New Posts New Posts RSS Feed - Newly Diagnosed Support
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Newly Diagnosed Support

 Post Reply Post Reply Page  <1 1112131415 16>
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
dkmoore2 View Drop Down
Newbie
Newbie


Joined: Feb 23 2013
Location: Cleveland, OH
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote dkmoore2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 4:27pm
Thank you for your response.  I do have support from my husband, we changed my diet etc. in preparation. I am having a lumpectomy on Friday and checking lymph nodes.  It sounds from what I am reading that I will most likely have to do chemo etc.  I also watched some of the Robin Roberts last night - I couldnt watch it all.  I will write back often.  Very glad I found you all.
Back to Top
beck View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 30 2012
Location: ILLINOIS
Status: Offline
Points: 276
Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 4:46pm
i also had lumpectomy for the tn the er postive i had , i had 10 nodes affected but nothing in breast its called primary unknown, i guess they have a name for everything , i didnt have any nodes affected with the tn, but because it was tn i did the chemo again best of luck and we will be here to suport you Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
Back to Top
denise07 View Drop Down
Senior Member
Senior Member


Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 997
Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 11:56pm
Kaye,
so very happy your treatment plan is in place that sure does take off alot of pressure. Good luck on monday i will be thinking of you and yes i am doing the happy dance to for you!!Please let us know how it all goes on monday. Good Luck...
Denise 
DX Idc 10/07,st2,gr3,2/6 lymphnodes
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2013 at 12:33am
Thank you so much, Denise.  I'll post an update.  I appreciate so much your support!   Kaye
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2013 at 7:52pm
Hi Everyone!
Just wanted to post an update to my situation and let all of you who have so kindly taken the time to  help me know what's happening.
Yesterday, I met with an oncologist who is "the one".  I liked him so much and he agreed with my TNBC expert doctor at UAB about my treatment and he  has the utmost respect for her.  
I start chemo next Tuesday, March 5.  It will be TC for 6 rounds.  He wants me to have 4 rounds and if possible the 2 extra.  He said that it is what MDA guidelines now suggest in my case.  If I get thru 4 and do not want to do 2 more, we'll talk about it and that'll be it.  He's going to see how I do after this first treatment before he schedules the Neulasta shot.  Has anyone gotten by without having to take the Neulasta shot?
I will have to travel about 1 and half hours one way to take treatment and he said I cannot do this by myself because he will be giving me  something that probably will leave me drowsy.  I am fortunate in that I have friends who are willing to take me.
Charlene, I remember you said you drove yourself to chemo treatments.  How far did you have to drive and were you at all drowsy?  I would like to not have to impose on friends if at all possible.
I'm now trying to plan what I might need at home after chemo.

Thanks to all you ladies who have helped me and kept me in your prayers.

Kaye

Oh, for those interested, he said that optimally you would like to start chemo 5-6 wks. after surgery, but the time period varies as they want you completely healed before beginning.  He said that you have up until 3 months after surgery to begin chemo and that you have up to a year after surgery to begin radiation.  
Back to Top
Charlene View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 14 2010
Location: Atlanta, GA
Status: Offline
Points: 613
Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2013 at 9:38pm
Hi, Kaye,
I'm so glad to hear that you have chosen your treatment plan and are ready to go.  I do think it's important to have confidence in your doctor.  I only had to drive about 25 minutes to my doctor's office to have chemo.  I felt fine afterwards.  In fact, the first treatment my husband dropped me off and after I called him to come get me, I started walking home before he arrived.  I was not drowsy at all, but perhaps you will be given a medication that I wasn't.  Maybe you should have someone take you the first time until you know how you are going to feel. I did have the Neulasta shot the next day after each chemo and I never had any delay in treatment due to any blood issues. 
 
I did not start to feel sick until day 3 and then it only lasted through day 7.  By day 8, I felt pretty normal.  I took the anti-nausea meds they gave me as soon as I got home.  I also learned to take Miralax and/or Senekot right after getting home, because constipation is a common side effect and that was not pleasant.  Drink lots of water the day before treatment, the day of treatment, and the day after, as well.  I took it very easy on the days I didn't feel well, mostly lying on the couch and reading a good book.  I ate bland food most of the first week, but after that ate whatever I felt like.  As you can see from my signature, I only did 4 cycles--my doctor said there was no difference in survival rates, but maybe there has been new research since then.  I am approaching my 3 year anniversary and I am very thankful.  Chemo is not fun, but it is very manageable.  I wish you the best.  Please post if there are any other questions I can help with.
 
I had also understood that the window was 3 months from surgery to chemo, if necessary.
Charlene


Edited by Charlene - Feb 26 2013 at 9:40pm
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 8:52am
Hello Kaye,
Charlene has given you some great advice about driving and such.  Some people have lots of benedryl during infusion and don't need to be driving.  Other have less, or no benedryl.  Makes a big difference. 
 
I had infusions bi-weekly and never felt competent to drive myself to or from treatment.  Just be safe my dear and don't take any unnecessary risks.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
Back to Top
MarshaR View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 24 2013
Location: United States
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote MarshaR Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 11:35am
Kaye,

I 've done 11 rounds of taxol and one A/C. I can hardly walk after a treatment, let alone drive. I do take benedryl as a pre-med and get a neulasta shot after. I can tell when the pre-meds hit me. I go from neverous chatter with the nurses to almost drunk like speech. I walk up the stairs to treatment and ride the elevator down and somewhat stumble as I walk. But like Lillie said, everyone reacts differently. Err on the side of caution. No reason to put yourself or others at risk driving when you shouldn't be. And there is always the chance that additional medications may be necessary that may impair your ability to drive.

May you be granted peace,
Marsha
Back to Top
Rome View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2013
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rome Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 12:23pm
I have just been diagnosed and am waiting to see my oncologist to get chemo closer to home. I am in stage or grade III. They are planning to do CMF chemo and then radiation, with neulasta on the second day. It's all a bit scary so I am glad ther is a board out there to help me through the ordeal. I am in my 70's.

Any advice you may have is very welcome.
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 473
Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 1:28pm
I am so sorry Rome. I would also like to welcome you to this special site.
 It is chock full of not only information, support, resources and a whole bunch of people that are going through, been there. You can come to this place to cry, laugh & scream as we all have.

Did you have your vitamin D levels checked by chance? There are some compelling evidence that it is related to breast cancer. Did you by chance have genetic BRCA gene testing done?
Many people have had Chemo before surgery to see if the tumor (s) respond to Chemo, and if they don't then the doctors can change out Chemo. Radiation has been had by many also.

Do you have people around you to support you through this?  Accept any help anyone gives you. There is a ton of information to take in, digest it in small quantities because it can be very over whelming. As hard as it may be, please stay away from Google, it is a very scarey place.

Welcome again & please come back and post your updates.

Sieze the Day,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
Rome View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2013
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rome Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 2:22pm
Thanks, Natalie. I have not had my vitamin D checked...I take 1000 mg daily. My original diagnosis was invasive loublar cancer. It was only after the lumpectomy the told me it was TNBC and I am going to have chemo and radiation. You are right, Google is terrifying! I am trying to remain positive and put my trust in God.
Back to Top
Charlene View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 14 2010
Location: Atlanta, GA
Status: Offline
Points: 613
Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 2:58pm
Hi, Rome,
You are in the scariest part of the journey right now and things will get better as you begin and complete treatment.  I also had invasive lobular and I've been told it has a little better prognosis, so grab onto whatever good news there is!  I believe CMF chemo is one of the older regimens--how many cycles are they recommending?  Did you have any node involvement?  Keep in touch with any questions; wishing you the best.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 473
Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 3:01pm
Stay positive, it can be rough but it is doable Rome. I had Lumpectomy, chemo then double Mastectomy with reconstruction. I chose not to do radiation, but a lot do. Just be very careful about the internet, truly limit yourself. I only looked up things like side effects to certain meds or supplement & diet stuff. I had the dickens scared out of me when diagnosed, of course I did what I am telling everyone that will listen NOT to do.

I know it is really tough, but try to relax & do something you really enjoy to keep your mind busy.

Seize the Day,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
Rome View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2013
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rome Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 5:56pm
Hi Charlene, thank you for your response. I have to have chemo every two weeks for 16 weeks, followed by neulasta. I think the radiation is after the chemo, but will know more when I see the oncologist next week. Your responses make me feel I am not alone.
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 9:17pm
Thanks so much Charlene, Lillie and Marsha.  I will be careful.  My really close friend doesn't seem to mind driving me at all and I have others who have offered and if I have to I could stay right there where I'm getting the chemo.  The cancer clinic is connected to the hospital and the hospital has a doctors' building connected to it and in that building they have rooms set aside for patients or family members of patients that can be reserved just like a motel and I don't think the room rates are that high.   I like having that bit of insurance of having a place to stay if I had to.

Thanks for the tips, Charlene!

Rome, this is a great site that you have found.  It's full of wonderful people and great info.  You have come to the right place.  I wish you the very best.  I'm just a little bit ahead of you I guess.  I start chemo on this Tues., March 5th and my surgery was on Jan. 10th.....one step at a time.

Back to Top
beck View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 30 2012
Location: ILLINOIS
Status: Offline
Points: 276
Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2013 at 5:34pm
hi i saw where one of you mentioned cmf chemo, i just finished that in june of last year , if you have any questions about it feel free to ask me , i am 63, i think they give it to us older gals more   Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2013 at 9:36pm
arabella,

Sending you caring and positive thoughts for your 1st TC chemo tomorrow Tuesday 3/5/13.

Lee posted some great info on chemo on
http://forum.tnbcfoundation.org/did-anyone-get-by-without-neulasta-shot_topic10961_page2.html
Will quote it here to share with other newly diagnosed.
Newly diagnosed remember: Follow your oncologists plan......and/or ask questions.....if anything that
follows is different than your oncologist's plan.

Originally posted by Lee21 Lee21 wrote:

Kaye, Good luck w/ chemo tomorrow.
Be sure to drink plenty of fluids today and tomorrow (I was told to drink about 2 liters of fluid) so that the IV will slide right in and the excess chemo will get eliminated (Cytoxan can also cause cystitis).  If your onc is giving you Benadryl, it will make you quite drowsy. I also asked for Ativan to take the edge off (makes me drowsy in addition).  I bring reading material (on iPAD), ear buds to plug into iPAD to listen to music, Gatorade/water as well as a variety of foods (trail mix, fruits, crackers). Those hours at chemo can be quite long.  I'm not sure if Taxotere causes neuropathy as frequently as Taxol - when I was on Taxol initially and Cisplatin later, I took Vit B6 100 mg (from Walgreens) twice a day, acetyl L-carnitine 500 mg (from Whole Foods) twice a day and glutamine 5 gm (powder from Vitamin Shoppe) three times a day.  I don't know if it helped or not - I developed low grade neuropathy in fingers and toes.  I also took Miralax starting the day before chemo and through the week.  Constipation is caused by the anti-emetics they give you.  You might need to figure out what is optimal by trial and error.  Also the Decadron (dexamethasone) they give you to take gave me insomnia for a week.  Very importantly, I brushed my teeth and rinsed my mouth with baking soda/salt mouth wash after each meal. Oral hygiene is key to minimizing discomfort during chemo.
I'm sure your care team has told you all of these things; there are other things I am forgetting.
..... I took Prilosec (a proton pump inhibitor) starting the day before through 1 week-10 days after each cycle. Prilosec minimizes heart burn. Over the counter Prilosec is much more expensive than the generic form that your doc can prescribe.



I have posted some info on chemo on other threads.   
Since I am not editing what I posted previously,
there will be some repeats of what Lee said.

Before chemo if possible:
     Flu shot ( according to season and per one's oncologist)
     Dental checkup and cleaning.

Chemo priorities:
-   All chemo side effects are possibilities not probabilities.
           Yes, there are side effects.   But there is great variation.....and until one has had the 1st chemo
                    one may as well hope for the best.
            It is reasonable to expect some fatigue.
-   Hydration, hydration, hydration
-   Reasonable activity.     Again, large variation.
               Some woman walk for half an hour each day.
                   Some women walk from the bedroom to the kitchen.
               This is not the time to "push" oneself. Try to walk a little (or as tolerated) each day.
               Listen to your body.....even if somedays, one does spend most of the day in bed.
- After chemo with all the anti-nausea meds, figure out what will keep bowels regular.
               Prunes, bran cereal, colace etc.   Check with your onc re: meds including over the counter.
               Many find the fiber cereal cereal and colace helpful the first few days after chemo.
                  Be sure not to overdo constipation prevention!!! Again, one will have a better idea of what
                  one needs after the first chemo.
- Take all the PRN meds (meds ordered PRN-as needed) at the first sign of a symptom....until one
               knows how one responds to chemo.
- If one has Neulasta, confirm with MD one can take over the counter Clariten with Neulasta.
             Some get bone pain with Neulasta and the Clariten helps.   The Neulasta injection is usually
             given the day after chemo when there is concern for low white blood cell counts due to the chemo
             protocol one is one. The dose dense protocols and TAC chemo protocols usually include
             Neulasta (one injection) or Neupogen (injection given over several days). Discuss with your
             oncologist re: YOUR plan.

I am sure you have good info on chemo from your cancer center. There has been good info
posted on your various forum threads.
If you have enough info, disregard the following.
Otherwise, pick and choose if anything would be helpful to you.
Thought one book from the public library had a lot of good info.
"Chemotherapy Survival Guide"   (Library call number: 616.99MCKay
by Judith McKay, Tamera Schafer    (2009)    
(Am sure there are other books.....and better books.....it's been a year but wrote the
title and author of this book down as , at the least, it was a good general overview and
what I thought very good info......(always confirming anything in the book with my MD
when needed)
Remember: all side effects are possibilities and not probabilities.
   Note: People do get side effects......but until you know how chemo will effect you,
                 the side effects are possibilities. Few people (if any) do not have some degree
                 of fatigue. Hair loss with chemos resulting in hair loss. Otherwise, it is so true
                 every one responds differently.
Nutrition: see an oncology nutritionist (if possible). Protein important for cell repair.
                   Hydration important.
Exercise: Any exercise is better than no exercise.
                 People will vary on what they can do during chemo.
The post on the TNBC resource/news/tips forum "Chemo Tips"
http://forum.tnbcfoundation.org/the-chemo-tips_topic3101.html
    Many good ideas here. As usual, check with you MD re: any supplements suggested.
    Would also recommend checking with your MD on 2 of the things mentioned in chemo tips
       (as believe there is a difference of MD opinions on some of the things mentioned)
    Check with your MD especially on: Colonics. Use of ice on nails.
For dry mouth: artificial saliva.   Biotene Oral Balance (gel)       saline water mouth rinses/gargle.
                            Biotene toothpaste.    
Really important to take anti-nausea meds as directed. Take PRN anti-nausea meds at first sign of
    any queasy feeling (at least until you learn how you respond to chemo).
Check with provider about what to use for any heartburn like symptoms.
If you plan on getting a wig, get before you start to loose hair.
Prior to taxol: check with your MD about starting Vit B 6 100mg daily one week prior to taxol start.
    Was told to continue for 6-12 months after last taxol dose. Some feel Vit B 6 decreases or prevents
    possible taxol side effect of peripheral neuropathy.
Make plans to have help "available" for most of 1st week after chemo.......then you will start to know what
     help you may need.   You may not need any help. You may need help on chemo day and for 2 days
     after. You may need help only on day 4 etc.   As usual every, one is different.   By having help
     available to call if needed the 1st week, it may help make the week easier. If you have children,
     it would be great if you could arrange help on a couple of days regardless of how you feel....
     just to be sure you can get some extra rest during chemo.
Hopefully, a caring and calming person can accompany and stay with you while you get chemo.
Might consider some "Good Luck" object to bring with you to chemo. Or some people have a chemo
      hat/cap or T-shirt.
Think of some positive affirmations or sayings for actual chemo infusion.
       Reportedly, it is better to say/think positive statement....no negatives or negative connotation words.
       Ex: better: I am healthy. All my cells are healthy. I will have a long healthy life and see my children
                            grow up and see my grandchildren.   My treatment plan is healing me.
              not:      I have "no cancer".     etc.
              Am sure many people have said: I have no cancer and have been healed. Again, reportedly,
                  it's better to say positive statements.
       Some people are not into positive affirmations......and that's OK.
       Disregard this info on positive affirmations if it does not seem right to you.
Give some thought of how you want to spend the chemo time:......if a busy woman/mom: sleep!......
      maybe a magazine or book.....maybe some handiwork if you knit or sew.....or write letters........
      if you bring music to listen to, you may want to not bring your favorite songs (just in case
      chemo   memories attach to favorite songs)........or other.    
      Can try different things during chemo time.
Take time to use the bathroom (have an empty bladder without chemo in it ) when you leave to go home
Hopefully, since your anti-nausea meds will be working, you will not need foods/drinks that you know
       help when you have a queasy stomach.   You might want to have such items in the house......and
       then you can use when next family member has a queasy stomach (not you!).
Some of the things mentioned here are also on the chemo tips post.
It has been suggested that when good friends/relatives asks: What can I do to help?......Have some
specific things that would be helpful for you.   Bring a meal over the night of chemo days. Help out with
rides for the children for their activities/school etc.   Think one of the best ideas I have heard: delegate
one of your best friends/relatives to be "your volunteer coordinator". Then, every time some one says:
How can I help? You can say: I'll give your name and phone/e-mail to my volunteer coordinator. That
way you let that one person know what you need and that one person sets up the help ( or some system
                    like this that would work for you and your family).
Another thought: BE READY when people ask what they can do to help.
             Suggest a meal on chemo nites.
             Suggest a call when they are going grocery shopping....and they can pick up essentials for
                      you.
             Ask if you may call them if you need a ride.
             It is really good to have some one go with you for your chemo sessions.
                   Choice wisely. When an appropriate person to accompany you to chemo asks what they
                        can do, suggest go with you to chemo.
             The things that would be helpful for you.
             Once you have done the above, you may not need any help........but it's easier to decline
                   or stop help......then to start it up mid treatment.   Also, try not to decline help too early....
                   as some fatigue can be cumulative.   Yes, one could do a lot one self.   With help, one has
                   more energy for healing!
I liked to be by a window......so I always asked for a chemo chair by the window......
               lucked out.....got a window seat every time!

Once you have your first chemo, you can figure out what works best for you for the most healing
experience. You have read it many times.......and it is so true.......once, one has the 1st chemo behind,
one does feel better on one level as one knows what to expect.

These are just some thoughts. Pick and choose what feels right for you. You know your needs best.


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


When one have the time to watch, one may find the video on chemotherapy by the Fox Chase Cancer
Center helpful: http://forum.tnbcfoundation.org/chemo-info-video-fox-chase-center_topic10276.html

Edited by Grateful for today - Mar 04 2013 at 10:19pm
Back to Top
alyca View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 05 2013
Location: Seattle
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote alyca Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2013 at 12:59pm
My name is Alyca...I am 35 and was JUST diagnosed yesterday with TNBC.
 
I have questions about my pathology report.....
 
My Nottingham grade was 9, which sort of sounds like the end of the world, to me.  Please tell me it is not...  It also says the histologic grade is high grade, which is also not good.
 
The ultrasound last week showed 1.6cm at the largest, but I apparantly have dense breasts because I am young, so the mammogram was not useful and they are waiting for me to mensturate so they can schedule an MRI to further evaluate. I am told that surgery will happen a few days after the MRI.  I am very early in the game at the moment.
 
I am seeing Dr Patricia Dawson at the True Family Women't Cancer center through Swedish Hospital in Seattle.  Anyone have experience with this clinic??
 
My pathology report DOES say that lymph-vascular space invasion was not identified, so that is good...
 
They are saying I am currently stage 1, but they are really basing that on nothing, since they don't have a clear picture of what is going on, other than the biopsy information.
 
I am freaked out.  This sounds like especially terrible cancer, and I am really not prepared for that.  Regular old cancer, sure....but this hard to treat stuff?? Not so good.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2013 at 1:20pm
I'm sorry you received this diagnosis, but you've come to a great place for information and support.  I believe several of our members are from the Seattle area and hopefully they'll post soon.  My husband's aunt and uncle live in Seattle and they went to Swedish when he was dx with esophogeal cancer.  They spoke very highly of Swedish.

Most of the time TNBC is Grade 3, which is 8 or 9 on the Nottingham scale.  It just means it's more aggressive.


http://www.oncolink.org/experts/article1.cfm?id=2221#.UTY0azfx86Q

The Nottingham histologic score is simply a scoring system to assess the "grade" of breast cancers.

It is a total score based on 3 different sub-scores. The 3 sub-scores are assigned based on 3 components of how the breast cancer cells look under a microscope. (The details of these 3 components are not critical for you to understand). Each of the 3 components is assigned a sub-score of 1, 2, or 3, with 1 being best and 3 being worst. Once the 3 sub-scores are added, a Nottingham score is obtained: the minimum score possible is 3 (1+1+1) and the maximum possible is 9 (3+3+3).

A histologic grade of III is assigned to any patient with a Nottingham score of 8 or 9. Grade I refers to Nottingham scores of 3, 4, and 5, while Grade II refers to Nottingham scores of 6 and 7.

In the end, the Nottingham score and histologic grades are not very useful in the big picture, as they do not alter final overall treatment recommendations. High-score cancers tend to relapse more often than low-score cancers. Ultimately, however, we don't use the score in making clinical decisions.


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

Back to Top
AllisonW35 View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 04 2013
Location: Murray, KY
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2013 at 3:38pm
N

Edited by AllisonW35 - Mar 05 2013 at 4:57pm
Back to Top
 Post Reply Post Reply Page  <1 1112131415 16>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.