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Newly Diagnosed Support

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LaurieB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 11:00am
Hi Katherine,
 
First of all, have you gotten a 2nd opinion?  Everything that I have read and been told is that BC is NOT a "medical emergency" and that you have time to research and talk to people and make informed decisions.  Most insurances want you to get a 2nd opinion.  I talked to 2 oncs and 2 surgeons, and they all recommended the same course of treatment.  That made me feel better.  Maybe you could call the American Cancer Society and ask them what they can recommend about places that you can seek out info in Switzerland. 
 
My tumor is large (5 cm) so I will be having chemo first, then surgery.  I am leaning toward a mastectomy.  I have asked this question and have a post on this site "Mastectomy for TNBC"  if you want to look at that to read the responses. 
 
I was diagosed 10/5/09.  I am 35 and also have 2 boys.  I should be starting chemo this coming week.  I am doing a clinical study.  It is not for Trip Neg, but uses one of the drugs that they have been testing in advanced Trip Neg (although my tumor is large, all of my scans were clear, so my onc said that I was still early stage).The drug is Avistan. 
 
You are not alone, this is a good site, but also join the Network of Strength.  It has a bunch of wonderful ladies that have helped me through some of my dark moments.  They also have a 24 hour hotline that will match you up with a survivor with a similar diagnoses that will explain things to you.  The # is 800-221-2141.  Please call them.  They will help you.  I will send yo a private message with my email and you can email me whenever you want.  I will help you filter through any info that I can, in English. :)   The most important thing is to stay positive and make sure that you have understanding of your treatment.  We can go through this journey together.
 
(((HUGS)))
Laurie
I am healing!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2012 at 4:33pm
Hi newly diagnosed and everyone else,

Was looking for a prior thread and while searching found this thread for: Newly Diagnosed Support.

There are many options and ways to post on the forums when you first start using this website.
       When one is a new member, one can "introduce" oneself on:
       http://forum.tnbcfoundation.org/welcome-fromtnbcfoundation_topic8&FID=3&PR=3_page239.html
      One can start a new thread:
              Go to a forum. Click on   " New Topic +".
      One can add a post on a particular topic to an already existing thread on that topic.
When I saw this already existing thread, I thought it might be helpful to bring to top of list.
This thread might be a place to post " when one could use some support today"
   AND PLEASE REMEMBER one can also start a new thread for one self for support.
One of the great things about this website is that one can use it as it is most helpful.
For some, reading the posts is helpful. For others, reading and posting are helpful.   

Sending lots of caring and supportive thoughts to the newly diagnosed and all,
Grateful for today...............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2012 at 5:31pm
Hi,

Sloane-Kettering website has a great video on support by Dr. Massie, Psychiatrist
on Psychosocial support for breast cancer:
    How to ask for help.
    How to talk to friends.
    How to cope with depression.
    How to deal with spouse's emotions.
http://www.mskcc.org/cancer-care/adult/breast/multimedia/psychosocial-support-breast
is the direct link found on thread http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html


It is very important to know that there are many survivors of triple negative breast cancer.
It is important to know that many newly diagnosed and those with recurrences
post on this site. But there are many survivors who do not post.....they are so
busy living their lives.
In fact, there are a few forum topics about survivors. One is:
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

Knowledge is power.
If you want a thread that has some of the places on the website to start to read and
learn about TNBC:
    http://forum.tnbcfoundation.org/information-on-tnbc_topic10166.html

With caring and supportive thoughts,
Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2012 at 11:34pm
Hi,

There is a thread with Hopeful quotes and other.
Quotes are from a Cancer Center website.   Some are philosophical.
Thought everyone would not find all the quotes helpful.
But there might be one or two quotes that might be helpful at some time for some.
The intent of posting the quotes is to be helpful......not to preach or be a Pollyanna!
http://forum.tnbcfoundation.org/hopeful-quotes-and-other_topic9897.html

A member of the TNBC forum, Laura Roppe, has written a book, a magazine article and
recorded CDs.   She has a web site.
A prior thread has this information.
http://forum.tnbcfoundation.org/great-read-article-by-laura-roppe_topic9871.html
Book: Rocking the Pink
            http://www.amazon.com/Rocking-Pink-Finding-Myself-Cancer/dp/158005417X/ref=sr_1_1?ie=UTF8&qid=1326125029&sr=8-1
Songs: At her website: http://www.lauraroppe.com/        See "Music" and "Videos".
Article:   Link:    The pdf version is easier to read. Article starts on page 27    (Spring 2012 issue)
     http://www.breastcancerwellness.org/go/magazine/
     From her article:
     "Then, just after the mid-way point of my chemo treatments, I remembered something I'd learned
not too long before: Just put one foot in front of the other, and never quit.........
I made a list. My girls and I sat down every day to write down the things we imagined ourselves
doing when my treatments were finally over. Big things, little things, silly things--anything that
made us smile. "We'll have a picnic in a meadow, and watch the sunlight dancing on Mommy's
new hair". Every day, when I was feeling overwhelmed or blue, I summoned the girls and we added
to our list of future smiles. I trained myself to dwell on those dreams, to consciously envision the
adventures to come, the joys that awaited me, so that I could push the pain and fear and negativity
out of my mind. Like the 26 miles I'd conquered by taking it one mile at a time, I realized I could take
it one chemo at at time, one shot at a time, one headache at a time, one day at a time. when I
started putting this into practice-who'd have believed it"-it worked!"    

From thread http://forum.tnbcfoundation.org/the-ten-commandments-of-breast-cancer_topic9334.html the link to:
   http://secondbasedispatch.com/2011/09/21/the-10-commandments-of-breast-cancer/
This was viewed many times when first posted.......thanks for posting, trip2.
You may or may not agree with everything in the link........but you may some things helpful.

Please add to this thread other things that help/helped support you.
Newly diagnosed, please let us know how we can support you
        and let us know when some extra support would be helpful.    
        You are always welcome to post a new thread for support for yourself.
        As noted many times on the forums, the forums are here to help you in the way that is most
              helpful for you.   For some, reading without posting is helpful. For others, reading and
              posting are helpful.

With caring and supportive thoughts,
Grateful for today............Judy

Edited by Grateful for today - Aug 29 2012 at 12:26am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2012 at 12:15am
Informational:       For members currently in treatment for TNBC:

Cancercare will have an ONLINE support group beginning Oct 1, 2012

Description
This 15 week online support group is for women diagnosed with triple negative breast cancer who are
CURRENTLY receiving treatment. In this group led by an oncology social worker, patients give support to each other and share resources and information.
To join this group, you will need to complete our online registration process. After joining this password-protected group, you can read and post messages 24 hours a day, 7 days a week.

Start Date: Monday, October 1, 2012    (Group accepts new members after start date.)

End Date: Tuesday, January 15, 2013

For more information or to registrar, go to link:
http://www.cancercare.org/support_groups/42-triple_negative_breast_cancer_patient_support_group
For more information, one may also call: 1-877-880-TNBC (8622) or 1-800-813-4673.

I saw this on the Cancercare website. Do not have any other info on this.
Have not participated in a Cancercare ONLINE support group.
If any member has participated in a Cancercare ONLINE support group and would like to share
their thoughts, please do.
If any member decides to participate in this and would like to share any feedback when group ends ,
please do so.      


Grateful for today.............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2012 at 10:50pm
Hi Everyone,

As most posters have said, this was not a forum I wanted to join, but I want to learn all I can so that I can make informed decisions.

On June 27, 2012, I was officially 70. Lots of celebration and fun with family and friends. The next day I was informed that I had breast cancer. I couldn't believe what I was hearing. The pre-op schedule was verbally announced by the receptionist. I was trying to write everything down as quickly as I could, but couldn't focus at all. The one date that I did manage to write down was the date of the lumpectomy (July 17).

When I had the stitches out, the pathology report had not yet arrived. The wait seemed to take forever. The surgeon referred me to an Oncologist; the discussion of the report would be done with him on August 30.

The Dx was Stage 3 invasive cancer with triple negatives. Not good. I already suffered from Fibromyalgia, Chronic Fatigue, Spinal Stenosis and Peripheral Neuropathy so this was not a welcome addition. What to do??? I was lost.

At that point, my decision was to do nothing other than keep my immune system strong with acupuncture. After reading much more, I wondered whether a better plan would be to remove both breasts and perhaps 6 months to a year later have re-constructive surgery on both.

I need help, please.Confused
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2012 at 10:57pm
Hi Aftergo,

You have the same birthday as my mother.  I'm so sorry about your diagnosis.  You said you are Stage 3.  Did you have node involvement?  Can you get another opinion about doing chemo?  You may still have time to start treatment if you decide it's the right step for you.

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 Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2012 at 11:06pm
Thanks for responding, Donna ;).Please pass along my belated birthday greetings to your mom.

The sentinel nodes were clear as was every other organ in my body. The oncologist's staging seemed to be based on the size of the tumour (2.5 cm), the dreaded triple negative, and the fact that the cancer was invasive.

I've spoken to my husband about my idea of a total mastectomy, but he said that the cancer would just pop up somewhere else.

At 70, I'd just like a decent quality of life and chemo doesn't sound appealing.

Thanks so much for your input. I hope you're benefiting from your treatments.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2012 at 11:55pm
Afterglo,

Glad you posted.
Everyone tries to make the best decision for their situation.
Sorry that you have this new diagnosis on top of your prior medical conditions.

Am sorry but I was not clear on whether you have seen the oncologist yet or not.
Whether you have already seen the oncologist or will be seeing the oncologist, I hope
you receive the information........all the pros and cons of each option.......so that you can
feel comfortable on what you do.
As you have seen on these forums, many members with TNBC get a second opinion.
A second opinion may help you sort out all your options.
Since I do not know how the Canadian health care system works, I took the liberty (hope that
was OK) to ask the forum members from Canada on a new thread about how to get a second
opinion IF you decide to get one.......and other helpful info about the Canadian system and TNBC. http://forum.tnbcfoundation.org/topic10264_post105837.html#105837    

You are so right about the importance of quality of life.
At the same time, I just hope you can get the information that you need for your particular situation.

With caring thoughts,
Grateful for today................Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2012 at 1:16am
Afterglo,
 
with no node involvement and only 2.5 cm I think your staging may be off. Only a stage 2.
 
Fortunately TN doesnt always pop up somewhere again as you can see by my signature. Good luck with all your decisions. I know they are not easy.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Boo Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2012 at 9:02am
Afterglo, I am here in London Ontario and have been diagnosed for over two years.  Where are you located in Ontario?  I will try to send you a private message with my phone number.  There are two other gals online from Canada.  One in Toronto and one on the east coast.  If you would rather just post here, that is fine too.  Sunnybrook Hospital in Toronto has the only Triple negative specialist that I know of here at the moment in Ontario.  Steve often mentions her.  She has been out of country but is back now.  I will look up her name again.  If Toronto is close, she would be a good source for a second opinion as to what now.  Mostly I send to you do not panic.  It is one step at a time and you are in a good spot right now.  With caring thoughts,

Anne


dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2012 at 3:28pm
Thank you to all who posted on my situation. Never in a million years did I expect breast cancer, but here it is to add to my bag of illnesses.

We are about an hour and a half from Sunnybrook in  Toronto. I know it very well as my husband was treated there for prostate cancer. I went with him from app't #1 acting as moral support provider and stenographer. Currently, he is fine, but will have a 6 month checkup in October.

I guess it's my turn now for b/c even though I vowed that I'd never again enter a medical facility after the spinal stenosis Dx. I have seen too many doctors and tried so many treatments - mostly to no avail.

When I found out that I had a lump in my breast, I was willing to let it stay there; however, family members shamed me into going for at least a core biopsy so that we'd all know what the verdict was this time. All four cores showed malignancy and the family once again insisted that I get 'that thing' removed. Persistent little devils, they are.

Surgery took place on July 17 and my first visit to the Oncologist was scheduled for August 30. I had a copy of the pathology report as did Dr. Reingold who focused on the 'triple negative' result and the size of the tumour. At that time, I told him that due to my age (70) and my other illnesses, I didn't want to proceed any further.. I also told him that if I changed my mind, I'd let him know. Done. Finished. Through...or so I thought until I got a phone call from someone from Southlake Regional last Friday who informed me that she had the schedule for my radiation!!?? I told her that I had told Dr. Reingold of my decision NOT to proceed with any treatment. 

Yesterday I received a phone message telling me to report for radiation starting today at 2:30. What's the matter with them. Would you trust your health and wellbeing to them.
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Hi Afterglo! 
I am from Nova Scotia and welcome you with open arms! Sorry you have to be here for TN but glad you found us! Welcome to our foundation! The support here is amazing and honest...~
 
I too am TN twice, with two primary diagnoses. I was diagnosed in 2009 Left breast; went through chemo, radiation, etc. the whole year was taken up with treatments.  I ended up with infection in the quadectomy and had to be packed for over 5 months before it would heal.  Got through that, thanks be and back to work part time for six months; then diagnosed again in the right breast with TN...." I was shocked and so were the medical staff/surgeons"!  I opted for bilateral mastectomy in June 14, 2011 and no other treatment.  I have not looked back since.  I am back to work full time.  Tiring but still there seven months, so go with your heart my dear! We know our bodies and we must begin to listen to it.
 
Dr. Carey was at Sunnybrook but has taken a sabbactical.  She has left another physician who was shadowing her so would be well versed in TN too!  I would opt for an appointment with him to get some feedback.  I am glad you had your surgery, but I really think the chemo & radiation is the way to go for the first batch to boost our cells both negative and positive out. 
 
I don' t regret having the treatment first time around but to do a second, no way I could not... I opted for quality of life, not quantity! Every choice is our own and must be what we want to do, not what others tell us to do, so listen to yourself and make up your own mind.  I would get the second opinion while you are still freshly out of surgery and if you don't want the chemo, take the radiation.  This will give you a bit of a  boost to kill what residual cells are there, if any. 
 
All the best to you and your hubby.  Hugs, Helen in NS.
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2012 at 7:31pm
Hi Helen, I'm so happy to meet you, but not necessarily here.

It seems that every day I change my mind about what to do. Today, I thought that a total mastectomy would be my answer. No chemo; no radiation- just a couple of prostheses! At this age, vanity is not an issue. Speaking just for myself, quality of life is #1. My family has indicated that whatever I choose, it is my choice to make. If I were currently generally healthy, I might commit to more treatment, but this latest Dx  is just one of many ailments. I feel as if I'm a wrinkled bag of illnesses.

I've achieved my goals, watched our kids achieve theirs and just had one heck of a good time before this. I'm so limited as to what I'm up for, it's ridiculous. Even worse than a cancer Dx is the problem of balance. I've had two hip replacements and after the second, there was a definite decline. Apparently, my brain can no longer communicate with my feet - either Ataxia or Spinal Stenosis. I didn't reach the point where I knew which it is (not that it really matters) until I had the cancer diagnosis and lumpectomy.

Thanks so much for posting!

Isabel


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Oh Isabel,
 
So glad we connected! I can see your health has been difficult for you up to now and this is just one more thing to deal with.  I get the balance thing! It doesn't get better especially when one is tired, but we do manage to live with all the idiosyncrasies we manage to collect over the years....
 
I too have Fibromyalgia and it is somewhat controlled with amytryptaline at bedtime ~ Vertigo has become my best friend over the past three years and take Serc for that! I opted for no reconstructive surgery because I had such a hard time the first time around, so it really is up to us what we decide to do and I am so glad your family is on side with you too!  Mine has been a powerhouse of support.  My daughter is my hero! She did not leave me for a moment in all ways and things.  My son is in the US Tennessee so it was more difficult for him, but they sent cards, letters & tokens of support, ran races and just were there for me...
 
WE are so blessed in so many ways and to have lived the life we have and seen our children achieve their dreams and the grandchildren, we really know there is a God and He has us in the palm of His hand all the way no matter what the situation is. 
 
Thanks so much for sharing and no matter what you decide, I am here for you!  Take care and I am sending hugs from the East Coast! hugs, helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2012 at 9:39pm
Hello Anne and Isabel
Apologies for chiming in late
I live in Pickering just east of the Toronto boarder
Have enjoyed sharing posts with other Canadians on this site- Helen, Mainy, Annie and others. Have also met up with a group of TNBC women a few times in Mississauga, just west of Toronto.
I  do not post as as often as I used to but I appreciate the support and information everyone provides.
I am seeing my onc next month at Princess Margaret Hospital for my 2 1/2 year post BC diagnosis - I worry less than I did in 2010 but it is always "there". Sleeping still a major problem for me

Tracy
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2012 at 9:50pm
Opps,, I included Mainy in my list of fellow Canadians - she is in the U.S - Washington I believe, though happy to consider her an honourary Canadian!!Smile

Tracy 
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2012 at 10:44pm
Hi Tracy! By looking at your signature, I see that you have had a long history with cancer - not pleasant at all.

Is there a page where the medical codes are explained?

I finally made up my mind about which way to go regarding cancer treatment - nowhere. I want to enjoy my time here and check in with my oncologist every 6 months (maybe).

I know that I will undoubtedly be in for some tough times ahead, but I've decided not to fight it. I have read countless obituaries about someone dying "after a long and courageous battle with cancer" and if that is appropriate for them and their family, it's okay with me, but I've advised my family that if my death is to be from cancer, please do not use that wording.

I've had so many chronic ailments that I've been controlling for over 25 years, that there's no fight left in me for this. I know it  sounds as if I'm seeking sympathy, but that's not the case at all. I'm just plain tired.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2012 at 11:53pm
Afterglo,

We each must choose our own path for what's best for us.  Wishing you peace of mind and happiness in whatever path you choose.

Judy started a thread with abbreviations used on this forum.  It's pretty comprehensive and you might want to read through it.

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 Afterglo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 5:53pm
Hi Donna,

Thanks so much for the link. I've printed it and will keep it close to my computer.

Thanks to Judy as well for creating the linkSmile
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