, etc. are not going to get back to you when they say they are . . . and to just be grateful when they do! And scars are just added character, and they really look pretty good in time! And to be very blunt about what you need . . gift cards for restaurants . . . no flowers . . . money from parents . . . and how about some Victoria Secret?!! And have that good cry when you need it, that will pass also. People say you're brave, but really, what choice do you have? You just go forward, day by day. We all know that . . . life may change, but it keeps on coming (well, we hope so ).

Marcia

 

[MarciaB]

Surgery tomorrow

Surgery tomorrow

Finally, surgery tomorrow! Very mixed feeling of glad to be getting on with it and dread. I put my foot down about getting a CT or PET scan because I have had a low level of congestion and general lung weirdness for about 6 weeks. Did the PET scan on Monday - it showed involvement of one lymph node, unfortunately not under my arm, but under my ribs. The surgeon doesn't recommend surgery there because it sits next to a major artery and all the scar tissue in there. So they plan on getting it with radiation. Sigh, chemo and radiation. Sure would feel better to get it cut out. The PET scan lit up like a Christmas tree at the orginal tumor site, supposedly removed in the biopsy. Did that sucker grow back in two weeks? You never think to ask those questions when the doctors are in front of you. I guess it doesn't matter, they'll get a good look tomorrow. No one wants to address the lung stuff - nothing there in the PET scan. Cardio won't call me back - if it doesn't fit the pattern, it must be imagined. Very glad I pushed about the PET scan; who knows when they would have found that node?

It's been a hard time telling people. VERY different response than to heart surgery. Heart surgery is impressive, cancer is scary. Feels like you're walking around with a big "C" on your forehead.

Marcia

 

[Nancy]

Best luck tomorrow, Marcia. I'll be thinking about you.

 

[catwoman]

Marcia:

Good luck with your surgery. I'll have you in my prayers. Please have someone post for your -- we'll be waiting to hear something.

 

[BDMc]

You Are So Right

You Are So Right

Dear Marcia, So sorry for your troubles! I'm glad you had the sense to get pushy, and demand the PET scan! You are very wise not to just turn your care over to the pros. They have a tendancy to ignore what they don't understand. I know what you are goung through really sucks, but I also really admire the way you are taking resposibility for yourself, and you treatment. I work with two women who've had double mastectomys, and both are doing well. One had recontruction, and the other did not. Niether of them had to contend with warfarin though! Wishing you the best of outcomes. I'll be thinking of you, Brian

 

[MarciaB]

Back from hospital-twice

Back from hospital-twice

Hi all,

Surgery went well - I was pretty chipper on Friday, so they let me come home. Saturday I started to feel very bad when I got up and swelling started on the left side. I called my plastic surgeon and he had me go to his office - I could hardly walk in. Yep - another hematoma. He got me admitted - took me over, personally checked me in, then wheeled me right to my room. I didn't get in to surgery until 9:00. By that time I was stretched like a water balloon. I had one spot that was bleeding, and lost a liter and a half of blood. The surgeon didn't understand why I wasn't in tachicardia. They tanked me up with 6 units of blood because my hemocrit was so bad. They called in the on-call cardiologist to work on the blood thinning stuff (my cardio works out of a different hospital - and hasn't returned any of my calls since this began).

So - I'm home again - more tests this week and next. Then the oncologist wants to have a central line put in for chemotherapy - more surgery! The though of it makes me cry. I don't know what I should be doing here - do I trust the surgeon who has operated twice with two hematomas to put in the central line? I don't think it's really his fault - but the anti-coagulation routine. No one really wants to deal with it - and it's harder with a doc that's at a different hospital. Do I blow this surgeon off and have some one at my cardio's hospital put it in? Do I blow off the cardio and find a new one at this difficult point?

One thing I will do today - I'm calling the cardios office and getting an appointment on Monday. If he can't spare ten minutes to talk to me, then I'm going to tell them to pack up my records and I'm picking them up.

Well, on the bright side - they didn't find any more cancer and the plastic surgeon is a great guy!

Marcia

 

[Mary]

My goodness, Marcia, you have been sorely tried throughout this. I am so sorry to read what you have experienced.

When my mom had nonHodgkin's lymphoma, she stayed with her original oncologist because he was her original oncologist!

When she had a relapse, she ended up in a hospital in Kentucky, rather than Missouri, and immediately bonded with a new oncologist. There was something about the doctor that made her just feel better. She made the switch, and never looked back.
My point is, if you face a long road ahead, maybe you should go with the doctor you feel the best with.
Your plastic surgeon sounds like a gem; I hope you encounter many more like him.
You're in my thoughts and prayers,
Mary

 

[aussiemember]

Marcia,

What a difficult road you are travelling at the moment - you are in my thought and prayers - please let us know how you go with the cardio on Monday and how the tests go this week and next. We are here for you - *hugs* - Jeanne

 

[Karlynn]

Marcia, I don't know how I've missed this thread over the last 2 weeks. I'm very sorry to hear you are having such struggles. But it also sounds like you are persevering through it. I'm sure that there are some days when you don't know where your strength is going to come from. I will keep you in my prayers.