Anyone from Kirkland, Woodinville, Bothell

DianeB

Anyone from Kirkland, Woodinville, Bothell

DianeB

Anyone from the Eastside of Seattle starting chemo and wants to talk?

Anonymous

Hi DianeB

Im on the west side of the state from you but would love to talk if it will be of any help to you....

Jule

DianeB

Hi! I would love to talk to you. Where on the west side do you live? I am in Woodinville and had my surgery done at Evergreen. I am about to start chemo soon. Must decide between CMF once a week for six months or TC every three weeks for four times. Afterwards it looks like radiation for 7 weeks. I'm very nervous and scared. It is hard to think about anything else.

Anonymous

DianeB,

I live in the southeastern part of the state, kind of between Oregon and Idaho...Ive heard of Woodinville but not sure Ive been there...I have tons of family on that side of the mountains as both my parents were born and raised near Bremerton.

I opted out of chemo as I had that Oncotype DX testing done and my score was in the low category (12)...I had a lumpectomy, then 7 weeks of rads...our dx is similar other than my tumor was 2.4 cm, and I had no nodes involved.....I hit my 1 yr mark of being cancer free on Nov 15, 2007....and am currently only taking tamoxifen...Ive been graduated from the every 3 month followup visits to the 6 month time frame now...

I cant help much with advice on chemo but Im sure here to listen and lend support when and however I can.....

Jule

golfer779

DianeB, I live in Poulsbo, across the pond from you.  I just had my second surgery last week, did the mast and snode surgery and had to go back to have full axilliary node removal.  I will be starting  chemo in January, and have been told that radiation will be in my future too.

I'm had surgery at the UW and have seen the drs at Seattle Cancer Care, I will be having my treatments done closer to home in Bremerton. 

I'll be adding this post to my favorites to keep in touch, Carol

DianeB

 Carol,

What did you think of Seattle Cancer Care? I am half thinking of doing my chemo there. What kind of therapy has been recommended for you?

golfer779

DianeB - I had an initial visit with SCCA where I met the surgeon (whom I used), the oncologist (DR. Linden) and a radiologists along with some students (it is a learning center affiliated with the UW). 

During that visit I had only my path report from the initial biopsy, a Pet Scan/ MRI's so alot of my treatment care was only hypothetical at the time.  If my s/node biopsy had been negative and and I had clean margins, the chemo recommended was CMF lite.  The oncologist did say that tamoxifan would be most beneficial too.  Unfortunately, mast surgery and s/node path report was not quite as great as I would have liked. 

To answer your question, I am waiting on a new path report from this last surgery so my treatment plan can be advised.   Initially radiation was not really planned on, but with the margin at the chest wall not being great I guess radiation is also in the cards.

I questioned the oncologist in regards to the setting for treatment, she said that you are in your own room, (not a group setting), which personally I think I would like.  She did inform me that at the cancer center you do see "really" sick people and the isolation to individual rooms is based on keeping germs down.  I am planning on seeing a oncologist in Bremerton which is only about 20 min from my house, but will be using SCCA for my second opinions.  My oncologist in Bremerton was very positive in my quest for the most information I could give myself and seeing the drs at SCCA we're in his opinion some of the finest.

My initial meeting with the SCCA was tape recorded and has been beneficial to listen to, it's just too hard to take it all in at once.  I'm sure you would be happy to atleast have an appt for opinions with them.

Good luck in your adventure, we'll be in touch, Carol

DianeB

Carol:

I initially went to SCCA for a second opinion as well when I was first diagnoised. I saw Dr. Ellis and she recommended CMF VP for me. I then had a mastectomy on the left side and also had a tumor close to the chest wall so they are recommending radiation for me as well. I am considering going to them again for another opinion. I was just at Evergreen for my followup on chemo and they are recommending TC x4. It is hard to know what to do. Evergreen is much closer and the time is 12 weeks vs. 24 weeks.  Let me know what SCCA tells you.

Diane

golfer779

Diane, looks like we're in very similiar situations, lucky us!  I'll be sure to keep you updated as well.  I'm thinking the commute would not be a picnic so I'm hoping that both onc's will agree on a treatment regimen and I'll choose to get treatments over here.  

Have they told you when they want to do radiation?  I know I'll find out soon, but I'm curious as to what you'll be doing.

We're your four nodes taken during your mast surgery?  I only had two taken then with 1 showing a .3mm spot.  This full node dissection has been much harder to recover from and the numbness under the arm is a gross feeling to me.  I'm sure I'll get used to it, I'm also numb across the "chest" where the mast incision is, how about you?  I'm hoping to head over to the U to get this drain out today or tomorrow.

Did you opt for reconstruction?    I've decided I can live with the look, and the thought of any more surgery is not high on my list of things I want to do.

I'll be in touch, Carol

Anonymous

Im glad to see that you ladies are so close and can help each other through this as you will be going through your treatments about the same time...

Carol, I had SNB w/my lumpectomy in Nov 2006, it was rough and I HATE the numbness....after I finished rads in March I had a swollen lymph node so they took out more nodes so was kind of a mini dissection, they took out 9 more nodes (turned out it wasnt a lymph node after but a stitch that hadnt dissolved from the 1st surgery).....anyway, Im just pasted my 1 yr mark and the numbness does get better. It use to run from the back of my elbow all the way to mid-shoulder blade in the back but now it is only in a small section of the back of my arm and a small portion of the arm pit area. 

As I said before, I didnt have chemo so cant help much there but had 7 wks of rads so can try to help with questions about that when you each get to that point.

And of course if either of you just need someone...I'll be here keeping and eye on you both ..

Take Care

Jule

golfer779

Jule, I'm bet as much as you hated having more surgery, discovering it was a stitch is better than discovering more of the ugly "C".  I'm glad to hear your encouraging words in regards to the numbness.  Its such a strange feeling that words cannot really describe, but others who have it can relate. 

Hope to hear more from you as we continue this adventure, Carol

Anonymous

Carol,

Yes, as much as I hated having another surgery I was more relieved than anyone can imagine at the outcome...

I had never been sick in my life and only had one surgery when I was a child for tonsils so when this happened I was extremely fearful of everything!!!..Unfortunately after 4 surgeries I feel like an old hand at it....

I still get fearful and anxiety sets in a week or so before my follow up visits but hopefully once I get a clear followup I will no longer worry so much about them...

At my second 3 month follow up they did a bilateral mammo and it landed me in the 4th surgery because the found microcalcifications in the other breast....

But NOTHING, not even the complete hystorectomy that I had in April compares to the recover of the lymph node surgery ....Your right about the description not being understood by someone unless you've had it yourself.....nothing describes it....I still get that itchy weird feel in the numb spot and it drives me crazy...

Dont hesitate to ask anything you might need here, we are all in this together and thats how we all get through this tunnel....

Jule

golfer779

Jule, did you have the hystorectomy as preventative measures, I had the gene test done which came up negative.  The oncologists does suggest keeping my ovaries in the off position.  I guess the chemo will put me in early menopause, as well as tamoxifan, but the removal of the ovaries would guarantee that the estrogen will not be produced.  I would have never known anything about any correlation between ovaries and breast until this.

I like you have never been ill, my hospital stay consisted of a overnighter to have a baby 15 years ago.  I literally get a faint feeling getting a blood draw.  I keep telling myself that I will get used to all of this but I'm still a wimp.

Just talk to the nurse and she recommends me keeping my lovely drain until Thursday.  She said I don't want to have a chance of fluid buildup over the weekend and into the holiday.  As much as I hate it, I kinda freak over having it removed too.  Thanks for letting me vent, Carol

Anonymous

Carol,

Yes I had it as preventative for several reasons....I have a large family history of cancers including ovarian and uterine, my cancer was 95% er+ and 55% pr% so all that estrogen HAD to go!!!!....I was two sided about the surgery but went ahead with it and was grateful afterwards that I did...my GY/OBN came in after surgery and told me that they found tons of cysts on both ovaries and some on my uterus so he felt I made a good choice doing the surgery before something else happened because he said he was 60% sure I would have been looking at issues with female organs later down the road.

Its ok, Im a whimp too...I HATE needles and still can not watch them use one on me!!!! I have to take a b-12 shot monthly as I have this thing called pernicous anemia and after a year of that you would think I would be over it but nope....

I had a drain too for the time they removed the undissolved stitch....I had it for about a week and a 1/2 or so.....they wouldnt remove it until the drainage was between 15 and 20 in a 24 hr period....the removal was nothing at all....the doc had snipped the stiches and pulled the silly thing before I even knew what he was doing......you shouldnt feel anything other than a slight bit of pressure..

Vent away girl....Ive done tons of it my self...share whatever you would like or need to....Im always here to listen and kick ideas around...

Jule

golfer779

Did any of you see the 3 sisters on the Today show this morning who had preventative mastectomy surgeries.  They had them done at the UW, kinda an interesting story!

Anonymous

No, I missed it...I knew it was on but forgot to set my recorder to tape it ...

I know several ladies from this board that have done the preventative masts so was kind of interested...

Hope your having a good day and that your getting closer to getting your drains out ...

Jule

golfer779

Good morning Jule, we have a call in to the nurse for my drain removal, my husband is pacing hoping they'll call soon so we can head to Seattle.   We basically need about 2 1/2 hrs leeway for the commute to the hospital. He took the day off to take me and they said we could not schedule the removal until the numbers we're low enough.  Yeah, I can't wait to take a shower. 

Anonymous

Carol,

Thats wonderful!!!!

Did you see the post I left you on the other thread about the OncotypeDX test?

Since you will be going there today anyway....ask about the testing...I have been reading and they are now saying that it can be used with node positive cancers....maybe you can get in a clinical trial for it....

Will keep you in my thoughts today....good luck

Jule

golfer779

Jule, tube removal was a success, did not even feel her pull it out.   Got a copy of the path report from the nurse, 2 of 32 nodes were positive.  I did not see a doc, will see the onc next week to further evaluate the report and decide on the next step.   Came home kinda bummed, I really thought with the s/node biopsy having such a tiny spot that the full dissection would not show anything.  So far this adventure is not going according to plan!!!!!  Carol

Anonymous

Carol...

See....I told ya the tube removal was a breeze .

Ok, so the plan didnt turn out quite as expected but we can do this...so onward and forward....once you meet with the onco we will know much more and we will be able to start putting together a game plan....I would still ask about the OncotypeDx test....with only 3 nodes involved it still might be a possiblity.....

Im sorry you got this type of news just before the holidays but try push it to the back of your mind and enjoy your holiday plans with family and friends...its an awful time of year to be dx'd but it is also a help in someways...I was dx'd during the holidays too and it really helped alot to keep busy....

Let me know if theres anything more I can help you with and if not then I would love to have another friend to visit with , things dont always have to circle around our common finding of bc...if you just need someone to talk to or rant to well, thats what Im here for....

Hugs

Jule

golfer779

Thanks Jule, just told my dh, I would like to check in with the gals on-line prior to laying down, he is so supportive knowing I get alot of stress relief in doing so.

I have it in my notes for tomorrow to e-mail the doc tomorrow in regards to the Onco test and the Mammaprint test.  Hoping they kepy my speciman from biopsy somewhere so it can be tested!!!!  Thanks for keeping me level headed... Carol

Anonymous

Good idea about emailing in advance....I think they keep samples of the tumor for quite sometime....I dont know anything about the Mammaprint test but will look into to it too.....

There are so many things to keep in mind while trying to put together a plan of attack with this stuff...but we will figure it out and things will go well for you...

How are you feeling now that its been a week or so after surgery? Be sure to take it easy with that arm....I was about a week out of surgery and had my nephew vacumn for me...he didnt unplug the machine so I reached down and tugged the cord....WHOA DOGGIES!!!!!!!!!!!MISTAKE!!!!!!!! it set me back several weeks....so be really mindful of just habitual things like that...

Hope your day is a little brighter today...

Hugs

Jule

golfer779

Jule, I'm happy to report that one week post op I'm doing pretty good.  I think not having a drain hanging out of your body boost my spirit alot and I slept better too which always helps.  The nurse yesterday gave me the info for some physical therapy.  Thanks for the tip in regards to everyday tasks! 

Thanks for your positive spirit,,,Carol

Anonymous

Glad to hear you got some good rest last night...it does help ALOT.

I attended a lymp clinic at the request of my rad onco though I didnt have it....the blood had pooled in the lumpectomy site and basically solidified so he had me go for massage......twice a week plus worked on it at home myself but during the time I got to be friends with the therapist and she gave me excersizes for my arm and also showed me how to massage the lymph nodes in my body to help the fluid drain to other areas....

I will see if I can find the papers she gave me...I could scan the instructions and email them to you if I still have them...

Positive is always what keeps my chin up so I try to lend it to others when I can...

Hugs

Jule

golfer779

Jule - that would be awesome. 

I e-mailed my primary care physician for a refereral to a physical therapist.  The surgeon suggested I see someone who is familiar with breast cancer patients and has expertise with lymphedema.  We'll see if Group Health will bite, or if they will want me to go to their PT on-site which is fine as long as their very competent with this situation.

The more I look and educate the prospect of doing some prognosis testing, I think I may for go that idea.  I feel I will want to give this nasty c the big guns, especially with the node involvement.  To get a test back that may tell me that reoccurence is "blah-blah" doesn't really change they way I want to tackle this.  I know I will probably change my mind several times in the near future, but I'll take it one day at a time ... yak later, Carol

Anonymous

Carol

I also have Group Health so I dont think you will have an issue with it being a specialize therapist.....they didnt balk at anything to do with my treatment...not even the $3450 they put out for the OncotypeDx test!!!!! the only thing so far they have refused was the genetic testing but I wasnt sure I really wanted that anyway...

I agree with you decision about pulling out the big guns right away....Im not sure this test will be the deciding factor either....it has been around for a short time and Im not realy confident with the node positive thing just yet so I think your leaning in the right direction with treatment...

One day at a time is all any of us can do with something like this...take your time, do your research and above all make decisions that you are comfortable with....that way there wont be any looking back and regretting that you did or didnt do something...

I will try to find those papers for you over the weekend....I re-arranged my desk at home and move things and Im not quite sure where I put them but I have a good idea.

later

Jule

golfer779

Jule - how interesting, I actually had the gene test done at the tune of $3,500 and GHC had no problem paying.  Are you using GHC facilities for your treatments?  I have had quite a time trying to interpret the referals I have gotten.  I have a appeal in right now for a denial of referal services to Seattle Cancer Care.  They initially gave me a referal, but after getting an interpretation from them it is only good for second opinion and for 3 visits. 

The good news, the gene test came back negative.  Good news for my brother, son, niece ...

If you do come up with the suggestions from your therapist let me know, no big hurry!  I'm learning nothing in this journey is going to happen overnight!!!

Carol

Anonymous

Yes, I the cancer center in this area is GHC....they denied the gene testing because they have a criteria for it when involved in BC and I didnt meet two of the things on their list...it was kind of a  relief as I was very undecided about testing anyway...

I kind of have an idea where the stuff from the therapist is as I did fax it to someone a few months back but I also remember seeing it when I re-arranged things and Im pretty sure I put it with the rest of my BC paperwork....you will need to let things heal a little more before doing them anyway....

Jule