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Up-date ---Not Good news but Not bad either!
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GGrandmaJan posted:
To All my friends,
I started a new thread as the other one was getting pretty long.

Went up to Cancer Care Center in Seattle yesterday. Wow-2 hrs. up. My daughter did great driving.

Saw the Sarcoma/Breast Specialist. So nice and a woman too.
Plan of action is to get a port put in and start chemo. UGH. But I knew this was coming. Taxol will be drug of choice. So will need all the info I can get from anyone that has been on it.

Chemo will not cure this but keep it at bay. She was worried about my inc. and said thought surgeon shoud remove more of the skin. But only after I have been on chemo--2 cyles. Monitor the inc--watch for any changes. If it changes then the chemo is working.

Good thing is----my Onc Dr can do the treatments here and I don't have to go to Seattle. Horray!!!!

Sarcoma is a surgical disease of the skin. Said only way to cure it is to remove all of it. Hides just under the skin. So need to monitor all my body for changes. I need to set up appt with a Dermotogist for skin mapping so we know where all my moles are and keep watch.

Worse thing is---CT and PET scans DO NOT pick this up elsewhere in the body. It is a very sneaky disease. I asked her then how do we monitor this. By watching for any skin changes. Brother, like I can see my back or for Heaven's sake let alone my BUTT. LOL Guess that is what hubby's are for, Right?

BTW--this may sound a little weird but if any of you have something strange going on with your body----Please take pics of it. Before I had my mast my hubby took several pics of my breast. Plus I had the surgeon take pics in the OR before surg. A very good thing as this new Dr (of course) didn't have a clue what it looked like before but I took the pics with me. She didn't realize it was the whole bottom half of my breast. She thought from the path report it was a dime-size area.

So I feel lucky. She was so calm and settled my nerves. She has seen a few of these and after more surgery her pts are doing good.

I have appt tomorrow with my Onc Dr so we can get started. Looks like I will have a summer of no hair. A very good thing I kept my wigs, now all I have to do is find where I put them. LOL. Just hope I can handle the chemo all right with out many problems.

Thanks again for all your prayers and good wishes.

Rachael, I made sure and took the "Warrior Stone" with me. I felt all of you there holding my hand.

Blessings.
Jan
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judyfams responded:
Jan,

What a wonderful, courageous woman you are. I wish you the very best and will continue to pray that all goes well for you during your treatment.

Thank you for informing us about this post breast cancer problem.

I have followed your threads in awe of your quiet acceptance of your new situation and your somber intelligence in dealing with it's treatment.

Love and good thoughts and lots of prayers to you and your husband.

Judy
 
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GGrandmaJan replied to judyfams's response:
Oh Judy, WOW!!

I am not a courageous woman. Some days I want to go out to the wood shed and yell my lungs out. But---I might need them to breathe with. Other days I want to curl up in a corner and cry my heart out---But again I need my heart.

I was so relieved I didn't have to be in the hospital in Seattle for treatment. That alone gave me much comfort.

5 yrs ago when I had this---I was so scared of chemo. Doc said he wanted me to take it to be sure they got all the little buggers. My stage was borderline for chemo anyway.

The quiet acceptance of this is just not so. I am relieved that my Onc Dr -----FINALLY-----listened to me and was in shock when he saw my breast before surgery. He has been calling me his "Problem Child" for the last 3 yrs. My daughter says it was because I wouldn't finish the chemo. ( But my bode went into major shut-down). And we both agreed the next chemo Tx would be worse. So I thought he was O.K. with that. I could never think why he called me "Problem child." Other than I do a lot of research on this and when Evista was O.K.'d for breast cancer pts I begged him to let me go on it instead of Tamoxifen which made me so nauseated. I certainly wasn't trying to second guess him on anything.

So when this all flared up I guess a little vindication was justified. My daughter and I did a lot of laughing out in the parking lot---as his attitude changed so rapidly when he saw my breast. I don't think he ever didn't listen to me but he kind of glossed over the things I complained about. I probably am not making much sense. Guess you kind of had to be there.

He is a very smart doc and I trust him BUT I don't think he likes a woman pt debating with him. But after all it is my body and I certainly want to live as long as possible.

Thanks for your very kind words. I did smile when I read them as I never thought of myself as you described.

Blessings and many hugs
Jan
 
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rachael67 responded:
Ah, Sweet Jan...I am so glad you don't have to stay in Seattle for the treatments! And I am so glad that the doc was both knowledgeable and nice.

And THANK YOU FOR THINKING OF US...and suggesting that we take pics! Whoda thunk?! Certainly not me! But it's a great idea! (Wish I had done it when I was much younger, however! The added pounds, droops and buldges certainly don't look so nice, but probably more useful in this health effort.)

Yes, my Friend, we all were certainly with you!

Keep us updated on how things are going. You remain in my heart always!!

Blessings and hugs.
Rachael

(Incidentally, I just told DH about the pics....He said if he had suggested that, I'd say he was a dirty old man! ...And he's right!!! )
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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Janice_78 responded:
Jan,

Thank you for keeping us abreast of what's going on. It sounds as though you'll have your hands full for a while, but it also sounds as though this is "doable".

Continue putting one foot in front of the other and hold your head high.

We're all in your corner, rooting you on.

Hugs,

Janice
 
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brcansur responded:
Jan so glad to hear you can do your treatments close to home that is so good for you. I am so proud of you for speaking up for yourself and letting the doctor know you did your research and that you know your body and what is wrong with it. Taking picture is the best thing to do I did that and still take pictures if something is going on because you never know when they may come in handy. I have a scape book of my whole breast cancer journey pictures of before when I first found the lump up to now with the red swollem breast. It is alsways best because you are your best advacate and pictures back up what you are telling your doctors I learned that a long time ago. You are one very strong, smart and informative lady keep up the good work. I am very proud of you. I will be praying for you and sending you angel hugs take care and don't do to much get your rest when needed. Oh and if you need to go out in the shed and scream do it and if you need to cry do that to because we all need to once in a while then we feel better and get back to the fighting the beast. lots of love and angel hugs Roberta
Roberta
 
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GGrandmaJan replied to rachael67's response:
Thanks Rachael,

Hey, a pic says a thousand words, Right!!! I am so glad I had them with me on Monday.

O.K. went up to Olympia (next town up) and saw my Onc Dr in his office there. He only comes down to my town on Mondays. Well, with Mon being a holiday it would have been 2 weeks before we could get started on chemo. First off get the PET scan so we have a baseline. 2nd is get the port put in by my Surgeon. Don't know yet if it will be done in his office or Out-Pt at hospital. Then I am to see him in Chehalis on the 13 for results of Pet and lab work. Then we will hit the road running. He explained I shouldn't have any problems with Taxol. HA---I have been reading the side effects of it. At least this time my attitiude has changed cause if I want to live I have NO other choice. He said if I handled it all right we would do it for 6 weeks straight and then have surgery to remove more of the skin around my inc. So that is where I am at the moment.

I stopped at a fabric store and got a ruler I have been wanting forever and a few odds/ ends for my purses. I know I will not feel like going shopping once chemo starts so am trying to gather up little things to finish my projects. Cause YES, I am going to be in my sewing room. I WILL not let chemo get me down this time around. Besides I have all of you to hold my hand and cheer me on.

LOL---Rachael---I knew you were married to a "dirty ole man"!!! That is too funny.

Can you refresh my memory---Did you have rads with your ca? If you did, Please, do keep watch on what your breast is doing. What I have can occur 3---45 yrs after rads. The Dr in Seattle says she has been seeing more of it lately. And her patients are all doing good. Thank Heaven's.

Again many thanks. Yep, took my warrior stone with me again today.

Blessings Jan
 
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brcansur replied to GGrandmaJan's response:
Jan
It is always so uplifting to read your post even when you are talking about your doctors visits. Because you ending with going to the fabric store I love it. I do the same thing after going to the doctors I usually end up at the fabric store or craft store. It seams to relax and calm me plus I can always find something I need lol.... Us sewers always need something don't we? lol.... I am happy to hear you will keep up with your sewing it keeps your body moving some and your mind busy. You don't want to stay sitting around to much because then you start to hurt and think to much. So stay busy mind body and soul. Keep up the good work stay positive. My prayers are with you sending angel hugs and lots of love Roberta
Roberta
 
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GGrandmaJan replied to brcansur's response:
Thanks Roberta
How did your appt go with your Doc. When are you going to have your implant removed??

I don't want to scare you-----But do discuss with your PS. the problem I came up with. My breast started out reddened, rash, very hard and swelling. Did you have any rads as part of your treatment? I just want you to be aware to ask questions. My angiosarcoma is just under the skin and very sneaky to find. All the normal tests did not show up anything. I was reading your post and you stated your PS said things didn't add up. So ask questions. O.K?

Best of luck and happy sewing.
Jan
 
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brcansur replied to GGrandmaJan's response:
Jan
I am going in tuesday to get it out and I am waiting for test results to come back before having new one put in. He is going to do test of skin and fluid plus anything else that does not look good. He did say that there is a form of cancer that has all the sign that I am having so he wants to rule that out before doing anything else. It is either an infection, reaction to implant but it has been 2 years so he does not think so, or something else all together. I hope something easy like and infection or reaction I do not want to have to deal with some carzy stuff right now I have done enough of that in past 3 years. I did not have rad but I did have chemo and bilateral masectomy in 2008 my reconstruction in 2009. My left breast started in dip in so had to have that implant taken out and new one put in this past oct 2010. Now the right implant decides it was being left out so it ruptures 3 weeks ago or at least that is when I noticed something different. So I am hoping for the best, staying positive and fighting like the pink lady that I am. Like you I am staying busy with things around the house yard work sewing reading what ever the day brings me. Just keep the mind busy. I hope you have a great weekend angel hugs to you Roberta
Roberta
 
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GGrandmaJan replied to brcansur's response:
Oh Thank goodness you didn't have rads. When I was reading your posts I got really worried. I am praying you only have an infection and it all will be taken care of easily.

See the first time I only had a lumpectomy and rads. Well, one chemo treatment . Also from what I understand if you only have rads on your incision this stupid stuff can also occur. What a darn sneaky thing angiosarcoma is.

Praying this is taken care of quickly for you.

Blessings. Jan
 
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brcansur replied to GGrandmaJan's response:
Jan
Thank you so much for your prayers and concern, I can use the prayers for sure come tuesday. I am hoping it is something simple and once the implant is out it will clear up fast and everything will be back to normal soon. I do not want my whole summer being spent in and out of the hospital for testing and surgery. Thank you again for all your concern and prayer I am sending prayers your way also for all your appt and treatments coming up. Take care have a great weekend angel hugs Roberta
Roberta
 
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PinkLady44 responded:
Dear Jan,
I am sending you TONS of prayers, hugs, positive thoughts and more hugs...you are certainly in need of all our support right now.

Am so glad that you can do your chemo close to home. That will make it a lot easier. I am doing Carboplatin & Taxotere (similar to Taxol) - getting ready for #2 treatment on Jun 3. You will probably get some steroids by IV beforehand and some anti-nausea IV, too. As for the side-effects, I've actually done really well this time around with nausea. The Emend/Aloxi in the IV really helped, and the Ativan Anzimet orally for 4-5 days after kept the queasies at bay. My only problem was excessive diarrhea, which we now have under control with Lomotil & Prilosec (to block the acid). I'll be on those daily for the duration. Taxotere can cause that. Not sure about the Taxol.

Glad that you're finding ways to keep busy. I'm working about 30 hrs/week at this point. As my Tx progresses, I may have to cut back more, but for now, I seem to be hanging in there okay.

Hope you enjoy this weekend with your family - maybe we'll actually see sunshine here in WA (it's peeking out right now...not holding my breath though...LOL).

You can do this - we both can!

Hugs & love always,

Nan / PinkLady


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