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Old 09-21-2011, 06:11 AM   #1
NEDenise
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Unhappy I Need a Pep Talk...Very Discouraged Today

Sisters,
I need a pep talk, from people who understand what I’m living.
I am usually upbeat and positive about my fight with BC.
But, today…not so much…

My chemo is over, except for Herceptin. I’m scheduled for a bilat. mast. with DIEP flap recon. On Oct. 7.

My onc told me months ago that she believed I’d be cured. Yesterday, when pressed, she clarified what she meant. She said something to the effect of, “the 5 year survival rate for women with your kind of cancer is very good, you only have about a 50/50 chance of recurrence.”

I was stunned. I’m walking through the fires of hell, with Taxotere, Neulasta, Adriamycin…multiple surgeries, and the fun of radiation still on the horizon…with a smile on my face, and a can-do attitude…and now you’re telling me in a perky, optimistic voice that I have a “very good chance of living 5 years?” I have sons who are 12 and 14. That doesn’t even get them out of high school. College? Weddings? What about those grandchildren I’ve been dreaming about!! I was crushed. I’m crying now, just remembering it.

And my poor husband. We’ve been together since we were 16 years old (that’s 30 years). I’ll never, ever forget the look on his face as we drove home yesterday. After six months of being strong and brave…he’s scared to death now.

I see on this site that some of you are several years out, still living a good life with stage IV disease, and I’m so inspired. But, I’m feeling betrayed that I was led to believe that they could “cure” me, only to find out that, cure doesn’t mean what I thought it meant.

Are there any stage 3 ladies out there who have finished treatment and are “cured”…by it’s normal definition, not the wacked out oncological statistics definition.

I want to be like TriciaK…21 years since diagnosis, and still living a good life.

Sorry to go on so long with my self pity…I told you…today is the least optimistic I’ve felt since being diagnosed. Thanks for listening. God bless all of you.
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-21-2011, 06:39 AM   #2
Jackie07
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Re: I Need a Pep Talk...Very Discouraged Today

Denise,

I can understand the shock that's still in you. Your doctor had poured 'cold water' on you.

But hey! Everyone on this earth has a 50-50 chance of either staying alive or being dead. I had had a recurrence even though the chance of my haveing a recurrence was only 8%. (92% 5 year recurrence free survival with chemo and radiation - 2003 statistics.)

I was very shocked and thought my time on this earth was limited. (Although it is true for everyone - with or without cancer .) But better treatment options (Herceptin was approved by 2007) actually help knock out the cancer - I've been in remission for 4 years now.

You've just finished a big race. You were feeling so relieved and exhausted at the same time. Suddenly your coach mentioned to you that the race is not over, that you need to walk slowly around the track and be alert on another call to the race. Yes, you felt betrayed and you wanted just to sit down and have a good cry.

The reality is, you have the 50/50 chance not having any sign of breast cancer again. So, do go out and celebrate the moment! You've earned it!

http://her2support.org/vbulletin/sho...568#post257568
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
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3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
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10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
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Last edited by Jackie07; 09-21-2011 at 07:00 AM..
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Old 09-21-2011, 06:43 AM   #3
norkdo
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Re: I Need a Pep Talk...Very Discouraged Today

Dear Denise,
Please don't despair. I have learned on this site a big wonderful piece of news: that if I do have a recurrence, there is still a strong, strong chance that it will not be the end of me. So many women here, on their biographical details in their signature lines have encouraged me. So many are ten years since diagnosis alive and NED, while having had a couple of recurrences in those ten years.
I am praying for you and me. We are in this together. I hope we meet.
Love and prayers,
Nora
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 09-21-2011, 06:58 AM   #4
snolan
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Re: I Need a Pep Talk...Very Discouraged Today

Denise,
Though I am not a stage 3 I/we can all relate to what you are feeling. Having finished my chemo in December and just finished my herceptin 3 weeks ago, the fear of those statistic are even stronger then before. It is unfortunate that your Dr. changed his discription of your situation. My Dr stated to me that I would always be considered in remission until the day I died from something else then they can consider me cured. This helped me put it in more perspective that I have to come to terms that this could come back. But seeing the others on this site that have been living through reaccurances I don't think it is a death sentence. So plan on seeing your kids through high school and marriages, don't give cancer the the satisfaction of controling your life. Be strong, stay strong.
Suzanne
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 09-21-2011, 07:20 AM   #5
Pray
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Re: I Need a Pep Talk...Very Discouraged Today

Hi Denise,

I also was told after all the tests that I would be cured and a year of treatments I could do easily to live a full life. I have an idea of how your feeling. After three weeks of riding that high I had surgery and the cancer in my lymphnodes did not show on the mris so my stage was changed to stage 3. I will always remember the look on my husbands face when we were told. His face was so red and he hung his head down the rest of the time we were there. You will find your family strength will carry you when you don't feel you can carry yourself.

Since I've been coming to this site it has made such a big difference in my attitude. All the positive support, the wonderful lighthearted advise and "Pep talks are awsome! The wealth of information here is endless! Nora is a wonderful women to chat with and is new here and Laurie7 she has three kids and stage 4 now and is living life to the fullest along with Pam, Bonnie, Jackie and all the rest and as I've read over and over here sometimes you just want to be heard! This is the place! Any one of these women would love to chat with you including myself. Please know that you are in my prayers. I have read your posts you are a wonderful, upbeat, positive, strong women! You are not alone!

God is Good All the Time!

Your Friend,

Nancy
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-21-2011, 07:26 AM   #6
Pray
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Re: I Need a Pep Talk...Very Discouraged Today

Suzanne,

Thank you for the saying "Don't give cancer the satisfaction of controlling your life" Priceless!!!!!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-21-2011, 09:10 AM   #7
bejuce
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Re: I Need a Pep Talk...Very Discouraged Today

Dear Denise,

I can relate to everything you're feeling - I've been there many times. As you can see from my signature, I too am a stage 3 with kids (now 9, 7, and 5). I also have been with my husband for 21 years (11 married) and we share a special bond.

I know it's hard to swallow our diagnosis and to think that cancer one day will return. So I'll focus on the positives: you are getting the best treatment available today for your disease. Statistics are old and do not reflect treatment today. I heard at least 70 % chance of making it to 5 years, and that if I passed year 2, chances would improve dramatically. I also heard from one doctor who told me "your prognosis is actually much better than what your numbers indicate". He used the word cure with me, and told me that he's treated 50 patients in the past few years with HER-2+ cancer, with only 2 recurring. The 2 that recurred had small brain mets that were blasted away with Gamma Knife and are doing fine today.

I go through days in which I think any little new pain is cancer returning. I also have days now in which cancer doesn't really enter my mind so much. Those days are increasing and keeping my life as normal and as busy as possible helps.

Remember that cancer cannot rob us of our love for our families. Cancer cannot rob us from teaching our kids our values, from sharing special moments with them.

Also remember that we're all here for you so you don't ever have to feel alone in your thoughts.

One more thing - when I had my mastectomy, I had no breast cancer cells left in the breast tissue itself, only very sporadic cells in the lymph nodes. Because of the number of nodes that looked to be affected from the outset, I took Xeloda (at a low dose) during radiation. I also enrolled in a vaccine trial which I finished last month. You may consider discussing these and any other options available to you with your medical team. If anything, it may give you some more peace of mind.

Good luck with everything!

Love,

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 09-21-2011, 10:04 AM   #8
Lien
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Re: I Need a Pep Talk...Very Discouraged Today

Hi Denise,

There's no way of knowing what lies in our futures. Since I entered breastcancerland 7,5 years ago, I've seen women recur who had an almost 100% chance of surviving their disease, and I've seen women reaching NED (No Evidence of Disease) status after a Stage 4 diagnosis. So your oncologist is right: you have a good chance. Actually, your odds are probably much better, because of the newer drugs you are taking. In 10 years time, perhaps, we will say: We were the lucky ones; we had Her2 positive disease.

We all know how it feels: we bravely endure what we have to endure to get better, and then suddenly it hits us: we could have died and we could still die. That is the scariest feeling. But believe me, this feeling will subside. We go on with our lives and we will get used to the "new normal". Every day is one more day that we have survived. We go back to bickering and getting upset about the little things. And more and more cancer is shoved into the background. Unless we notice an ache, a cough, a weird symptom. Then for a while it all comes back. Until we find out it is ok. Or it isn't, and then we deal with it.

You have a good chance of never ever having to deal with cancer again. Focus on that, if you can.

Hugs

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 09-21-2011, 10:10 AM   #9
lkc Gumby
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Re: I Need a Pep Talk...Very Discouraged Today

Hi Denise,
I am a stage IIIer out over 6 years and there are quite a few of us out there doing well.
There is a stage III forum on another discussion board that sometimes us "oldsters" visit.
I got the gloom and doom talk too( same sucky stats); Drs go by stats, but truly in reality there are no LONG term stats for us: Her2 positive no distant mets due to the advent of Herceptin. The playing field has changed for us , and there is so much hope now.
You will have sad moments, It's such an emotional time. It's Ok. It will get better!!!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 09-21-2011, 11:36 AM   #10
Joanna J
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Re: I Need a Pep Talk...Very Discouraged Today

So sorry you are feeling discouraged, ,you have finished chemo(thats a great accomplishment).I think its normal to feel like you are feeling,But you got rid of your cancer,when you had surgery.
chemo & Herceptin just adds more insurance,that the cancer won't return,I too worried abt the 5 yr thingy,but look,we are not born with an expiration date,I appreciate life more than ever now,something I think the good Lord wanted me to learn,A lot of the feelings you are having will soon pass you will see,Herceptin was pretty easy for me & I hope this for you also,Keep Fighting,You are Tougher than You Think!!!!
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found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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Old 09-21-2011, 12:40 PM   #11
tricia keegan
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Re: I Need a Pep Talk...Very Discouraged Today

Denise,

The numbers you were given are not written in stone, many people go on and don't recurr so why not you???

Personally I dont look at stats and truely believe the saying we are all individuals and if I do recurr I'll worry about it then!
I'm six years out now and so far so good, it may not last forever but today I'm cancer free and refuse to worry about it
Take one day at a time and simply accept it may happen, but there's gurantee it will!!!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-21-2011, 01:01 PM   #12
chekmark
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Re: I Need a Pep Talk...Very Discouraged Today

Denise, We have all felt the fear that you are feeling right now. I try to look at it this way. There is a 50% chance that I will develop diabetes. There is a 50% chance that I will develop heart disease, there is a 50% chance that I will die in a car accident and the list goes on. I don't think we worry so much about stage but the word of cancer itself. We immediately think that our days are numbered when we hear that we have cancer. We are just so much more conscience of what time we have left cuz we have had a life altering experience. I worry about recurrence all the time but try to tell myself that I will deal with that when it happens IF it happens and our chances that it won't are pretty good. You will see your children graduate and you will be telling your grandchildren this sorry someday. Good luck and stay strong. God Bless. Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 09-21-2011, 02:33 PM   #13
BonnieR
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Re: I Need a Pep Talk...Very Discouraged Today

It was unfortunate that your onc did not choose her words more carefully from the beginning. "Cure" is a mighty big word to be throwing around. I know you and your husband are feeling betrayed. But consider this, 50/50 means the glass is half empty or half full. Why shouldn't you be in the good 50%? Besides, it is all semantics and statistics. We each have our own hopes and dreams and we should go forward with the knowledge that we are fighting our own individual fight with the intention of coming out on top and defying statistics. Keep your eye on the prize. And cherish each day because, really, that is all anyone has anyhow. Most important, keep the faith.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 09-21-2011, 02:58 PM   #14
NEDenise
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Re: I Need a Pep Talk...Very Discouraged Today

Thank you everyone!
I knew I could count on all of you! As Bonnie pointed out...I need to think of my glass as half full. My minister once told me...you're not a glass half empty person, or a glass half full person, you're a my cup's overflowing person!" I need to get my head straight, and get that attitude back in gear!

My levels of faith and joy are starting to rise again. No more pity parties for me! I'll be my old, "cup overflowing" self again in a day or two.

Thanks to all of you for your kind words and for your support. Your empathy is exactly what I needed.

Keep praying! Stay strong!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-21-2011, 03:25 PM   #15
Becky
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Re: I Need a Pep Talk...Very Discouraged Today

Not only do you have to try to remain positive, I think your doctor's stats are wrong. For example, when I had cancer, I was Stage 2A. Herceptin was not available (although you can see by my signature that I did have late Herceptin - alone after chemo and rads were completed because by that time it was available and I fought for it and got it). Prior to that, I asked my onc for stats and he told me 70/30 which seemed high but it was Her2+/no Herceptin days. That said, you may be dealing with old statistics because in general, 2 years out, Herceptin reduces recurrence by 52% with a 6 year overall reduction of 39% (this is as far out as the stats go right now - we are on the cutting edge).

This brings your stats with Herceptin to a 2 year of 76% and a 6 yr to almost 70%.

But stats are nothing - nothing at all. I have a neighbor who was diagnosed Stage 4 ovarian cancer 3 years ago. She had a 17% chance of being here one year out. What that means is of 100 women just like her, only 17 will be here in 1 year. She is still here and doing well. So, even if you only had a 1% chance, why shouldn't that one woman be you. You will be fine and looking out the other side. Its this early side and a year or two following that the demons still haunt you. I promise, every day will be better. It seems like baby steps and suddenly, one day, you realize you didn't think about having had cancer for a whole day or a whole week - at least you won't be thinking about yourself. You may be just here on the board trying like hell to calm someone down who needs you. Trust me, I was a freak when I found out I had cancer and I was a freak in the operating room, chemo room, radiation room and then back to the chemo room. Friday is my 7 year survival date (of surgery although I was diagnosed weeks earlier). We are all here for you 24/7 and are rooting for you everyday.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 14 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-21-2011, 03:25 PM   #16
ElaineM
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Wink Re: I Need a Pep Talk...Very Discouraged Today

We all have ups and downs with cancer. It is normal to be upset from time to time. Hang in there and keep putting one foot in front of the other and keep going no matter what happens.
Take good care of yourself.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 09-21-2011, 03:52 PM   #17
BonnieR
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Re: I Need a Pep Talk...Very Discouraged Today

As Becky points out, we do all have our justifiable "freak out" moments! You are allowed and entitled!
My most recent was when I was mistakenly diagnosed with lung cancer and part of my lung removed, only to find out it was benign. Well, I was hysterical that they could DO this to me! That this mistake happened. I absolutly could not see the silver lining, it was not cancer! My glass was half empty. And when the surgeon said "I thought you would be happier" I wanted to kill him.
Keep the faith.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 09-21-2011, 04:40 PM   #18
sassy
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Re: I Need a Pep Talk...Very Discouraged Today

Denise,

We are very similar in our journey.

I was dx at 45, stage IIIA, my boys were 12 and 14 and my husband and I had been together 19 years.

I am still here going strong! My boys are both in college with steady girlfriends and there is more of both my husband and I to love than there used to be!

Becky is right about the stats; they are more favorable than the 50/50 you were quoted. Those of us dx since 2005 are rewriting the stats because of Herceptin.

As time goes on, your anxiety level will gradually lessen and life will crowd out the worry of cancer. It probably will never go away, but its light will be dimmed by the light of life.

"Do not let tomorrow's worry rob you of today's Joy."

Come in anytime you need encouragement--there is lots of it here.

Life is good--don't forget it.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!
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Old 09-21-2011, 07:41 PM   #19
JillaryJill
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Re: I Need a Pep Talk...Very Discouraged Today

I am a stage IIIc, er-, pr-, her2+++. My onc who is at a major teaching hospital in Chicago, and has been at the forefront of the Herceptin clinical trials since 1999, told me if I handled all of the treatments (which I did) there was less than a 10% chance of recurrance. She sees alot of Her2+++ positive patients because of her reputation treating this breast cancer subtype. I told her to repeat herself, I was so shocked. She said this is a "New Day" and she was seeing stats that favorable. Of course anything can happen in cancerland, but I think the stats you were quoted were quite out of date.

But yes, I sometimes have days where I am scared also. I am told it gets easier as more time passes.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 09-21-2011, 09:56 PM   #20
candlegranny
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Re: I Need a Pep Talk...Very Discouraged Today

i too have stage 3C. My oncologist told me the same thing. He said because of the number of nodes involved.. there is a 50% chance it can come back.. he was shocked when I said 50/50 that is not too bad. It is not 100% and i told him I would be on the 50% side that is good. I know 50/50 is not as good as we would like... but he is not telling us that it WILL get us. I get scared too. when he told me to come back in 6 months instead of 3.. i dont want to wait... but othere days i feel normal again and love it for a second until reality steps back in. My doctor said I dont need clinical trials. he says i got hte standard medicine and it worked. In my opinion the healing of the radiaton burns was the worst experience of the whole treatment thing. I had the same treatment as you NEDenise but 18 out of 31 nodes cancer. i am ready to look for a plastic surgeon ot get my boob back! it is almost 2 yrs and i am ready i think. I only lost one boob and nothing done to replace it yet. that is another journey... opinons and finding the right plastic surgeon for me. keep your chin up there is always positive in everything. Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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