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Topic: Stage 4 diagnosed - what's the life expectancy?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Feb 9, 2010 05:36PM

Lemongrove wrote:

I was diagnosed with an Oestrogen receptive Invasive Ductal Carcinoma of the breast, and Lymph Nodes on the 11th December 09. Had Masectomy on the 15th January 2010, and 14 of 24 Lymph nodes was cancerous. At first they thought it was stage 3, but had a whole body bone scan yesterday, which showed hot spot in skull. Saw Oncologist today, and he said the hot spot was seconday bone cancer. Consequently, they have now started me on a drug called Letrizole, which is an aromomatase inhibiter (because I am post menopausal), and will be started on a monthly infusion of  bisphosphonates. So far Ultrasound has not found anything in my organs, but the Oncologist wants me to have a CT scan, just to make sure. He say's that they want to keep things like surgery, and chemo in reserve, should the cancer progress. Basically, I am so afraid and wonder how long I have. The Oncologist said the average is 2-3 years but could be as much as 10 years. What should I expect? 

Dx 11/11/2009, IDC, 3cm, Stage IV, Grade 2, 14/24 nodes, mets, ER+/PR-, HER2-
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Feb 9, 2010 05:46PM cancersuks wrote:


Sorry to hear about your diagnosis and a heartfelt welcome to this club that no one wants to belong to!  My oncologist only told me that Stage IV means the cancer can't be cured but the goal is to contain it.  Many women who post here are living with cancer mets and longer than any 2-3 years.  I would take that comment with a grain of salt; it probably is textbook but not reality now with all the new treatments. 

Dx 11/29/2009, Stage IV, 2/8 nodes, ER+
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Feb 9, 2010 05:59PM - edited Feb 9, 2010 05:59PM by konakat

It depends on so many factors -- where your mets is, organ involvement and to what extent, your general health, how well you respond to your various treatments.  Once stat I consider is a 20% of living 5 years.  But who knows?  We're all very different.  You can go in remission (NED) for years and then get a recurrence, or not -- something you can't predict.  It can be slow or hit you fast.  It can be very difficult to predict.

One thing on your side is that it's in you bones as opposed to an organ and that being ER+ adds to the arsenal of treatments available to you.  Even with the years of experience and training your onc can only give you a broad ballpark figure.  You just can't have expectations other than you will do well until told otherwise.  Sucks, but that's all we have.  I wish I could tell you more.  Hugs,


Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Feb 9, 2010 06:03PM Leah_S wrote:

I have a good friend who's stage 4. Her onc refers to it as a 'chronic illness' and refuses to give her an expiry date.


Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Feb 9, 2010 06:30PM 3katz wrote:

Lemongrove - so sorry you are a member of this club. But you have come to the right place. I agree with what the others wrote. If the mets is in the bone only, it can be treated as a chronic disease. Yesterday was my 2 year mets-versary and I'm still going strong. My mets is limited to the bone (hopefully). It is a wise idea to get a CT done, just to be sure. You can still live a long, productive life with mets. There is a thread in this forum where someone just celebrated 17 years. Wow! There is hope. As Elizabeth wrote everyone is different. I hope nothing else surfaces and the AI & Zometa (I'm assuming) kicks butt! Are you Her2neu+? If so, there are meds for that as well that have had some success.

Amy D - orig dx 2005, stage III / recur-mets Stage IV dx 2008, multiple bone lesions / er/pr+, her2neu+++ / Dx 5-2010 brain met
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Feb 9, 2010 07:09PM RobinWendy wrote:


Check out this website for article on Phase III clinical trial that uses a virus to kill certain types of primary cancer and 95-100% of metastatic cancers.  Phase I and II trials had a 42% response rate on primary cancers and they are predicting that it will kill at least 95% of Stage IV cancers.  

There are so many new treatments on the horizon that will offer better outcomes than are available now.  I tried to do a hyper-link but it didn't take.  You can copy and paste the link into your web browser and find the article or yourself.  No expiration dates!!!


dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver. Dx ER+/PR+, HER2-
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Feb 9, 2010 09:11PM Cathy-CA wrote:

Robin -- thanks for posting that link.  I found the concept fascinating and these types of advances give me hope.

Lemongrove -- the answer is no one knows.  It has taken me a couple months of being Stage IV to figure out that all it really means is that I'm more likely to die of cancer than some other cause.  However, no one can tell me exactly what is going to happen.  I find that just living the same way I would had I not been dx'd is the best for me. 

Dx 10/24/2007, IDC, 2cm, Stage IV, Grade 3, 0/3 nodes, mets, ER-/PR-, HER2-
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Feb 9, 2010 09:18PM blondiex46 wrote:

thanks Lemon for posting this as I have wondered also and I think there are not any one answer and I think we are all individuals and that will will be final answer.  My onco said, well you aren't dying today, tomorrow or next month..


Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Feb 9, 2010 11:12PM getwell wrote:


      Sorry that you are Stage IV. It sucks. How long will you live? No one knows! It is a crap shoot.

We can only hope that we will do well on the meds available and that there is a cure on the way. 



Dx 5cm, Stage IV, Grade 3, 11/25 nodes, mets, ER+/PR-, HER2-
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Feb 9, 2010 11:19PM Mazy1959 wrote:


I have bone mets in my spine on the 5th lumbar. I have passed the 3 yr mark for mets and dont plan on pushing up daisies anytime soon. Hugs and may your treatment kick cancer butt...Mazy

Bone marrow mets in 90% of bone marrow. Dx 3/6/2003, ILC, 3cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Dx 12/19/2006, ILC, 4cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR-, HER2- Dx 4/25/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Dx 8/4/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Chemotherapy 8/9/2012 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 10, 2010 12:23AM AnneN wrote:


I was stage IV at initial diagnosis last March and I am still feeling perfectly well. You can live a long time with just bone mets. I agree with everything the women above have said. Just this Christmas, an inspiring lady by the name of Rita Arditti died after having lived for 30 years with stage IV breast cancer. The reason the docs can't give you a clear answer on life expectancy is because it's really not possible to know.

Good luck to you!


Faslodex/Zometa/complementary supplements. Mastectomy with immediate DIEP at NOLA on 12/15/10. Dx 3/20/2009, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Feb 10, 2010 12:42AM Reneepals wrote:

And just think Rita Arditti had mets to her lungs in 1974! Her bone mets came around 2006. There are so many factors that go into survival. She gave credit to her response to Hormonal treatment and the fact that her breast cancer was not super aggressive.
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Feb 10, 2010 04:44AM ElaineD wrote:

It's an impossible question to answer, as we are all so different, and respond differently to treatements. What may be very effective for one, will be of no benefit to another. But surprised that your onc has said 2-3 years with only bone mets at present. Try to take a day at a time-we all want 10 years, of course we do,but actually living in the present, and not worrying about the future/how long we may live, is by far an easier option. We certainly can't guarantee that you will survive and do well-not even your onc can do that. But at the moment, rest assured that you have many treatments to try. You'll be on one form or another of treatment for the rest of your life-that's something we all have in common! But who knows....you may be one of the lucky ones who can attain stability/NED and manage to have some breaks from treatment along the way. Good luck .

(Where in the UK are you, from a fellow Brit!?)

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Feb 10, 2010 07:49AM katie11 wrote:

I would sack the onc!  The very first onc I went to gave me 2 years without me even asking!  I went somewhere else where the attitude was more positive which helped me enormously.  I'll have been living with mets for 4 years this July and am still responding well to treatment.  Stay positive!  It's hard, I know, but it's the only way you can live with this disease.

Katie xxx

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Feb 10, 2010 08:29AM JeninMichigan wrote:


I am sorry you are part of our club.   However, please do not let the numbers your onc threw at you get you down.   My surgeon gave me some very grave numbers after I found out my diagnosis (liver and bone mets). She said 8-12 % of a 5 year survival.  My onc said that is a load of crap.   Breast cancer is like 15 different diseases and comparing one kind to the other is like comparing totalling different diseases.  The statistics lump everything together.   She said it is a chronic disease that can be managed.   She told me to view it like diabetes.   I am coming up on my two year anniversary and I have been cancer free for 1 1/2 of those years and just had a scan am still cancer free.   My onc told me she is getting another partner to help her with issues that pertain to us long time survivors that are not as serious as chemo side effects.  She said so many advanced cancer patients are living long lives and have issues such as hormonal driven problems, sexuality, anxiety, diet, maintenance protocols,.   To me that is so encouraging.    You mets are in the bones and that is encouraging as well.   My bones mets healed are not visible on scans at all anymore.   

You may want to look into a second opinion with your onc.  My first oncologist told me he was only going for quality of life and the race for the cure was off.    I walked out and never looked back.   Best move I ever made.

Wishing you all the best.


Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Feb 10, 2010 08:49AM Lemongrove wrote:

Firstly, ElaineD, it's nice to hear that there are other Brits on here. I am from Sussex in the UK.

I also want to apologise for asking such a crass and insensitive question - I do appreciate that many will be just as upset as me, so I hope I didn't stir up buried emotions.

The fears I have are about not being able to share more time with my family, and  that the end might be horrible. I have started looking at the Dignitas Website now, but don't think I would have the courage to do what so many other Brits have done. Maybe as time goes on I will think differently.

Dx 11/11/2009, IDC, 3cm, Stage IV, Grade 2, 14/24 nodes, mets, ER+/PR-, HER2-
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Feb 10, 2010 09:05AM lukejessesmom wrote:

Personally, I think I would look for a new dr. if he told me 2-3 years life expectancy and you have just been diagnosed in December.  He has no clue how long you will live...nor how you will respond to treatment.  In my opinion, a little too early to start predicting your future.  Live your life based on how YOU feel, not on what your doctor tells you. 

Luke & Jesses Mom Dx 11/4/2008, IDC, Stage IV, mets, ER+/PR-, HER2-
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Feb 10, 2010 09:17AM LesleyLP wrote:

Hi Lemongrove, another Brit here, from Somerset

I have never asked for an outright prognosis because I really don't want to hear any answer they may want to give me.  All I will say is that the first onc I saw on my simultaneous diagnosis of bc and bone mets said "I've got secondary ladies doing well ten years on" which I found encouraging and then the senior consultant onc, a rather dour Scotsman, said "We can generally manage this for several years" I got the impression he definitely wasn't one to mince his words and that "several" definitely means more than two or three.  It's impossible to say, but if you have a general look at a lot of people on these boards, both with bone mets and other organ involvement, there are a lot doing quite  nicely for far longer than two or three years.  I plan on being here for 20 years at least - so I don't ask for a prognosis, ever!  xx

Dx 12/18/2008, 1cm, Stage IV, mets, ER+/PR+, HER2-
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Feb 10, 2010 09:32AM tami444 wrote:

My first oncologist told me not to get my hopes up ... after I had looked up the stats at the time (16% 5-yr & 3-4% 10 year) and decided to fight like the devil ... and before I ever started any treatment.  I loved my second opinion because she said they are just stats, you can't compare yourself to them, we don't know how you will respond to treatment, you're young & healthy so we're going to throw everything we can at you, .... we're going to shoot for erradication. She was much more positive.  I agree that the attitudes of your healthworks are important. 

For me ... it's now been ... so long I have to think about it now .... a few weeks short of 4 years since I started chemo (I already had my mastectomy by then) and I'm doing fine! 

Lemongrove,  I almost died of an allergic reaction ... once I recovered, it taught me that I might not die of cancer.  You never know when an accident might occur.  I would ignore any date/time you've been given, believe it is possible to live 'forever' with this disease, and enjoy life every moment you can along the way. 

Diagnosis @ 39 yrs old: Dec 2005, IDC, 8cm, Grade 3, R Mastectomy Jan 06, Stage IV, bone mets, ER+ PR- HER2+, chemo, rads, lymphedema, stacked DIEP Feb 08
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Feb 10, 2010 09:53AM Maryiz wrote:

Lemongrove, I would not treat with anyone who has such a negative attitude.  It is absolutely wrong.  Many of the leading cancer centers are now calling stage IV chronic.  We, of course, know some women who have an aggressive form of BC and it is 2 years.  Typically, ER positive is not aggressive.  Hang in, new treatments are on the horizon.  

Robin, thanks for that website, it really does sound hopeful.  I am hoping to be here for the cure.  Maryiz 

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Feb 10, 2010 10:31AM Lowrider54 wrote:

I am so sorry you have joined the club - this is the best site you could be on! 

The statistical medical average is 2 -3 years - it is only a statistic and means pretty much nothing to bone mets folks other than being able to collect accelerated benefits on a life insurance policy.  Don't let that scare you - mets to the bone is possibly the most treatable form of mets - the goal is to keep it in the bones and the treatments are many - an entire arsenal if one fails.  I am on my first round and doing well.  I will have scans next month and if they show no progression - I will continue on with the hormonal and bisphosphonates until this combo fails - I happen to be on Arimidex and Aredia.  Then we will move to the next combo and the next and the next and so on until chemo/surgery becomes the option - 7 - 10 years down the road if all fails and as the others have told you - many, many more if treatments are successful.  It is so scary and so well, downright horrific at first, I am only 5 months into this dx and with the aide of 'better living through pharmaceuticals' and the support of the folks here - I have begun to learn how to live with this 'chronic' disease. 

Lots of Hugs


ps...I have been writing a little intro to new stage IV folks and would be happy to share - if you would like to pm me, I can send it to you - it is rather long to post here but it is how I have gotten through the horror and it may help you

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Feb 10, 2010 01:08PM Maryiz wrote:

Also wanted to add, that Zometa is a relatively new drug for bones, and as we speak, Amgen has received FDA approval for an even better bone drug, Denosumab.  You see, it is so fast now.  It is hard to keep up day to day, there are so many new treatments.

Robin, do you have any more articles I can read on the reovirus.  The one you cited didn't have the stat of 95 percent predictability of working on most cancers.  I would love to read more if you have it.  Maryiz 

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Feb 10, 2010 01:43PM cc4 wrote:

This is my first time writing and my first day at this site, and the first one I read was lemongrove.  This could have been me in December  of 05! I have stage 4, mets to the bone(base of my spine to the roof of my mouth) and also mets to the lungs. I am on femara and on a monthly infusion of pamidronate. I asked in December of 05 how long and was told 2-3 years.  I was devasted because I thought i had pneumonia not cancer, kids still at home.  Well fast forward to 2010 and I feel great- ok should lose some weight, and funky thin hair thing at the back of my head I blame on femara but doing great.  Two weeks ago was hit by a car- I was fine,  but thought life is short - keep positive, explore options and believe!  Hugs to you and will think of you

Dx 12/18/2005, IDC, Left, 6cm+, Stage IV, metastasized to bone/lungs, Grade 3, 22/24 nodes, ER+, HER2-
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Feb 10, 2010 03:08PM RobinWendy wrote:


In the article, it says that 95-100% of metastatic tumors of any kind have the pathway.  I might have extrapolated from that as so far no trials have been conducted on people with mets.  However, the Phase 1 and 2 trials had people with primary cancers and the response rate was 42%.  They gave no statistics as to what percentage of those studied had the pathway.  I am not aware if anyone with BC was studied.  But I was very heartened by the statement that almost 100% of all metastatic disease has the pathway opened.

Lemongrove... I am into my 7th year with mets to lung and liver.  I have always been asymptomatic with completely normal liver and lung function.  I was told flat out by an onc at Memorial Sloan-Kettering that I would NOT live five years.  I guess she was just plain WRONG!!


dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver. Dx ER+/PR+, HER2-
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Feb 10, 2010 05:13PM Padiddle wrote:

Lemongrove:  So much wisdom in these replies.  Sorry you are in the group....hugs.  I got the news in Oct 2009, of stage IV.  It's hard not to wonder how long, but I'm trying to focus on feeling better, adjusting to the treatment and accepting what I cannot change.  I've had good days and bad days, but feel I'll have much better days when treatment starts alleviating my symptoms.  I look forward to dancing with NED, and I'm not making funeral arrangements.  Take care.  Jean
Mets to sternum, ribs, thoracic and lumbar spine, femur, pelvis, lungs, skin, peritoneum, adrenal glands Dx 8/2000, IDC, 1cm, Stage IIB, 10/13 nodes, ER+/PR+, HER2- Surgery 9/10/2000 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 11/17/2000 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/20/2001 Breast Dx 10/5/2009, IDC, 2cm, Stage IV, 1/1 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 3/1/2010 Femara (letrozole) Surgery 11/30/2011 Mastectomy: Left Chemotherapy 4/4/2012 Taxol (paclitaxel) Chemotherapy 11/26/2012 Gemzar (gemcitabine) Chemotherapy 2/4/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 1/6/2014 Halaven (eribulin) Chemotherapy 4/28/2014 Navelbine (vinorelbine)
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Feb 10, 2010 05:15PM donnabee wrote:

well, yesterday was my 1 year metzerversary with extensive bone mets. My life expectancy? I expect to live another 17 years -- til i'm 70. then I plan to reevaluate my goals.

Don't let anyone tell you when you should plan to roll over and die. Set your own ambitious time table, says I.  hugs--donna

From time to time even a blind squirrel finds a nut Dx 2/9/2009, IDC, 2cm, Stage IV, Grade 1, mets, ER+/PR-, HER2+
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Feb 10, 2010 05:53PM Fitztwins wrote:

I don't believe in stats, never asked after my second year ...

I read something once.

There are lies, damn lies, and stats...

Seriously, some of us will live 2-3 years with mets. Some of us will live 5, 7, 10, 17 + years...we ALL have to believe we will be in the 10+ year club.

Hang in.


who plans on seeing her boys graduate HS (9 years from now!!!) 

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Targeted Therapy 5/5/2010 Tykerb (lapatinib) Hormonal Therapy 8/2/2012 Hormonal Therapy 6/15/2013 Arimidex (anastrozole)
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Feb 10, 2010 06:19PM Maryiz wrote:

Robin, thanks.  I should have known that since you are an attorney, you would have extrapolated.  I like that.  I am a bit obtuse.  Let's hope for this one to really work. Maryiz

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Feb 10, 2010 08:44PM blondiex46 wrote:

Just want to thank you all what you wrote, I am lucky my onoc won't tlak that but it isme that thinks it is terminal like 2 -3 years and you so helped me today!.


Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Feb 10, 2010 10:29PM LivingIt wrote:

How lovely! I wish I had read this a month ago - or two. I was diagnosed with mets to Lung, Liver and Bone and decided I'd be gone in two years. I Googled and couldnt find numbers above 20 months. So I retired on disability from my career as a physical therapist, got accelerated benefits from my life insurance, wrote a Will, got a DNR, bought my two year old daughter diamond ear rings for her sixteenth birthday and I plan to pre-pay my funeral. That done, I'm now free to take my 9 year old to disney (Im mostly asymptomatic), refence my farm and build a barn. Just because I WANT TO. Hell - if Im around in 5 years and this money runs out, I'll go back to work.. ha ha. for now its for my medical bills, my cam therapies, my peace of mind.

Sheeesss! What a way to live. Imagine a day when you don't think about your cancer. I cant even come close!

Lemongrove - You sound so collected at this early date. Dont worry if you have ups and downs. I did and spoke (just twice) to a hospice councelor cause I figured she'd know more about my situation. It was great  and now, like I said, Im starting to move on with my actuall LIFE - which is still, as it turns out - right here.

Zoh - Don't Postpone Joy!!!! 11/07 AC +Taxotere, then Tamoxifen x2yrs. Aromasin x 6 months, Taxotere x 1.5 yrs, Abraxane 2months, Tamoxifen 1 month, Xeloda Diva x 1 month crazy progression - Gemzar/Faslodex/Xgeva Dx 11/11/2007, IDC, 5cm, Stage IV, 2/8 nodes, ER+/PR+, HER2-
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Feb 10, 2010 10:43PM vickib wrote:

Lemongrove - I am so sorry for your diagnosis but I am glad you are here. Listen to these smart ladies and keep your chin up. I know you will get great comfort from these boards and I wish you all the best!

Vicki B. Cincinnati, OH Dx 3/3/2006, IDC, 4cm, Stage IV, Grade 3, 12/17 nodes, mets, ER+/PR+, HER2+

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