Confused and Scared After Latest Onc. Consult

KPhilli

My mom was diagnosed with IDC (single node involvement) and had surgical date for mid Feb. MRI revealed spine mets at c7 and t3 levels.  Met with surgical oncologist today who is now referring her to a medical oncologist and has cancelled her surgery.  He claimed that taking out the breast lump before attending to spinal situation would be working backwards. I suppose I defer to his judgement but why on earth would it NOT be a good idea to take it out of her breast.

Does this make any sense to any of you? He said it's all breast cancer and the cancer on her spine is more dangerous to her than the cancer in her breast.

This rollercoaster ride is unnerving. Any thoughts/feedback would be enormously appreciated.

Issymom

I only know what I read and I am sure someone else will pipe in soon but Breast Cancer in the Breast never kills us.  It is when it spreads outside and that is probably why they want to treat the spine mets first before they get worse.  So sorry for the news, there is lots of great support here.

Beesie

I'm so sorry that you and your mother are going through this.  What the doctor told your mother today makes perfect sense.  Breast cancer in the breast is, relatively speaking, harmless.  The problem is when breast cancer leaves the breast and starts to affect other parts of the body.  Since your mother has breast cancer on her spine, that is a much more serious condition than the breast cancer that is in her breast. Continued growth of a tumor on her spine can impact her mobility, etc..  So yes, it makes perfect sense to address the issues with her spine first. 

I hope that helps. 

MarieKelly

There is recent research that indicates removal of the primary tumor increases survival time. The mantra has generally been, up until fairly recently, that when someone is diagnosed with distantly metastatic disease, treatment is palliative only and that primary tumor removal is usually not done. -  a pessimistic twist on the old "horse already out of the barn" way of thinking.  If the eventual intent after treating the spinal mets is to then remove the primary tumor within a reasonable amount of time, that's all well and good. However, I think it's quite possible and most likely probable that unless the patient absolutely insists that the primary be removed, it won't actually ever happen.

KPhilli,  I would encourage you to read the following information and then continue researching this subject on your own. You'll find research information that supports both removing the primary and not removing the primary. If it were me, I would insist upon it, even if it were just a lumpectomy to remove the bulk of the primary. My best wishes to you and your mother at this difficult time.

Removal of Primary Tumor in Metastatic Breast Cancer May Prolong Survival

http://www.medscape.com/viewarticle/709253

Surgery of the Primary Tumor in Metastatic Breast Cancer: Closing the Barn Door After the Horse Has Bolted?

http://jco.ascopubs.org/cgi/content/full/24/18/2694

Surgical Removal of the Primary Tumor Increases Overall Survival in Patients With Metastatic Breast Cancer: Analysis of the 1988-2003 SEER Data

http://www.springerlink.com/content/w407004j4lm52h20/

konakat

Hi -- As far as I know, it is not uncommon, and often preferred, to deal with the mets first and not remove the breast lump.  In any case, the chemo your Mom will get will deal with the BC in boith her breast and bones.  It sounds contrary to logic but it's the way to go.  Also, if your Mom gets surgery later on, her body won't be battling the mets, she'll most likely will have an easier time with her surgery.  Hugs,

Elizabeth

Edit to add:  Thought I'd mention that even with earlier stage women chemo may be given first to shrink the tumor and give a better surgical outcome.  So, it will help your Mom.  xoxoo

MarieKelly

Konacat, not removing the primary tumor when initially diagnosed with metastatic disease is not uncommon simply because that's the way it's been done for decades and it's going to take considerable time for the "standard" to change over completely. These changes don't happen overnight and there's always going to be those from "the old school" who are resistant to accepting things that are contrary from the way it's always been done before.  

More information for  KPhilli - the first one being a plain Engish summary of one of the above links that is posted here on the BC.Org web page.

http://www.breastcancer.org/symptoms/new_research/20090922b.jsp

http://jco.ascopubs.org/cgi/content/full/24/18/2743

Complete Excision of Primary Breast Tumor Improves Survival of Patients With Metastatic Breast Cancer at Diagnosis

"...RESULTS: Women who had complete excision of the primary breast tumorwith negative surgical margins had a 40% reduced risk of deathas a result of breast cancer (multiadjusted hazard ratio [HR],0.6; 95% CI, 0.4 to 1.0) compared with women who did not havesurgery (P = .049). This mortality reduction was not significantlydifferent among patients with different sites of metastasis,but in the stratified analysis the effect was particularly evidentfor women with bone metastasis only (HR, 0.2; 95% CI, 0.1 to0.4; P = .001). Survival of women who had surgery with positivesurgical margins was not different from that of women who didnot have surgery.

CONCLUSION: Complete surgical excision of the primary tumor improves survivalof patients with metastatic breast cancer at diagnosis, PARTICULARLY AMONG WOMEN WITH ONLY BONE METASTASES.

KPhilli

Thank you for your thoughts and for info on current data on this issue.  In fairness to the surgeon (nobody ventures outside their hyperspecialized area of expertise, it seems), he did say that bone mets can respond very favorably to trt. and if medical oncologist is satisfied with results, mom may have a later surgical appt. to remove lump and nodes.

I guess it would be premature to make a call before even seeing the med. oncologist, but I will certainly ask his/her opinion on this matter. I don't know why, but it makes all the sense in the world to me, a simple but not stupid layperson to get the primary tumor out.  Crazy thing in all of this is that my mom looks and feels just fine. She is completely asymptomatic at the moment.

I cannot express how grateful I am for your input and thoughtfulness. The scope of this website knocks me out every time I log on and the amount of activity is, well,...it's alarming.  I'm having a great deal of difficulty coping with this event...it's shaken me to the core, but I so very much want to do the right thing for my mom. Princess Margaret Hospital in Toronto does seem like the right place for her to be.

Sending love,

Krista

konakat

Interesting -- Just last month someone I know at Dana Farber was told the tumor wouldn't be removed!  There probably was some other underlying reasons for not doing the surgery immediately.  I guess it depends on a lot of factors in deciding what is best for the patient.  My initial thought is get it out!  But if there is a better outcome waiting, I'd wait.

cancersuks

I'm sorry your mom and you are going through this as well.  Rollercoaster ride is right...I was diagnosed with mets to my spine in Dec. '09.  I had surgery to repair the fracture on my spine but at no time did anyone recommend trying to remove the cancer there.  I know that is slightly different from what you asked; but it appears that when it spreads the fight is not about removing cancer but containing it.  Right now I'm on femara and zometa infusions to fight the cancer.  The first time I was diagnosed they brought out all the big guns, this time, my oncologist said, we always want to have a train leaving the station, i.e, in treatment options.

tami444

KPhilli,

probably safe to address the spine met first.  Another point that may not have been discussed yet ... does your mother have tumor markers?  Here's why ...

At my first week check-up after my mastectomy & node removal (only one node positive), results came back and I had bone mets (confirmed a few days later with a biopsy).  I did NOT have tumor markers, no primary tumor ... and bone scans take a long time to see change (like six months).  So I did six months of chemo without even knowing if it was working.  IF your mother has no tumor markers but keeps her primary tumor and starts chemo, you should be able to tell that the chemo is working by seeing a decrease in the primary tumor.

Good Luck and so sorry to see you here!

Beesie

MarieKelly, as I read the studies that you linked, it appears that evidence is starting to compile that suggests that removing the primary tumor is beneficial over the long-term for women who have Stage IV cancer.  What I didn't see (or did I just miss it?) is any suggestion the the tumor removal should be done first, prior to any other treatment.  That was the issue that I saw in the original post, and that's how I framed my answer. As I said (and as others have said as well) "it makes perfect sense to address the issues with her spine first." 

I realize that there are debates as to whether a primary tumor should be removed in cases like this and I am not informed enough on this to add to that discussion.  But, as Elizabeth pointed out, it is not uncommon, even in cases where there isn't bone mets, to give chemo first, prior to surgery.  So assuming that it's chemo that will be given to address the cancer in the spine, this will hopefully stop the growth and even reduce the size of the tumour in the breast as well.  After that, surgery to remove the breast tumour can still be considered, and based on the information that you've provided, having surgery might be a very wise decision.  But as I read it, the issue hidden in the original question was whether chemo should be delayed so that surgery can be done first, and even with the new information, I still don't think that this would be advisable.

Krista, I went to PMH and would recommend it to anyone.  PMH is considered one of the top cancer hospitals in the world, both in terms of treatment and in terms of research and clinical trials.  All they deal with is cancer so your mother is being treated by very experienced experts in the field.  The hospital also has support services available to deal with all aspects of cancer, whether physical or emotional or psychological.  For anyone diagnosed with breast cancer, it's a great place to go.

AnnNYC

Beesie, you are right that none of the references Marie Kelly cited say the primary tumor should be removed first, and in fact here is a study suggesting that mets should be attended to first, then the primary tumor at a later time:

http://www.ncbi.nlm.nih.gov/pubmed/18357493
Rao R, et al. Timing of surgical intervention for the intact primary in stage IV breast cancer patients. Annals of Surgical Oncology 2008;15:1696-702.
University of Texas Southwestern Medical Center, Dallas - review of all breast cancer patients between 1997 and 2002 presenting with an intact tumor and synchronous metastatic disease. Patients who underwent surgery in the 3-8.9 month or later period had improved metastatic progression-free survival. CONCLUSIONS: Surgical extirpation of the primary tumor in patients with synchronous stage IV disease is associated with improved metastatic PFS when performed more than 3 months after diagnosis. Resection should be planned with the intent of obtaining negative margins.

KPhilli

Thanks ladies, you are all so wonderful.

In my mind, the critical variable in the published paper was whether the margins are pos. or neg. I'm not exactly sure what that means but I gather it is a measure of the degree of tissue surrounding the tumor which is cancer free. If I am reading the article correctly, early excision of the primary tumor has significant effects on survival ONLY if margins are negative, and no effect if they are positive. Thing is, how the heck would you be able to determine that without doing the surgery? Very confusing.

I'm crying as I write this post, in part because I'm so worried about my mom, but also because I'm so moved by the caring gestures of women I have never met. I've told my mom about my new best friends in the cyber world and how there are many stories on this site of women who have managed mets in various locations of their bodies for some time. Not sure what the future holds (guess that's always been true, just more poignant now), but thanks to all of you, I'm slowly becoming more able to wrap my head around this. Mom is ALIVE, TODAY...and I am grateful for that.

Thank you,

Krista

MarieKelly

Bessie and Ann,

I have no argument with postponing surgery on the primary tumor in favor of first treating metastatic disease. If it was simply a matter of delaying the surgery for a few months, there wouldn't be any issue about it but that's not usually the case.  Currently, common practice is not ever removing the primary at all.when someone has stage IV at diagnosis and the wisdom of that practice is what's now being challenged and what I personally take issue with. Whether or not it ever happens at all depends on luck of the draw in getting a doctor who believes the primary tumor should be removed.

The NCCN, in it's information for patients regarding stage IV disease at diagnosis, makes it clear that patients should not necessarily expect surgical removal of the tumor as part of the treatment. .

http://www.nccn.com/breast_cancer_IV.aspx

"...If your initial diagnosis is stage IV metastatic breast cancer, SURGERY WILL ONLY BE UNDERTAKEN UNDER CERTAIN CIRCUMSTANCES, with radiation considered as another option. You should discuss whether you meet the criteria for these treatment possibilities with your doctor".

KPhilli,

Here's a link to info about a clinical trial hoping to more officially resolve the controversy about whether or not removal of the primary tumor in stage IV patients is beneficial.

http://clinicaltrials.gov/ct2/show/NCT00941759

You'll notice the following statement  -

"The purpose of this study is to study patients presenting with stage IV breast cancer. Stage IV means that the breast cancer has spread to another part of the body outside the breast. THIS STUDY IS IMPORTANT BECAUSE IN DIFFERENT PARTS OF THE COUNTRY SOME PATIENTS ARE BEING OFFERED SURGICAL TREATMENT FOR THE BREAST TUMOR AND SOME ARE NOT...." 

33skidoo

I had an "excisional biopsy" (lumpectomy) of breast tumor and 1 lymph node to get the receptor status and plan treatment overall treatment.  I then went for back surgery for my bone mets, which were very advanced.  It was much easier to get the biopsy from the breast than from the spine

AnnNYC

MarieKelly, no argument here -- I recently posted some of the same articles you did.  Most of the retrospective studies show benefit for women who are diagnosed Stage IV in removing the primary tumor, and I think that's very important to know.  I'm glad the prospective study is being done.