Stage IV Breast Cancer survival

Dx June 2009 by PET CT with grade 3 tumor in left breast and small lung nodules at 29 Yrs.(ER,PR,HER negative).Chemotherapy: 3 Cycles of TAC.No nodes found in PET CT in Aug 2009.Recurrence in Dec. 09 in same breast.MRM surgery.No medication.PET CT (18 F FDG) in Jan 2011.Node 13 x 12 mm found in left axillary node with SUV max of 4.26, Preartoric node SUV max of 3.73-6.19, Left internal mammary node with SUV max of 14.32, Right lung nodule SUV 4.17, Two right infra clavicular lymphnodes suv 5.6-6.84,right internal mammary node suv 4.89,prevascular node suv 4.96.
My questions are
1.What is future treatment?What are alternative strategies for chemotherapy?TAC/FAC/AC,etc.?
2.What is median life survival time in years?
3.What is SUV?What is its significance?
4.Any survival stories from Stage IV?

[katarina777]

Dear porus;

   I am very sorry for your having to go through all of this at such a young age.

I am also afraid that I won't be of much help, and I want to explain why.

I have been around the cancer scene, beginning with a breast cancer diagnosis much like yours in terms of stage and aggressiveness.

I have had chemo, also TAC, hormone treatment, (which is not indicated for you) and radiation.

Over the past three years since first diagnosis My cancer has advanced and spread and I have had more treatments, both with chemo and radiation. And then of course surgery, a total mastectomy. Chemo can be repeated or switched, but once you have an area radiated, i.e. your lungs, this cannot be repeated.

All the treatments seem to work quite well, except when they do not work or cannot be tolerqted by a patient and which is a really serious problem unless some stuff is found to work.

But it appears that once your cancer has spread, all treatments only work for a limited time, and often then you proceed with/to another treatment.

You have not had radiation most likely because your breast cancer had already spread at the time of diagnosis.

Both surgery and radiation are local treatments and are sometimes not indicated in a case like yours as the treatment wouldn't reach the metastasized cancer. so you need chemo for that,  and/or hormone treatment in cases where the cancer feeds of estrogen.

  Nobody knows how long you will live, and statistics are  not very helpful, and outdated by the time they are published.

It all depends much more on your case and circumstances than anything else, and that really is no excuse, or an attempt to avoid the subject.

I have been told I would be dead within weeks to a few months;  others telling me it may be years.

I have found that as much as I want honest answers, when I do get feedback that is very specific in either positive or negative direction, neither, or any predictions  are the least bit helpful, not to mention that you cannot depend on the expert's prognosis and most of them realize this themselves and therefore won't give it.

It also depends on how well you respond to any given chemo/other treatments, and how long the well periods are between cancer progression. The quality of your life also matters, and then the relationship quality between you and your doctor and other staff members involved in your care. the latter is a huge aspect. There are many more considerations besides those.

  I also think that luck has a lot to do with all, (either bad or good luck), and that the  direction of someone's attitude is highly overrated.

I believe that you have not had any, or more responses,  because it is almost impossible to follow  what you are saying, with half of the words you use communicated with abbreviations that I, and surely many others as well, have no  clue what they stand for.

I really think you need to go over this report with your doctor and have him/her spell out what each and every one of those abbreviations stands for. That alone is the first step.

But I have also learned that when I feel information is withheld from me, that is not always true at all, and rather often reflects that neither radiologists nor oncologist can always speculate as to what is going on, and have to take it step by step.

I think often it is the patient who has the best idea about what's going on at any given time, and which is understandable as only you live with your body and have for the longest?

Hope this helps a little, Katrin

[porus]

Thank you Katrin,  have to corrcet myself, it was 6 cycles, 5 TAC and one TC.There are two choices for me now.To chase every small nodule on PET CT with chemo or  wait till any symptoms appear.Luckily I am in perfect health and spirits now (apart from the scan) witho symptoms.

[Elizabeth727]

Don't give up!   3 3/4 ys ago I had Stage 1V breast CA- also receptor negative, that had spread to several lymph nodes and right humeral head- bone lesion.   I was started on Taxol, Avastin and Carboplatin as well as Zometa and steroids (plus Zofran and Kytril for nausea).  The lesions were gone in a month by PET scan (truly miraculous).  I think  Avastin was mostly responsible for the cure, though my doctor says it was all three meds working together. I continued treatment for about a year. I did receive radiation for six weeks also.   I am thankful to God, first and foremost for lining up everything.  Specifically, I had insurance that covered the meds (expensive).  Can you see if you are a candidate for that protocol?   I will be praying for you.  

[katarina777]

I was diagnosed with breast cancer just around the same time as you with stage 3c. (in June, 07) The cancer began to spread about a year later to brain, liver, lungs, and now swine. Whenever there is another exacerbation, I feel horrible both physically and mentally/emotionally, and I am always the first to know.

But with you you started out with advanced disease, right? The treatment may be more effective if you are hit with strong chemo for  everything all at once vs. starting a new and nother one each time something new comes up?

I don't know that and am just wondering.

I have never heard of stage 1 5. I thought I was stage 4, as a general way of knowing you have advanced spread. but nobody has given me a number value and I wonder what the difference is, and if you may know and tell me.

how do you get to 5, or 1 5, and must you first pass through a stage, or start out with a 4?

Thanks, and I hope you will be well as long as possible. how old are you? I am 52.

Katrin

[katarina777]

PS: I left out that when I am getting worse again and then start a new treatment that works, I almost immediately feel better in body, spirit and mind, and for me I think the changes are most cancer related, i mean the physiological process and not a new upset,  or grieving emotionally related to the...whatever?

I also meant 'my spine', as I am sure you figured out and not 'my swine'. (LOL)

KATRIN

[todd30]

I wanted to add something, I work with a lady who had breast cancer spread to her lymphs and lungs this was over 12 years ago. She had surgery and did chemo. She was told everything from there on out would be pallative therapy. She was then told she was free of cancer after all the trements this was 12 years ago. She goes in for scans once a year and is still fine. She did a clinical trial. I dont know anything more then this. She is awsome! Oh she also told me at one point she was in a hospital bed eating boiled veggies because she couldnt eat anything else her white blood count was so low she was covered in plastic and family couldnt visit. She thought for sure she wasnt going to make it. She also had a blood transfusion at one point. So it if it could happen 12 years ago there is hope! I will include you in my prayers.

[porus]

Added to earlier post, I finished 1 more TAC and 2 TC cycles.Adriamycin was stopped fearing cardiac dysfunction. After this no nodes in PETCT from 2009 to 10.DX with small nodes in lungs in 2010.No treatment from 2010-11.Had a tuberculosis lesion in lymph node and had to undergo Anti Tuber treatment for 6 months.Finally in the I had a malignant tumor same place (supravacular node just above collar bone on the side of the neck).Got CT chest & Neck done. Took 25 fractions of palliative radiotherapy.PET CT done and found that neck nodes are resolved and still nodes are in lungs.Started on capacetabine 500 mg 14 days + 7 days off for two cycles.Now in July 2012 on complaint of headache Dx with multiple lesions in brain.Now treatment changes to palliative RT to head  with capecitabine + Dexamethazone.
1.I would like to know if this is a standard course of actions.
2.Is anything better available?
3.What are my survival chances?

[bluebutterfly2222]

I am sorry to inform you that katarina777 is no longer with us.
She passed away last year.

I would suggest you pose your questions to your oncologist, who has both the medical expertise and all the details of your case, and would therefore be in the position to answer them.

If you don't have confidence in your oncologist's approach, you could seek a second opinion with another oncologist.

Best wishes,
bluebutterfly