advice in retrospect?

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kasey56
New Member


Date Joined May 2007
Total Posts : 14
   Posted 5/7/2007 8:14 PM (GMT -7)   
Hi! This is as you know difficult for someone to join a group like this - because it means you might have cancer. But I also am going crazy and need some subjective opinions from some people that will understand. Thanks. 6 weeks ago my screening mammo showed suspicion for DCIS, went the next week for a diagnostic mammo that could not rule it out and they suggested an excision biopsy for ?DCIS. Went to the surgeon suggested in the smaller town north of here (because my GP figured the waitlist would be shorter) which of course took 2 more weeks and he says he would rather do an ultrasound-guided biopsy so that if it IS positive for DCIS he can then do surgery including a sentinel lymph node biopsy. Have now been waiting more than a week to hear when they will do the biopsy and I'm going crazy bouncing between "relax and be patient" and "scream and shout until someone gets moving on this"!
From your experience, and in retrospect, should I be "waiting patiently" or "screaming and shouting"?
Should I be looking to have a second opinion with a second surgeon whilst I am waiting for the ultrasound biopsy?
Should I be asking to see the BEST surgeon even if the waitlist is longer or should I be seeing the QUICKEST surgeon?
I read on the internet somewhere that for a surgeon to have good results from sentinel lymph biopsies, he has to have done at least 30 with following full lymph node removal in order to doublecheck his expertise - otherwise he may have false negative results.
Would really like some input here from someone who has gone through this...mostly - should I be just relaxing or should I be shouting?
Thanks! Going nuts!
Kasey
 

Rhoda
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 5/8/2007 4:55 AM (GMT -7)   
My heart goes out to you for having to go through this. I don't know what to tell you about being patient or screaming!! For myself, I would get into ANYONE to do the biopsy to find out for sure what it is, then make the decision (if needed) which surgeon and where to have any necessary surgery. This is just what I would do for myself, you need to decide what is best for you.

Another option - CALL CALL and then CALL that surgeon's office again until you get in.....Don't wait for them to call you. Don't be afraid to be proactive in your medical care!

Good Luck! Rhoda

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 5/8/2007 5:15 AM (GMT -7)   
Hi Kasey! A week or two of waiting is not going to hurt anything. I know waiting is horrible, tho. Not every surgeon is experienced in doing the sentinel node biopsy, altho as it is becoming more common I imagine more have learned to do it. From what you have told us about the surgeon and his plans it seems to me he is knowledgeable about what needs to be done to do the best for you. So hang in there and meanwhile feel free to come here and post and ask questions. There is a wealth of information available, even lots here on Healingwell. Read and learn all you can so you will be well informed and able to ask questions. Hugs Mary K. MK


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 5/8/2007 8:48 PM (GMT -7)   
As with any medical problem, it's very common to "hurry up and wait." I agree with MK, that if your doctor is recommending someone that you have to wait for...it's probably worth the wait. Someone who is experienced would seem preferable...but there are many "experienced" doctors who aren't worth diddly, imho. My doctor told me that, if I were his wife, he would send me to the surgeon he recommended to me. I didn't particularly like him, but he was a really good surgeon.

A week or two of waiting is not going to matter that much as far as prognosis. They say a breast cancer is there for 8-10 years before it is detectable. And all things considered, it could be nothing.

So take a deep breath, try to relax, and hope for a good outcome on the test. We be hoping for benign results for you...we don't really like having to welcome new members to our club, as you can imagine!

Let us know how it goes.

BEV

coopfesta
Veteran Member


Date Joined Sep 2003
Total Posts : 1373
   Posted 5/9/2007 7:25 AM (GMT -7)   
OK, First, BREATHE.
 
Now, know that gma and barkyboys are both veterans who have been through this with many members and themselves as well.  I have too, and can tell you that confidence in the process is really helpful.  Having said that, the things the doctor told you about the biopsy sounds like he knows what he's talking about.  He sounds like he knows the process.  I had a needle-guided biopsy, and that was the true way to know what I had.  After my biopsy came back positive for cancer, I had opted to wait two weeks for that surgeon to return from a trip because I trusted him and had confidence in him, rather than try to get on someone elses schedule a few days earlier.  He said it wouldn't make a difference, and while I didn't TOTALLY believe that, I did trust and sure enough, my nodes came back negative, it didn't metastacize in those few days I waited.   
 
You'll wait for results too.  Feel free to post your worries and we'll be waiting with you. 
 
Good luck, and keep posting
"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius
Don't knock on Death's Door.  Ring the bell and run.  He hates that.

Ellen


kasey56
New Member


Date Joined May 2007
Total Posts : 14
   Posted 5/9/2007 7:30 PM (GMT -7)   
Thanks to everyone for your advice and support - I know I will refer back to it on bad days! I know I am totally stressing - couldn't fall asleep last night so got up and had a glass of wine and also a good cry! It doesn't help that there are a half dozen other major stresses in my life right now too - but that's probably just how life goes, isn't it? I don't think it would be so bad if they would just call and give me a date or even an approximate date for the biopsy instead of just silence for the past two weeks! Makes you wonder if they forgot you - that's the main reason I keep phoning them - just to remind myself that they haven't! But I was also thinking that's why we are called "patients" to the medical profession, right? I am a nurse (but working in a longterm care home)...but never realized the cold humor in that word... lol ...it looks rather different from the other side! I feel rather guilty too when I know that you all are or have been fighting battles with cancer and I'm falling apart when it's just suggested that I might have it. Anyway, I live in BC, Canada and my name is Kathy but I see there is a Kathy already so will stick with Kasey...that was my nickname when I was a child anyway! Thanks again and I wish you all the best in your own battles!
Kasey

hazeleyez
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/10/2007 2:55 PM (GMT -7)   
Kasey, I too am waiting results.  I had a mammogram 5 years ago with microcalcifations, had stereotatic biopsy, found out it was precancer.  Now I'm waiting on results again from having more calcifations in same breast.
The emotional part of waiting is a true roller coaster, and having friends and family that are caring and understanding is helping me out alot. 
Not to mention ..  praying ....lots and lots of praying.  My prayers go out to you as well, and all others on this site.  I'm new here, and have found comfort in reading what others have to say.  My name is Lisa and I'm 37 with a family history of breast cancer.

Candy
Veteran Member


Date Joined Jul 2003
Total Posts : 1294
   Posted 5/12/2007 5:02 AM (GMT -7)   
Like Ellen said "Breathe"! It sounds wierd but once decisions have been made about B/C possibilities and tests have been decided on and what type of therapy you need, it becomes NOT AN EMERGENCY. When I was diagnosed everyone kept telling me to take time to make decisions and find the right doctors (not a lot of time but some time). Rhoda gave you some good advise, CALL, CALL, CALL.
That should give you some relief and maybe an answer.  Sounds like you are waiting on a good doctor and that maybe why you have to wait so long, because he is so good.
 
You are in my prayers along with all these Breast Friends.
 
Hugs,
 
Candy


Two are better than one, because they have a good return for their work: if one falls down, his friend can help him up.  Ecclesiastes 4:9-10
 


kasey56
New Member


Date Joined May 2007
Total Posts : 14
   Posted 6/13/2007 4:10 PM (GMT -7)   
Thankyou for all your support! My computer hard drive quit on me so had to buy a new computer and then couldn't remember where I found this site! But I found you all again! Thanks!
Well, the best advice for me was to become pro-active. I finally got a call for the ultrasound-guided biopsy...went in and the tech did the initial ultrasound and the radiologist came in and told me I had been booked for the wrong type of biopsy for what I have!! He said I have no "mass" so the ultrasound-guided is not effective - that I now needed to be booked for a steriotactic needle biopsy in another department! Thank heavens I had gone and seen my GP by this time and asked for a second opinion...the appointment with the second surgeon was later the same day. Went and saw him... NIGHT AND DAY! The first surgeon's office didn't seem clean, the staff not friendly, the surgeon himself seemed distracted when he was seeing me, he disagreed with the mammogram people as to what should be done and then I didn't hear anything for 3 weeks before getting a call for the (wrong) biopsy. This new surgeon is closer to home, seems like a great guy, seems very competent, agreed with the mammogram people that I should have an excision biopsy (he said a needle biopsy will only tell us if I have cancer in a very tiny section...and I have a cluster of them...), said he can still do a primary node biopsy if needed after the excision biopsy (the first fellow said not)! I just have way more confidence in him and his staff - what a relief!!! I now have a surgeon that I feel good about and a good plan for "in case", have a date for June 18 for the excision biopsy, BW, EKG done, etc. already....and no more stress! I have the "best" surgeon rather than the "hopefully quickest" surgeon and I haven't stressed an iota since I met him!
And you know, the worst thing about the whole deal is that I was waiting to see how long it would take for the stereotactic to be booked and still hadn't heard anything (since the aborted ultrasound-guided on May 23) so I phoned the first surgeon's office yesterday and no...he hadn't heard anything about me needing anything new booked and the office staff seemed unconcerned - she said well, these things take time! So I told her I had switched surgeons anyway...thankyou very much!
It's all about TLC isn't it? It's all about feeling confident that you have a team working for you and you have a solid plan. Thanks so much for you support!
Kathy

postal2
Veteran Member


Date Joined Jul 2003
Total Posts : 1106
   Posted 6/14/2007 1:10 AM (GMT -7)   
Kathy, it sounds like you are in good hands now! I know how hard the waiting is, and unfortunately, we seen to wait a lot in the beginning. You are in my prayers for benign results and please keep us updated.
Hugs, Gail
  It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
 
Elisabeth Kubler Ross


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 6/14/2007 5:09 PM (GMT -7)   
Hope all goes well on the 18th. Sounds like "the best" was worth the wait. We'll be happy to hear "benign." Let us know how it goes.

Hugs...
BEV

kasey56
New Member


Date Joined May 2007
Total Posts : 14
   Posted 6/22/2007 12:20 AM (GMT -7)   

Well, all went well enough with the biopsy on the 18th...lots of bruising and swelling but it's going down....now I'm just coming down with a darn good cold...too much stress and not enough sleep, etc. Was out for supper with my kayaking buddies for pizza and kayaking videos tonight and when I left I was driving away I was in tears. I'm thinking that by next week when we should be doing our regular paddling day I will know if I have cancer or not...and darn-it I don't want it! If anything, I tend towards Buddhism and the Buddhist philosophy is to not "wish for" or "wish for not"...just deal with what happens. Ok...so I'm sitting here with a glass of wine and not being a good Buddhist and not being strong like everyone thinks I am....we discussed the fact that I may not be ready to paddle next week but we never discussed the fact that I should know by that time that I do have cancer or do not have cancer and that my whole life may be disrupted let alone my kayaking. I'm tired of being strong - I'm single and have been the strong one in my life and everybody elses' lives! Now I can hear the dog in the condo upstairs from me pacing on the deck...he hears me crying, doesn't he? I know...as you go through life it looks like everyone elses' lives are going along just wonderfully, doesn't it - but I do know that everybody has their own pain to go through and we try to keep it to ourselves so as not to burden other people but it actually probably makes them feel alone, doesn't it? The two people I was with tonight are very good friends and I suppose I should have shown at least a bit of what I was feeling - or maybe they did know. We hide too much don't we - maybe if we share our pain it might make it easier for the other to share their pain as well and not feel alone. I know inside myself that we are not alone - I do feel that we are all connected and that we all make a difference in each others' lives. I also know that you all (of anybody!) understand all of this and my feelings right now and thankyou so much for listening...and I will be ok in the morning - we just have to let loose sometimes.

Signed...Just Destressing a Bit (and maybe learning a lesson or two at the same time) and I hope making someone else feel not alone in their times of stress...

Love Kasey


babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 6/22/2007 2:50 PM (GMT -7)   
Kasey,
 
What you are going through is perfectly normal.  It is a very anxious time waiting for the results, but at least you found a good surgeon.  That makes all the difference in the world.  I chose to share what I was going through with everyone in my life.  I know others who don't want to burden friends and family at times like this, but you need support and who better than them?  We each handle things in different ways and you will do what is best for you.  We are all here for you waiting to hear the news and hoping it's B9!  Either way, you will get through it.  We will hold your hand.
L & H,
Kathy


kasey56
New Member


Date Joined May 2007
Total Posts : 14
   Posted 6/29/2007 3:51 PM (GMT -7)   
Thanks you guys - started a new post with my Dx.
But just was wondering and hoping sincerely that Hazeleyez got her results back and they were clear.
Hugs,
Kasey
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