We are 144,781 members in 73 forums discussing 114,597 topics.

Help with Abbreviations

All TopicsForum: Just Diagnosed with a Recurrence or Metastasis → Topic: Oncologist said odds are pretty high....

Topic: Oncologist said odds are pretty high....

Forum: Just Diagnosed with a Recurrence or Metastasis — Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Oct 5, 2012 05:02PM

wrsmith2x wrote:

That anyone who has had a local recurrence has around a 40% chance of getting BC again (www.breast-cancer.ca/survival-...  I try not to get hung up on that number as I understand that I will either get BC again or not.  I am wondering....those of you that have mets....did you have local recurrence also?  And if so, how long after your local recurrence did you get mets?  I must admit that I am afraid.  I am taking anti-depressants and they help but I am still afraid.

If this pertains to you, could you answer the questions without lecturing me on my fear, please? 

Log in to post a reply

Posts 1 - 24 (24 total)

Log in to post a reply

Oct 5, 2012 08:23PM bak94 wrote:

I had a new primary after 8 years. I am scared too, as I am somewhere between a stage 3 and stage 4. My positive node was disputed as to whether it was a mediastinal node or internal mammary node. I guess what I am saying is that I am scared too! I am also taking antidepressants, doesn't help with the fear. And I am in therapy, still scared! It looks like you are on the good side of statistics, almost 5 years before recurrence and node negative. We can do this, well, it is our only choice:( isn't it. It sucks, but it is what life gave us unfortunately. I hope you get more uplifting posts than mine!

Not really sure what stage I am-Some docs say 3C, others say stage 4. I had no auxillary nodes positive but had internal mammary nodes positive and possibly mediastinal node positive. It's just a number anyways, right?

Dx 12/15/2002, IDC, 3cm, Stage IIb, Grade 3, 2/40 nodes, ER-/PR-, HER2-Dx 4/5/2011, IDC, 2cm, Stage IIIc, Grade 3, 0/2 nodes, ER-/PR-, HER2-Surgery 01/02/2003 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 02/05/2003 Adriamycin, TaxolRadiation Therapy 07/08/2003 ExternalChemotherapy 04/27/2011 Adriamycin, CytoxanTargeted Therapy 05/14/2011 AvastinChemotherapy 07/29/2011 AbraxaneSurgery 11/30/2011 Mastectomy (Both)Radiation Therapy 02/11/2012 ExternalHormonal Therapy 04/10/2012 AromasinHormonal Therapy 08/02/2012 Tamoxifen
Log in to post a reply

Oct 6, 2012 12:30AM dltnhm wrote:

wrsmith2x -
I can't answer your questions, but wanted to let you know I am thinking about you, praying for you as you search for answers. Your fear is reasonable and there is absolutely nothing wrong with being there. I wish that I could sit with you and let you pour your heart out. Or just sit and be with you in silence. Sometimes there are no words.

On the stage iv forum, there is a thread entitled "if you are not stage iv ... post your questions here". You will probably get some answers from women who have been there and are there recurrence-wise.

Hugs dear one.

Diana

Age 48 @ diag. Left SS NS UMX, Sent.Node Biopsy & part. Axillary (Node) Ex., & DIEP recon. on 1/10/12; AC DD Chemo began 2/22/12 ended 4/4/12; Taxol 12x: infusions began 4/26/12 ended 7/11/12! Rads x28: 8/06/12 - 9/13/12; Tamoxifen began 10/01/12

Dx 11/23/2011, IDC, 2cm, Stage IIIa, Grade 2, 7/19 nodes, ER+/PR+, HER2-
Log in to post a reply

Oct 6, 2012 01:04AM Denali wrote:

I don't have mets, but after going through chemo in 2009 for Stage 2 BC, I was diagnosed with kidney cancer last Feb.  I had an MRI on my spine due to back pain and they accidentally discovered a large mass on my kidney--a second primary.  I had my left kidney removed, no chemo or radiation.  It was Stage 3 and I'm very scared too.  I take anti-depressants and saw a therapist for awhile, who said I was showing classic symptoms of depression.

I stopped seeing the therapist a few wks ago and I'm better, but still scared and have my 'Xanex' days every so often.  I have to go for scans every 6 mos to make sure the kidney cancer doesn't metasticize.  I freak out every time I have to go.

I don't know how to live without the fear. 

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
Log in to post a reply

Oct 6, 2012 02:44AM Beckers wrote:

I had bilateral breast cancer. Is it a recurrence or second primary? Technically. I wonder what that says for my odds. They make itnsound like it's a second primary. Hmmm

Diagnosed with bilateral or synchronous breast cancer

Dx 3/2012, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+, HER2-Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+Surgery 04/10/2012 Lumpectomy (Both)Surgery 08/09/2012 Mastectomy (Both); Reconstruction: DIEP flap (Both)Hormonal Therapy 10/13/2012 Tamoxifen
Log in to post a reply

Oct 6, 2012 08:11PM, edited Oct 6, 2012 10:31PM by markat

This Post was deleted by markat.
Dx 11/9/2011, IDC, 4cm, Stage IIb, Grade 3, ER+/PR-, HER2+Targeted Therapy 12/05/2011 HerceptinChemotherapy 12/05/2011 carboplatin, Taxotere
Log in to post a reply

Oct 6, 2012 08:58PM marywh wrote:

I truly dont think your going to get a lecture from anyone pertaining to your fear.But I will tell you my story. Its not to make you afraid but because you asked. My story starts in 2008 when I was dx with triple neg. breast cancer-had chemo ,lumpectomy and rads in that order. I had no problems again until aug. of 2011. Was dx'd again,same breast different area. There was some question as to whether it was the same cancer or a new one. Didnt really matter as I had to have a mastectomy in aug. of 2011. Had a hard time healing cause of the radiated skin, but started two new chemos in october of 11. Couldnt take either of those due to side effects so they put me on 2 more. Finished those in feb. of 2012. Things were going along well. went back in in Aug. of 2012 for a check-up and onc. immediately set me up for a biopsy on some little spots on my incision scar. Came back positive again.  Went in for a pet scan and bone scan. Came back with mets to the liver and maybe bone and lung. They are concentrating mainly on the liver cause it was the biggest. started me on 2 more chemos which I do three weeks on one off. Have also had to have another biopsy on my other breast, may have skin mets there. So as far as lecturing about fear? Iwould tell them to kiss my a.. Dont judge anybody else until you put their shoes on and walk around in them. I hope I dont sound bitter, Im really not. Bewildered yes, scared yes. But I also like to support people who ARE scared because I sure know where your coming from.Big hugs and best wishes-mary 

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2-Chemotherapy Adriamycin, CytoxanChemotherapy Doxil, XelodaSurgery 06/15/2008 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 09/01/2008 ExternalSurgery 08/05/2011 Mastectomy (Left)Chemotherapy 08/25/2012 Abraxane, carboplatin
Log in to post a reply

Oct 6, 2012 10:09PM Beckers wrote:

Denali - thought I would mention my mom had stage IV kidney cancer almost 20 years ago. It's one of the cancers that can just stop and "poof" ... magically gone. Well...I prayed my head off too :-) just a little story of hope for you.

Diagnosed with bilateral or synchronous breast cancer

Dx 3/2012, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+, HER2-Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+Surgery 04/10/2012 Lumpectomy (Both)Surgery 08/09/2012 Mastectomy (Both); Reconstruction: DIEP flap (Both)Hormonal Therapy 10/13/2012 Tamoxifen
Log in to post a reply

Oct 7, 2012 11:53PM Denali wrote:

Thanks so much, Rebecca, for sharing your mom's story with me!  As I'm sure you know it really does help to hear favorable outcomes to this dreaded disease. 

 I'm so glad that wrsmith2x wrote a post about her fears as I certainly share those fears.  Sometimes I think I'm crazy with fear.  Feels good to know there's others who feel this way too.  People who have never had cancer just don't understand.

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
Log in to post a reply

Oct 8, 2012 10:16AM kathleen1966 wrote:

I don't know if this will help, but I have not had a local recurrence but was told my rate of recurrence was 30%. And I researched Paget's disease and read somewhere that if the cancer is in lymph nodes than the prognosis was poor. It may have been over 40% recurrence or near that.  These figures were for a distant recurrence for me. I had a mastectomy the first time. These percentages scare me very much. They seem very high.  I think it really is impossible not to worry about it but what we need to try to do it just try to push it out of our minds some-how. Right now, you are here.  And there is a 60 chance your cancer will not come back. That is also high. I know the ole we are not statistics is said frequently and it doesn't help much with the intrusive worry. It is a very hard place to be worrying about this. I think the percentage of having metastasis after a local recurrence is higher if you have had a mastectomy. It is low if you had a lumpectomy. Did you have the BMX after the cancer returned locally and a lumpectomy the first time?  If this is the case, than you really are on the good side of this statistic.They didn't get it all the first time. I think you have a perfectly good chance of being perfectly fine with no recurrence. Your oncologist is wrong.

Dx 7/26/2010, DCIS, 6cm+, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Dx 7/26/2010, Paget's, 1cm, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Dx 7/26/2010, IDC, 1cm, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Surgery 08/23/2010 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 09/07/2010 carboplatin, TaxotereTargeted Therapy 09/07/2010 HerceptinRadiation Therapy 03/01/2011 External
Log in to post a reply

Oct 8, 2012 01:06PM wrsmith2x wrote:

Thanks for all the posts.  It always helps me to air my feelings.  In response to Kathleen the first time I had a lumpectomy, and chemo and radiation and all of those items were supposed to make my chance of recurrence somewhere around 7%.  The surgery was to get clear margins (which they did), then the chemo was to get any leftover cells and then radiation was to ZAP whatever might still be lurking.  One of those things failed.  OR, the cell went somewhere else and waited to return to it's favorite place to grow.  I don't know.  All I know is that the stupid beast came back.  And now after the BMX, which supposedly had clear margins (even though one of the two tumors was underlying the chest muscle) I'm given a stat of 40%.

So if it came back after all those things I did to prevent it (and at 7%) what is keeping it from coming back after only surgery (at 40%)? 

I know I need to do things to keep me from dwelling on it....its just so damned hard. 

1st dx, 2007, IDC, Stage 1 (1.2cm), grade 3, 0/1 node, TriNeg.....2nd dx, 2011, IDC, Stage 2 (3.2cm & 1.5cm) grade 3, 0/1 node, Tri-Neg......BMX with DIEP 2/16/12.

Log in to post a reply

Oct 9, 2012 08:48AM toomuch wrote:

wrsmith2x - I totally understand your fear. I was a wreck for awhile after diagnosis. I had a relatively rare BC in the literature it was called a lethal variant. I had 2 large nodes with ECE. Finally, my MO said stop looking at the statistics. The way I see it, your risk of recurrence is either 0 or 100% depending on whether or not it happens. This time you were on the 100% side. I hope that you find yourself on the 0% side after this treatment cycle!

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before"

Dx 7/13/2010, ILC, <1cm, Stage IIa, Grade 2, 2/12 nodes, ER+/PR+, HER2-
Log in to post a reply

Oct 9, 2012 10:52AM lelela wrote:

Wrsmith2x.....have you been BRCA tested?

Hang in there....I know it is a challenge as I too worry too much about recurrences...all we can do is our best .....

Lisa

Log in to post a reply

Oct 9, 2012 12:13PM, edited Oct 9, 2012 12:24PM by kathleen1966

Do you think getting a second opinion would help?  Perhaps this person would be better at explaining why they are not doing more treatment. I think your worry is valid the way you have explained it and you need more support from someone in explaining the why part...I think this would ease your fears. And you are right, it is a horrid beast!!!

I'm going to try and find the much better calculator I found once than the page/link you posted!  With much better survival statistics! 

Dx 7/26/2010, DCIS, 6cm+, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Dx 7/26/2010, Paget's, 1cm, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Dx 7/26/2010, IDC, 1cm, Stage IIIa, Grade 2, 4/15 nodes, ER-/PR-, HER2+Surgery 08/23/2010 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 09/07/2010 carboplatin, TaxotereTargeted Therapy 09/07/2010 HerceptinRadiation Therapy 03/01/2011 External
Log in to post a reply

Oct 9, 2012 03:42PM wrsmith2x wrote:

I am BRCA negative, thankfully.  And there is research out there that I have read that says that having chemo, again, after a mastectomy does not statistically change the chance for recurrence.  Docs told me I could take chemo again.  I said no.  Didn't do its job the first time so why should I epxect that it would do its job the second time?  Anyway, maybe that decision hasn't helped my emotional health either.  

Thank you, all, for the kind words.  You always help me. 

1st dx, 2007, IDC, Stage 1 (1.2cm), grade 3, 0/1 node, TriNeg.....2nd dx, 2011, IDC, Stage 2 (3.2cm & 1.5cm) grade 3, 0/1 node, Tri-Neg......BMX with DIEP 2/16/12.

Log in to post a reply

Nov 29, 2012 02:41PM minxie wrote:

wrsmith2x - as you know I had a local recurrence too, similar time frame. Did you ever get any solid answers on this? I have the exact same fears... there's so little data out there on what a local recurrence means for the future. My doctors told me not to worry, but 40% - that's bad :(

IDC, lumpectomy, SNB, axillary ND 12/08. DD AC, Taxol. Then DCIS found 7/09, BMX w/lat flap reconstruction. Local recurrence 5/12, TN, 1 cm, node negative. Implant removed.

Dx 12/4/2008, IDC, 1cm, Stage IIa, Grade 3, 2/8 nodes, ER-/PR-, HER2-Chemotherapy 02/01/2009 Adriamycin, Cytoxan, TaxolSurgery 07/27/2009 Lumpectomy (Right); Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap (Both)
Log in to post a reply

Nov 29, 2012 04:38PM wrsmith2x wrote:

Minxie, 

I never did get anything definitive but my oncologist did talk like the odds are pretty high of it coming back again since the local recurrence was before 5 year mark.  He said that chemo for keeping Stage IV folks alive was almost better than the chemos that are used for "curing" other Stage folks.  I don't know what to think.  My oncologist is very upbeat anyway and I trust him so I just wait.  I feel like I'm swimming in jello, if you know what I mean, but am still doing things that I want to do now....just in case.

I think of you often, mostly because our recurrences were so similar and around the same time.  I pray we never deal with this again.  Namaste', Minxie.  Hugs to you and may God Bless us with good health.

1st dx, 2007, IDC, Stage 1 (1.2cm), grade 3, 0/1 node, TriNeg.....2nd dx, 2011, IDC, Stage 2 (3.2cm & 1.5cm) grade 3, 0/1 node, Tri-Neg......BMX with DIEP 2/16/12.

Log in to post a reply

Nov 29, 2012 07:39PM anamerty wrote:

i had a new primary after almost 14 yrs opposite breast this new one been different type triple negative i guess with family hx and so many with brca1 in the family oncol gave me a poor prognosis although at stage 1 grade 3 clear nodes but the tn is the bad one so i was told my recurrence was 40%without chemo and 20% with chemo so is this to include local recurrence or mets into organs? i am not even sure that i want to bother taking anymore chemo at this point cuz i feel that this tn will come back right away or its still there and all this sickness is not worth the lack of quality of my life if its not going to wofk i just think that my chances of beating this is very low

Dx 1/25/1999, IDC, <1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+Dx 8/3/2012, IDC, 1cm, Stage Ia, Grade 3, 0/7 nodes, ER-/PR-, HER2-Surgery 01/25/1999 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Radiation Therapy 03/01/1999 ExternalSurgery 08/27/2012 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 10/15/2012 Cytoxan, Taxotere
Log in to post a reply

Nov 30, 2012 09:52AM wrsmith2x wrote:

Anamerty, 

The 40% chance was with or without chemo.  In fact, I chose not to do chemo because Onc. told me there is no good research that doing chemo again would make that much difference in either local recurrence or getting mets.  I figure I will get it or not.  Either way I'll deal with it as best I can.

I wish you much luck and pray that you continue your life disease free.  Namaste'.

1st dx, 2007, IDC, Stage 1 (1.2cm), grade 3, 0/1 node, TriNeg.....2nd dx, 2011, IDC, Stage 2 (3.2cm & 1.5cm) grade 3, 0/1 node, Tri-Neg......BMX with DIEP 2/16/12.

Log in to post a reply

Nov 30, 2012 01:31PM minxie wrote:

I also choose not to do chemo after the recurrence. My first batch of chemo was something I'd never want to repeat unless there was a 100% proven benefit. It's obvious that my body only partially reponds to chemo anyway.

I heard that when TNs recur it's usually at 2 years, where for ER+ it's 5 years. I would think that even though we didn't make it 5 years, we're still doing good because our recurrences were way past the 2 year mark. Right? In my time on the boards I've only seen one TN recur at 6 years, the rest were 1 to 2. Just trying to make us feel better. What I HAVE NOT found is many people who have local recurrences and then get mets in a few months/years. I know it must happen,though - but the datas not out there.

I think of you often too, wrsmith2x. May the coming new year bring us health and peace.

IDC, lumpectomy, SNB, axillary ND 12/08. DD AC, Taxol. Then DCIS found 7/09, BMX w/lat flap reconstruction. Local recurrence 5/12, TN, 1 cm, node negative. Implant removed.

Dx 12/4/2008, IDC, 1cm, Stage IIa, Grade 3, 2/8 nodes, ER-/PR-, HER2-Chemotherapy 02/01/2009 Adriamycin, Cytoxan, TaxolSurgery 07/27/2009 Lumpectomy (Right); Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap (Both)
Log in to post a reply

Dec 1, 2012 05:43PM lelela wrote:

Amamerty....I am so sorry for your recurrence, but just so you know, BRCA+ does not increase your recurrence status, it can cause new primaries like the one you just were diagnosed with. Studies show that BRCA woman respond best to treatment which is why many PARP inhibitor studies are based on the biology of BRCA mutations. I was told this by Dana Farber and by 2 other renown oncologists from Sloan Kettering, so hang in there and fight. I also am triple negative , recently diagnosed, BRCA1+, and had ovarian cancer almost 17 years ago.....hang in there girl...I would look for a new oncologist if you are not happy with your current one and he can't provide you support.....you can do it...remember...Most woman do survive triple negative, especially early stage.....
Lisa

Log in to post a reply

Dec 3, 2012 11:32AM, edited Dec 4, 2012 02:27PM by InspiredbyDolce

This Post was deleted by InspiredbyDolce.

After breast cancer, it's Plan B (as follows): Low-fat, low sugar, fish, veggies, whole grains, fruits, water, green tea; 8 hours vigorous exercise weekly; and Metformin. If you would like info about Metformin to discuss with your Onc, please PM me.

Dx 12/27/2011, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-Surgery 01/04/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Chemotherapy 02/02/2012 Cytoxan, TaxotereSurgery 05/30/2012 Reconstruction: Breast implants (permanent) (Both)
Log in to post a reply

Dec 3, 2012 11:55AM, edited Dec 4, 2012 02:27PM by InspiredbyDolce

This Post was deleted by InspiredbyDolce.

After breast cancer, it's Plan B (as follows): Low-fat, low sugar, fish, veggies, whole grains, fruits, water, green tea; 8 hours vigorous exercise weekly; and Metformin. If you would like info about Metformin to discuss with your Onc, please PM me.

Dx 12/27/2011, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-Surgery 01/04/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Chemotherapy 02/02/2012 Cytoxan, TaxotereSurgery 05/30/2012 Reconstruction: Breast implants (permanent) (Both)
Log in to post a reply

Dec 4, 2012 01:00PM anamerty wrote:

debra thank you so much for your posts they both made me cry i do see 2 oncologisfs at cancer centre and i do feel they know what theyre doing but i know your right when saying poor is the medical term thats used but not easy to see it on paper im thinking why fight the fight and feel like shit if my prognosis is poor they told me it was because of the tn factor i also found out that the 1.8 cm lump found july was the same ultrasounded after mri in feb and that along with another small dcic turned from cysts to cancer 5 months later my 2nd oncologist said that they were so early stage at that time they didnt show but because of the tn it wouldnt havd made no difference if it had have showed in feb because id still would have had the exact same surgery and chemo but it would have beeb finished by now so that isnt good cuz youd think that catching them even earlier would have changed the out look but no they said no

Dx 1/25/1999, IDC, <1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+Dx 8/3/2012, IDC, 1cm, Stage Ia, Grade 3, 0/7 nodes, ER-/PR-, HER2-Surgery 01/25/1999 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Radiation Therapy 03/01/1999 ExternalSurgery 08/27/2012 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 10/15/2012 Cytoxan, Taxotere
Log in to post a reply

Dec 17, 2012 09:32AM netty46 wrote:

HI I RECURRED AFTER 12 YRS.  SAME BREAST.  DONE WITH CHEMO  C/T 6 ROUNDS. JUST HAD MY SURGERY. NO NODES INVOLVED.    THEY SAID I HAD EXCELENT RESPONSE TO CHEMO.  MY FIRST CHEMO 12 YRS BACK WAS CMF.  I WILL HAVE RADS NEXT.  YES I AM TN.  I KNOW OF ANOTHER RCURRED AFTER 13, 10, 7 YEARS THERE ARE PLENTY. ONE ON THIS SITE AFTER 26 YRS.