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Monarch View Drop Down
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    Posted: Jun 21 2019 at 11:46pm
I started my journey like so many of you.  Time has not been my friend.  This week, I got the news that I had Metastatic Invasive Ductal Carcinoma, grade 3 tumor, Stage III with axillary positive lymph node.  The PET/CT scan revealed that in two weeks, it had grown from a 3.5 cm to 5.0 cm, and my thyroid was showing a hypermetabolic mass.  

I love my surgeon, but do not feel the same on my oncologist.  I felt like he was trying to sell me a "bill of goods", promising health after five years and no worries.  I wanted to talk about reoccurrence rates for my stage in years 1-4.  He diverted down a different path. He didn't seem to care about the thyroid.  He didn't seem to want to know if it was breast cancer or another primary cancer.  I do.  If it were breast cancer, that would move me to a Stage IV.  I felt my questions were rushed and diverted.

Knowing how fast and aggressive the tumors are, he chose to make me wait 2 and a half more weeks until I start my neoadjunctive chemo therapy.  I am single and live by myself.  I have a large family but they are not supportive.  I don't know what it scarier, the fact that I cancer or the fact that I will be alone in this.  

I am having my chest port put in next week, then I sit and wait.  I am concerned about the protocol therapy.  I am highly sensitive to most drugs.  3.5 years of prednisone and Imuran for auto immune has left my body with an empty gas tank going into this fight.

Now I am told that my insurance doesn't cover some of the drugs that they are trying to give me.  I haven't even sat down for financials.  I have found comfort in some of the films I have seen on YouTube about Robin Roberts and Joan Lunden.  If anyone has any advice, please feel free to share.  I feel like I am in a dark room trying to find the light switch.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2019 at 10:16am
I am so sorry you've gotten this diagnosis, and even more sorry for your feelings of despair. Did they say it had grown that much in that short of a time, or did they measure it first by mammogram and ultrasound, then change the size after the PET and CT? That isn't uncommon, since the PET gives a far better image and better measuring capability. If you aren't sure message your surgeon ASAP and ask - did it grow that much or did the measurement change?
I see you are in Dallas? so am I. Do you have insurance that allows you to choose your doctor & facility? What you need is a second opinion ASAP. If you aren't at UT Southwestern, and you don't have restrictive insurance, let's get a second opinion set up there ASAP. If you are at UT (which I highly doubt?) Then let's speak to Steve, a professional patient advocate here on this board, and see if he can get you into MD Anderson for a quick second opinion. It's only a four hour drive. I've had this disease twice, and did both of those things, and both times the second opinion changed my treatment plan and both time it went well. 
Thyroids light up - thyroids grow masses - thyroid grow masses that are not dangerous - thyroids grow masses that aren't dangerous that they just leave alone forever. I know this because 3 years ago mine lit up on PET, after much testing its nothing. I just had another thyroid ultrasound and blood work to make sure. It's still nothing. Superfluous junk always shows up on scans, they have to further test to make sure it's not mets, but usually it's not. before they start ANY treatment, a follow-up ultrasound and thyroid bloodwork has to be done. 
If you look around here you'll see that one of the most common things Donna, I and the other "oldtimers" around here say is, this time at the beginning, the diagnosis, first onslaught of tests, scans and whirlwind Dr. appointments is the WORST. The waiting but not knowing, the Googling that scares the bejesus out of you, then they expect you - YOU, little old inexperienced you, to make life and death decisions! it's torture! But you'll get thru it. It will all come together. But your instinct here to reach out to others with this disease was a good one. You're already making good decisions Thumbs Up and you are not alone. Your instinct to worry about your previous autoimmune issues is also a good one. And the best reason yet to get an opinion from the best doctors we can get you into. And it can be done quick! Another recently diagnosed person here on the board just went to John Hopkins for a second opinion, and she was diagnosed like 2 weeks ago. So seriously - another set of smart doctors is what you need. The best are usually at a non-profit, teaching and research hospital. We can help you figure it out of you're game. You're going to get thru this, you're smart and have good instincts and that will serve you well! Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2019 at 12:50pm
Kelly,

Thank you for your quick response, and to all the other senior members that take the time to guide us newly diagnosed.  I cannot even tell you how much that means to me since I am in this alone!  I have actually waited to find out the diagnosis since the first phone call came in on 4/6 until now.  This was my second opinion.  

The first happened to be a well known and respected breast surgeon in Dallas, I gave a "no vote of confidence" on my first visit.  There was no urgency about anything in her office.  She actually seemed to be having trouble remembering our short conversation. I couldn't see her being the one to remove my breasts.  

I came home that night and found one in Arlington. I hand-walked everything I had into the office for her to review, since I had previously called 7 surgeons and only two had called back.  She was in surgery all day, but instructed her staff to work me in the following day in her Keller office for a biopsy.  Finally someone to biopsy this monster!  I liked her.  She was young, progressive and has a tremendous educational background. She was aggressive, like my cancer.  

She told me the bad news that it was TNBC with an axillary met.  She wanted me to go to an oncologist in her Bedford office, but when they checked, that doctor's  first appointment was three weeks out.  The surgeon said I could not wait, that the tumors were aggressively growing at a very high rate, so I took the first available I could get.  Ki-67 was 70%.  

The ultrasound initially measured 3.5 x 2.2 x 2.1 cm.  I did my MRI in one hospital and as I was walking out the door, scheduling from the Dallas hospital called for my PET.  I told them they were still trying to get the pre-cert and she said, "No, we have waved that.  You need to be in Dallas tomorrow morning (on a Saturday).  The PET indicated it was 5.0 cm, with an axillary node of 1.9 x 1.9 x 1.4 cm.  I will be getting a biopsy Monday on the Thyroid.

I will say this about the company I work for.  I work for a very large hospital system.  As employees, we are pigeon-holed into their system, or we have to pay 80% of all cost in network.  They determine the medications I will receive for chemo, or the tests I will receive.  I was already told by the oncologist, my company does not pay for certain IV meds that I will need, that they typically want to send me home with PO chemo meds (which is a problem because I have a malabsorption issue).  They will also not pay for Neulasta, which he said I will definitely need.  They thought they might have to transfuse me prior to chemo, because my anemia is getting worse.  

So, I am trying to navigate an already tight situation with another layer of hoops I have to jump through with my work/insurance. So, it's cancer with the grips of a giant insurance company, with an added twist.

As far as MD Anderson, my insurance will not pay out of network.  I actually called 7 surgeons trying to get the initial biopsy. One was from MD Anderson in Arlington.  No call back was received. Only two of the surgeon's returned my call which I felt was completely unacceptable. 

As far as my game, I am actively trying to make things happen but no one seems to be in a rush to do anything.  I just don't want this to spill into other nodes or organs.  That would be a completely different outcome.  

Any information or resources anyone might be able to provide will be greatly appreciated.  I called my insurance company to get a cancer advocate to help navigate me through but I had to wait three weeks for the initial call.  That will be next Thursday.  That was all I knew to do.

Monarch


  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2019 at 3:12pm
Kelly,

Also, my regiment that I know about is going to be the following:

Doxorubicin and Cyclophosphamide every two weeks for 4 sessions.

Then,

Paclitaxel every week for 10 weeks

He mentioned others like Decadron and Nuelastra and anti-nausea but I am not sure the amount.  He did say the Nuelastra was every week and is $6,000 per shot.  

A month for my body to "cool off", then surgery on the breasts, followed by radiation.

I think from what I have seen in this forum, this is somewhat standard.  Does that sound right?

Monarch
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 1:40am
Monarch,

I'm so sorry you are dealing with insurance issues and medical people not calling you back.  It's not right.  Can you ask your oncologists office if there are any resources to help cover the cost of the nuelasta shot?  Usually the Nuelasta shot is given the day after chemo for Doxorubicin and Cyclophosphamide.  You probably won't need it for Taxol.  I can't believe your insurance won't cover it.  When I had it 10 years ago, the cost was almost $13,000 a shot, but my insurance covered it.  It kept my white blood count normal during chemo.  Will your insurance cover Neupogen shots? 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 12:23pm
Donna,

Not sure about the drug you listed.  I will have to check Monday or Tuesday.  I am going to attempt to get an appointment with another colleague in their group.  It all depends on how far out they are on appointments.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 12:23pm
Hi Monarch
   Hopefully I can add some insight from the standpoint of one who went it alone, like you are.
   As you can see from the bottom of my post I had a monster of a tumor set and it too grew rapidly. The time lapse from being dx'd to getting started for me was almost 2 months, but I ended up using that time to get 2 more opinions, the last of which I went with because it included the opportunity to join a clinical trial that literally threw the kitchen sink at my tumors.
   My family was somewhat distant, not real supportive, but that was partially because my two sisters ended up being dx'd within 6 months of me. They were dx'd with low grade tumors and chose not to be aggressive.
   With encouragement from members here as well as the oncology team I chose we all agreed to be aggressive as possible with mine. My sisters didn't make it. I did. So, in a peculiar way, having a dx of a really scary situation, plus being on your own, meant to me (and probably will to you to) that I didn't have any fallback options, I had to do as much as I could in the first round.
   I took the neupagen, gave myself the shots and I would suggest that you see if your oncologist has a 'social worker' in their office and then take advantage of that service. The social workers are linked in really well to all the services and financial aid that is in the cancer world. Things like Komen that will offer to help with bills (it's not much but every penny counts, eh?).
   Lastly, for now, please keep coming back as I know first hand that the family here is flat out wonderful at having your back and helping to choose the best course. Also, do get in contact with the admin here and see what the Tneg Foundation has to offer in the way of help.
   Oohh, get your VitD levels checked, they are probably low but good news is that otc meds are really pretty cheap and it's something that will help you fight!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 8:13pm
Oh man, I am so sorry for your crappy insurance! It's criminal that we allow for profit insurance companies to make billions by treating humans this way.  The Neupogen is cheaper, and if you're squeamish about giving yourself the shots I'd be happy to come over and do them for you. I'm not a nurse, but I've given a lot of shots to dogs and cats and a few on humans. It's a simple subcutaneous shot (just under the skin), not an injection to the vein. 
It is worth reaching out to the pharmaceutical company as well. It says here a dose is over $6000 - equally evil - https://www.neulasta.com/support/?gclid=CjwKCAjwxrzoBRBBEiwAbtX1n2r8Bk4OwZ2DW2w0Gf6oXCq1bdhDl8NF-TOzkk9Taa5JSITanzz7ghoCEhgQAvD_BwE&gclsrc=aw.ds#neulasta-cost - click on i am uninsured, it says also for underinsured. 
What's really ridiculous is, not allowing you the shots puts you at much higher risk for illness or infection. One hospital stay for that will cost way more than all of these shots. 
Did I mention I had a positive lymph node the first time? They removed all of my lymph nodes in that side in January 2009. I've not had any lymphatic problems so far. If I wound that arm i make sure to take care of it, but other than that it's NBD. 
You're doing all the right things being proactive the best you can within your insurance restrictions! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 10:42pm
I give myself shots all the time because I am anemic, so B12 injections.  I also have very low vitamin d.  They had given me 50,000 UI of D2 every week but I changed that to an over the counter D3 and I take 10,000 to 15,000 per day.  It keeps the levels constant since it acts like a hormone and not a vitamin.  It has done well for me.  I am so sorry about your sisters.  My heart goes out to you.  Loss is never easy.  I donít know much about TNBC but I am a strong listener if you need to talk.  That you for the offer to give me the shot.  I am so glad I found this group.  It has been the only thing that has grounded me.  I havenít even spoken with God yet, or cried and just released it all.  I did do something for me today though.  I got a breast cancer hat, scrub cap, and hope pick bracket.  I will wear them proudly in my fight!  When it comes time for the hair, I am going to just shave it and be done.  It is the one thing I have control over in this scary time in my life.  I will check out a counselor.  They didnít say they offered one.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2019 at 11:54pm
Monarch, this is brand new for me too so I donít have the tnbc knowledge or experience these ladies do. But Iíve found having my notebook and a 3 ring binder on me at all times keeps me grounded. Occasionally put notes in my phone and transfer to my notebook later. Helps me remember questions and things to research. And keeps me busy while Iím plodding from one waiting room to the next.

Call the American cancer society and your local groups to get additional resources in your area. I saw a Ďlookgoodfeelbetterí site that does clinics to give you tools and tips on makeup etc when your in treatment I think will be a neat thing to attend. Iím going to ask for a referral to palliative care tomorrow. Mentally Iím good right now but I think they offer nutritional guidance etc that may help me alleviate the not fun effects of chemo. Trying to find small things I can control so I donít feel as much like a sitting duck with all the things I canít control. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2019 at 12:24pm
Danzig - you are SOOO right to keep a 3 ring binder notebook! Mine was a life saver so many times, not just to keep me educated but to ask questions and actually a couple of times to catch the doctors and nurses when they made a mistake. They're only human and we know our bodies and records better than anyone.

I kept copies of all bloodwork and all scans and various notes about side effects and my notes included handwriting in definitions of all the new words that were being flung at me by the medical team. It was like learning a whole new language!

I would also suggest keeping the forum link on your phone so that if something comes up that you're pondering in the doc's waiting room you can post your question here.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2019 at 2:14pm
Ok, I just received my MRI results back.  This monster inside of me is growing so fast.  It was 3.5x2.1x2.2  on 6/6/19.  I had an MRI on 6/14/19 and it is listed as 5.6 x 3.3 x 3.5 cm.  My node is 1.8x1.8x1.8 cm in my axillary area.  Certainly not as big as Mainsailset, but huge nevertheless.  I want this thing out, or chemo to start soon and I am not even on the books.  Getting nervous.Disapprove

Monarch
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2019 at 7:55pm
Monarch,

I'm so sorry that it's grown.  Hope you can start chemo soon.  Also ask if you qualify for any clinical trials in your area. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2019 at 11:28pm
Monarch, I had several different scans during my first month and they varied in size quite a bit so in an effort to calm your nerves I wouldn't be surprised if the same thing is happening to you.

Do take the time to check out the clinical trials that are available. One of the things that I found was that being on a trial the pharma that offered the trial wanted participants to do well so there was an extra level of scans and bloodwork done that they paid for. It was also comforting to know that there was a 2nd level of professionals getting copies of my results and reviewing them.

I really hear you about getting it out, but please consider that once it's out there's no way to really check on your progress undergoing chemo. When the tumor is being affected by the chemo it will start to soften and your onc can check on that during your office visit...when the tumor's gone he/she wouldn't have that tool to help evaluate. Strangely, it took about 6 wks for mine to start to soften but it was the best kind of news to see the doc's face when he felt and told me the news. From then on I looked forward to his checks and hearing that it was really changing and finally that it was getting smaller. Gave me a feeling of beating the beast, especially when I was feeling down int he dumps!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2019 at 11:57pm
The smaller it is at surgery, the better the statistical outcome as well.
I don't know if I've mentioned lately why I didn't do chemo first the first time I had cancer. They notched my biopsy, missed it. I got talked into getting the lump removed instead of another try at biopsy. Woke up with a Large partial mastectomy, ALL lymph nodes gone, 2 surgical drains and a lot of pain. They gave us zero info on how to care for the drain. 2 days later I had 105 fever. A week later I went in to get the drain out. We'd already realized my surgeon was an agressive, self absorbed asshat...as we were leaving I asked the receptionist if my pathology was back? She handed me a few sheets of paper. That night I read all by myself that it was TNBC. I changed surgeons (for dr. Euhus thank God) and hospitals the next day. I think I found this place that next week Heart and after much research I learned the most heinous thing that Dr had done was taken away my ability to do chemo first.  Hell, he'd taken away the option of doing a mastectomy first - all of it should've been my choice. So I've suffered through bad medical care. I would've done chemo first. My lymph node would probably have tested negative at surgery if I had, and I would not be living with zero axilla nodes. There's a lot of reasons for doing chemo first. The are legit reason to do surgery first, but if it's just fear making you do it, try to get past the fear and make the best medical decision on which to do first. This second time we did ultrasound and measured every 4 weeks thru it all. They could measure and see if it was working. We've had women here that the chemo did not work, they were able to change drugs and find the chemo that did actually shrink the tumors. If it hadn't been chemo first, she'd never know that the chemo she was doing did nothing to eradicate her disease. 
This last time they measured my tumor by ultrasound and mri and both were different. Went to MDA and their measurements were different. It's like measuring babies before their born - they never get it quite right. They could tell when chemo was shrinking it tho! That is indeed a good day, when the sucker starts shrinking. 


IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2019 at 8:45am
I am totally fine with chemo first.  I just donít understand what is taking so long.  Port goes in Tomorrow.  I donít even have my financial visit until July 1 and that is a short week due to the holiday.  I have no clue when they will schedule my first chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2019 at 9:16am
Danzig,

Mainy's advice about the binder is excellent.  I bought one of those plastic totes that hold the green hanging file folders.  Believe it or not, it's pretty full after all the treatments I had.  Keep a folder or tab for all your medical billing.  If you can organize it by procedure, then the separate bills you receive for that procedure and your EOB.  You'll know if you are being overbilled/charged for any procedure.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2019 at 9:17am
Monarch,

Can you contact your oncologist and see when chemo will start? 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2019 at 9:25am
I have already done that last Thursday and I have not received  An answer or callback/email.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2019 at 4:34pm
Monarch, do consider making use of this time to get a 2nd opinion. Like I said above, I had to wait almost 2 months so with some encouragement from friends I got a couple more opinions and another biopsy.

When a doc doesn't respond to a question like when are we going to get going with chemo it's also an indication of how he'll respond down the road when other things crop up and believe me there's ALWAYS something that crops up...a fever, an odd reaction or pain...

My 3rd onc, the one I settled on, was going over reports and I remember my sister standing up with her best sisternly stern voice and saying, 'so when are you going to get the show on the road?' he blinked a couple of times and said, 'well, how about Thursday?'. I miss that sister.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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