Crazy Sexy Cancer in Seattle
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Susan and Jean, I saw Dr. Tran at the Radiation Oncology wing at Harrison Hospital, Bremerton. Would highly recommend her. Nice new facility (added bonus), and a top notch Dr. And your right at some point in time there will be a facility in Poulsbo (still a few years out). Lets hope we never will need to see the inside of that facility !!!!!
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Amen to that!!!
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Hi everyone,
I haven't been on in a bit. Seems like everyone is doing well. I hope everyone continues.
I have a question, does anyone have those days were it seems the whole day is spent in panic? Or is it just me.
Today is one of those days for me and I was wondering if this is just all part of the process. I thought it was bad just getting my dx but the last few days have just been a bear!
I hope you are all having wonderful days and my post doesn't dampen any of them.
Tina
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Tina - Overall I am doing well, however I told my oncologist that I almost have more anxiety now than I did when I was first diagnosed. For instance, i have never had a pet scan. I asked her if I can have one, and why I didnt etc.etc. I think we are in a "groove" so to speak and as I am used to the chemo (sad reality) I have more "down time" to worry, or think up things to worry about. I am really trying hard not to read too many posts that are outside of my CMF or this thread.
How many of you have had pet scans?????
Tina, you are not alone. Hope that helps!
Susan
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Tina, sorry up front that I'm not to "up to snuff" with your journey thus far .... but just my take with the emotional rollercoaster ... about midway through my 6 mo regimen of chemo I had a few serious (in my standards) meltdowns. For me personally I believe that it had more to do with my hormones going bonkers. Went through the chemo induced menopause and all heck broke loose. Happy to report that things have mellowed in that department.
My take, try your best to roll with the moods. Hopefully your surrounded with caring people who will help you through the tough times. Personally, a half dose of Lorazepam works wonders as well. Never been a pill taker ... but with this journey I have decided that living through modern medicine is not all bad.
Best to you, Carol
Susan ... I did have a pet scan as well as a bone scan (not bone density) prior to my mast surgery. What's your onc's take ???
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Hi again.
I agree Susan, there are days that I have more anxiety than I did in the beginning. I do have the pills and there are some days I take more than I probably should. I think it's an up and down thing. I am mid way through my chemo 2 more to go then rads.
Susan, I did not have a pet or bone scan. My onc's explained that since there was no node involvement or vascular invasion and my cancer had not gone beyone my breast they felt there was no need to do these at this point. I did have an MRI which they said would have brought up any suspicious things.
I think alot of what set me off is that I have a neighbor accross the street from me who 5 years ago went through her fight with BC. Well now it's back and she has some mets and is stage 4. Although I wonder about her treatment as she was told after one year that she was fine and cancer gone. My docs have told me that they will be following me for the next 5 years. I just feel so angry that maybe she didn't get what she needed in the beginning. We all know each of our doctors have their own methods of dealing with this thing, and I start thinking what if my guys are lax or just not taking care of me. I have asked the questions and have gotten what I feel are competent answers. I am on Cytoxin and Taxotare which according to my onc are pretty powerful cocktails. Chemo was an option for me not really a necessity. The rads are due to the larger tumor being so close to my chest wall the surgeon did not get the margin he would have liked. I just keep thinking of my kids they are young and I need more time.
This is indeed a strange journey, some days I'm kicking ass and others I'm down on my knees desperate.
I thank all of you for taking the time to respond. Please don't let me ruin any good days for you. I imagine I will come back out of this and get back to the business of kicking ass.
Thanks again,
Tina
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Tina and all - you should not worry about "ruining a good day" as we can all relate!!!
My onc. said the same thing as yours about the Pet scan. Not necessary as I was node negative. Chemo was "optional" for me as well, although my oncotype score of 23 makes me very happy to be doing chemo. I agree, my kids need me, so I am doing all I can to kick this NOW for good.
I had a breast MRI and a chest xray prior to surgery.
Anyway - hope all are having a good day/evening. The storm last night was something else here! My neighbor lost 4 trees - that hit their deck. Boy, was that LOUD! Between that and my new mini hot flashes I did not sleep well. Hope to tonight!
Susan
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Susan, Wait til its hot, I have to wear lymphedema wraps went its hot.
Good luck, Tina I agree we all have thoughs days, God bless you.
Debbie
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Tina ... never an apologize needed when you or anyone feels the need to vent ... hey we're in this together right ???
Susan ... mini hot flashes ???? Let's hope you don't experience a "maxi" !!!! How bout this crazy weather ... left work with soaking wet feet and jeans from the knees down, shoot the sun was out when I left the shop to go out on a job, Ooops !!!!
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Tina, AprilGirl-I had an MRI, a bone scan/ct scan and PET scan when I was first diagnosed. I did not have any lymph node involvement, but my personality is such that I would have been a nervous wreck if I didn't know for sure that there was no cancer anywhere else. I talked to 3 different oncologists and 2 different surgeons before I made any decisions. If you aren't happy with the answers you are getting from your doctor, you have every right to go talk to another doctor just to get their opinion. When I told my first surgeon that I was going to go talk to someone else to get another opinion, he whole-heartedly supported me. He even asked me if I wanted digital copies of my pathology reports and mammogram etc.
I think part of the concern about PET scans and Bone scans are that they are super expensive to do. Maybe they are concerned that your insurance won't pick it up??
As far as having down days-you are entitled! I think everyone wants us to stay positive all the time, but it just isn't realistic. Your hormones are going crazy, your body is under attack, your whole life is at stake. We all have good and bad days. I am almost a full year out from my diagnosis and I still have bad days. Give yourself permission to go through the whole range of emotions.
Rainy day here in Seattle
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Hey girls...I did not have a PET/CT until I had a symptom...the $$# lump in my neck...which hinted that if it was in that particular node...it was probably somehwere else too. Until that point after my first round of "issues" I only had breast MRI's and mamm.
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thanks everyone for being so supportive. What a roller coaster it is sometimes. Today I start steriods again for Chemo #3 tomorrow. So I will in all likelyhood be up at 3 am scrubbing something!
As for the scans, it wasn't a matter of insurance after speaking with my docs several times (I tend to be OCD like that) they all agreed that there was nothing suspicious to warrant the scans. So in a way maybe insurance as they have to have proof of something for insurance to approve it.
Aprilgrl I also had an MRI and chest xray prior to surgery. that one scared me a bit although I quit smoking years ago, when I got my dx I must have smoked a carton in one day. Now every time I have back pain or something I start thinking uh oh! But like I told my onc nurse the Cytoxin will take care of anything popping up in my lungs! Ha! Ha!
Thanks again everyone. Hoping that May will turn into a sunny month eventually! Have a great day!
Tina
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I live in Olympia WA. I was diagnosed on March 17, 2009. I am getting Abraxane (was Taxotere up until I had a severe allergic reaction on my second dose) Carboplatin, and Herceptin. I am planning to have a full mastectomy with reconstruction done at the same time.
Anyone else have the surgery done by Dr. Lee and Dr. Chatal? How did you like them?
I have 3 kids 8 and a 4 year old and an 9 month old. I am only 37.
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Colette-Im sorry you've had to join us here......but glad that you found this thread....The ladies in your area are wonderful and always willing to help...I live on the other side of the state, but hope to someday join in one of the gatherings that they are beginning to have.
They will be along shortly to visit with you but please feel free to post here as often as you like/need. Ask any questions that you might like...
I think there might be one of two of the ladies really close to you...I cant remember where everyone is from...
Anyway..I saw your post and wanted to welcome you...
Jule
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Hey Colette,
Welcome to the group. So sorry we are meeting this way. I'm Tina and I live up in the Bothell/Everett Area. I was dx on Jan 21, 2009. I am halfway (as of tomorrow a little closer) through my chemo, I get Cytoxin and Taxotere then I'm on to about 30 rounds of rads. I had a bilateral mast on Feb 27 with reconstruction in progress. I have two kids Tessa 10 and Michael 7 in addition to a small zoo which consists of a St. Bernard, a Black Lab, a Red Eared Slider Turtle and some fish. We did have a cat but I think he got fed up with the lot of us and left about a year ago.
I'm sorry but I don't know your doctor's hopefully someone else here does. My doctor in Everett is Thomas Smith pretty well known and a good rep. I am curious, why did they start you on chemo before surgery? Did they say why? It's amazing to me how each doc can be so different in their approach to treatment.
I hope you will keep hanging around with us and keep us posted on how it's going for you. We are all together in this "thing of ours"
Tina
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Hi Colette - sorry to hear you have joined us, HOWEVER This is a great group of women - all going thru what you are in some rescpect and we can all relate....which I have found so helpful.
I live on Bainbridge Island and go to SCCA. I had a lumpectomy, but am having a re-excision with bilateral reduction done this summer after I am finished with chemo - this will be at UW and my surgeon is Dr. Said working with my breast surgeon Dr. Ben Anderson.
We are having a Seattle get together in June - Is it June 17th???? I will have to read thru the old threads...so will send you a PM with the info.
My kids are 10 and 11 (almost 12). Hope you are feeling well with the chemo - now that you are not having a reaction....
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Hi Colette,
I think Jule is right, there is someone on this thread who is near your neck of the woods. Also, GinaGina had a bad reaction to taxotere as well so there are certainly people who will be able to help you out with questions.
I am in the Maple Valley area, am 44 years old with 10 and 11 year old daughters. I have done all of my treatment through Swedish Hospital on Capitol Hill so can't help you with your doctors.
Aprilgirl1 is correct, we are having a get together for all of us to meet in person (this will be the second one). It would be a little bit of a hike for you, but we would LOVE to have you. We will be meeting on June 17th at Red Robin at Pier 55 in Seattle. I think we said 6:00pm. Very few of us actually live in Seattle, but since we have people coming from all directions and a couple using the ferry to cross over, it is about the best we can do for convenience.
I too am very sorry that you have to join us. I keep saying that it would be so much better if no one new was diagnosed, but unfortunately it just keeps happening. Hang in there and keep us posted and let us know how we can help.
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It is such a roller coaster of emotions from beginning to end.
Tina, having someone close to you have a recurrence would certainly throw any of us into a major funk. When I think about the possibility of getting mets I want to through up. Unfortunately, whatever tests we get and whatever treatment we get there is always that small chance it could happen. But hey, I could get hit by a bus tomorrow so I try to remind myself the risk is low (and I try not to visit the Stage IV threads) and stay in the present.
Susan, I think I told you this but I had a abdominal CT just because on the breast MRI they happened to see some spots on my liver--otherwise I wouldn't have had it. I'm sorry you've been feeling down--let's go for a walk (and we don't even have to talk about cancer if you don't want to!)
Hugs to all,
Jean
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Jule,
Thank you for the warm welcome. I agree it is unfortunate circumstances which we are meeting in. I have found out and learned a lot about what I am going through thanks to this website and being able to talk to others who have gone through what I am now facing.
I would love to be able to attend the gathering, but if my chemo schedule stays the same that it has been (every 3 weeks) my next chemo will be on May 26th and then the next one will be June 16, and I know I will not be up to going anywhere the next day.
Tina, I want to also thank you for your welcome also! I understand about the "zoo" we have 2 cats, 2 dogs, and a bird who thinks that the cats and dogs are safer than the kids! I swear the bird has nine lives and have used up at least 5 of them!
The reason why they are doing the chemo first is because they were going to do 3 rounds of chemo to shrink the tumor and then do a lumpectomy followed by 3 more rounds of chemo and radiation. The more that I learned about radiation, the less that I want to be part of it if I can help it. So with me already starting chemo, the Onc wants me to finish it and then have the mastectomy with immediate reconstruction surgery. I have had a great result from the chemo so far as far as it shrinking my tumors, to the point that I can no longer feel them. If I still have any cancer present or that the cancer had invaded my chest wall or any of my lymph nodes are involved then I will need radiation. I am hoping that I will not need it and that everything is clear because my tumor is directly over my heart and I am very concerned about creating a secondary problem because of radiation. At least with chemo, it seems that your body gets back to normal after you stop the chemo, where as radiation problems can pop up years after having the radiation completed.
April, I agree that this is a great group of women and I am fortunate to have found them. The Dr. that I am seeing are at the Swedish hospital. It sounds like they do this surgery all the time and that the surgeons work very close with each other. which I find comforting. I know that my Onc thinks that this is a good idea and wants to make sure that they keep him in the loop too, even if he is in Olympia.
I homeschool my kids and I am planning on doing a class about breast cancer once I am better and no longer have this "chemo brain"...IMO it is never too early to start learning about the dangers of breast cancer and it seems like more and more young people are starting to develop this horror.
Take care,
Colette
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Hi, ginagina. I am a newbie to bc and still adjusting to my IDC diagnosis. I'm currently in process of researching bc surgeons, oncologists and reconstruction surgeons. Specifically, since you mentioned Dr. Frank Isik in your Feb post, I was wondering if you would recommend him, and if you -- or others on this board -- have heard of Drs Patricia Dawson and Henry Kaplan at Swedish. Thx.
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Hi Chefgal - sorry to hear about your diagnosis. I am sure you are in a bit of shock, but glad you found this board. I have found it super helpful getting through the myriad of emotions and answers to so many questions.
Yes, I saw Dr Isik for a consult just prior to my surgery. He came recommended from both my breast surgeon (Dr Rick Clarfeld at Overlake) and my oncologist (Dr Henry Kaplan at Swedish). I had a bilateral mastectomy with delayed reconstruction (w/ skin sparing) so besides the initial consult and some sharpie drawings all over my chest (prior to my bilat mx) I don't know Isik very well, but am 99% sure I will use him for reconstruction later this summer when I am done with chemo.
As for Kaplan...I personally feel like I owe this man my sanity, if not my life...and would recommend him to anyone. I have had some ups and downs with my chemo but I wouldn't change anything. I really like Swedish, and if it weren't for the fact that I am in Bellevue, I think we (my family) would get all our care there. I LOVE Dr Kaplan!! I dont know Dr Dawson, but if she has been recommended to you, I would definitely get an appointment to meet her. One thing I have found is that there are a lot of really smart competent doctors here in Seattle (we are sooo lucky) but the hard part is figuring out who to go with and where you get your care/treatment.
When I got my *news* and was literally dazed and confused, another bc survivor told me I should meet with an oncologist asap. That person can help translate the pathology report and give you an idea of the process ahead. That person is also going to be in your life for sometime...as opposed to your breast surgeon and plastic surgeon who will be seeing you through the physical surgical/healing steps. That advice helped me figure out quickly what I needed to do.
How much information do you have on your dx and do you feel comfortable sharing it?
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Morning everyone, well steroids have done the job. Been up for awhile. What else is new?
Chefgal I'm at Providence in Everett but one of my co-workers was at Swedish and her docs were Christine Lee the surgeon who did her surgeries and Kristine Rin her oncologist. She loved both these women alot. So maybe you want to check them out as well.
Collette I can relate to chemo brain, sometimes the animals at this house have to point to the clocks in order to get fed on time!
Hope everyone has a great day.
Tina
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Tina, you aren't kidding about the steriods! I lay in bed and watch movies.
Dr. Lee will be my general surgeon that I am meeting for the first time Friday. It is good to hear that people really liked her because I am in Olympia I don't know who is good and who isn't. The reason for my going all the way to Seattle for the surgery and immidiate reconstruction is because that is the closest place that our insurance would pay for that kind of operation.
I hope you have a great day too! At least it seems today is starting off better than yesterday.
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Chefgal - I am another Seattle (Bainbridge Island actually) IDC gal popping in to welcome you to this thread. We do have so many great choices in Seattle so I guess we are lucky.
You are at a very difficult time - getting opinions, second opinions and picking your "team". Gina is so right about really liking and having confidence in your oncoloigst. They are the one you will have a long term relationship with. Of course, you need to have confidence in all the docs.
I am working with a team at Seattle Cancer Care Alliance.
TIna, Collette and everyone else - hope you all have a great day. Hey - where did the sun go??????
I had to put our heat on this morning!
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April, That is what I am wondering!?! I want the kids to go outside and they can't with this wet stuff falling all the time! Also with all the wet stuff increases the likely hood that they will continue to be sick!
Maybe we should do a "pow wow" for no more rain?
Colette
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Chefgal, my oncologist is Dr. Kristine Rinn at Swedish Hospital and I LOVE her. I have also heard fabulous things about Dr. Kaplan. I used Dr. Beatty at Swedish for my surgeon and he was great. His staff was fabulous and my scarring is *lovely* (if there is such a thing). You are doing the right thing by researching, make sure you are comfortable with whomever you choose as you have to trust them with lots of decisions.
Also, I think I mentioned to some of you that I would be having some reconstructive surgery and a reduction (I had a lumpectomy). I met with Dr. Miles at Swedish today to see if my skin was ready after radiation and she said my skin looks fabulous! I have scheduled my surgery for June 5th and I could not be more excited. She will also remove my port.
One year ago today is the day that I got my diagnosis. I don't know if this is officially my one year cancerversary, but I'm going to celebrate it like it is!
Tracy
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Tracy - Congratulations...especially with the good news about reconstruction! Any reason to celebrate is reason enough!!
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Party on Tracy...so you'll have the remodeled "girls" to show us on the 17th?
Chefgal...I'm also at Swedish but the comprehensive Breast Center at Cherry Hill...BS was Claire Buchanan (a surgical oncologist)she has offices at Cherry Hill and Main Swedish...also fabulous and David White Onc/Hematologist at PolyClinic *(also part of Swedish now) .
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Hey Golfergal and other local CMF'ers...any of you develop an annoying dry-cough during treatment?
It's not all the time but I have it 1-2x per day ..of course I Dr. Googled..again...bad girl...I do see my PCP Monday and have CMF # 4 next Friday...but I am curious...
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Tracy - congrats on both the cancerversary and the surgery date! Very exciting!
Swimfan - no I have not had a dry cough. I do, however have constant metal mouth now. That just started the past week or so. I am assuming a cumulative effect....I go in tomorrow for #18 and will have 6 left.
What did Dr. Google say? I hate to think. Don't go there, call your doc.
Susan
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