Progression. :(
 

Hi my friends

I was on the TDM-1 trial here in Australia, now kicked to the curb.

I was diagnosed at stage 1V, and went straight to chemo, I had a complete response, so onc recommended against mastectomy. No rads either. I was NED for about six months before another breast lump, I then had lumpectomy and axillary dissection, whilst still only on Herceptin. After another four months, lymph nodes in my sternum reappeared, so I started TDM-1. Stable after first scans, but now another breast lump and lymph nodes.

So, I am thinking rads for sternum lymph nodes (not bone mets) and mastectomy. Thus holding on to chemo for another time, what do you think? I could start chemo now instead, but as it keeps coming back in the same spots, maybe local treatment will do the trick?

I am trying to stay positive, and I realize this is probably standard treatment for early stage, but not necessarily stage 1V.

If all goes to plan ( I am yet to have a brain ct, as that was left off the appointment list) I will be NED for Christmas! That's positive thinking for ya, right?

Sorry, this turned a little long winded, thanks for listening, and any feedback anyone would like to give

Dawn xx

Re: Progression. :(
 

Re: Progression. :(
 

Love and prayers sent!

Re: Progression. :(
 

Am kind of furious that your onc recommended against mastectomy. pls remember you have rights. you can get another onc just to be safe. i know you know this already but just as ant-eaters eat ants, breast cancer cells' first choice on the menu are breasts. (trying to calm down here; am so angry on your behalf that you still have breasts right now.)

Re: Progression. :(
 

I never really know what to say when someone isn't given the cheeriest news. Certainly will be praying for you. If I were in your position, that breast tissue would be gone in a heartbeat, all of it. Chemo wasn't the end of the world. I'd go there too. When I made my decision, I decided that I only had one chance to throw everything at it and that's what I did. Only you can decide what you can do. Again, you'll be in my prayers.

Re: Progression. :(
 

We are given so many choices and that is good.
We are given so many choices and that is difficult.
I'm thinking 2nd opinion if you don't have a strong instinct sbout it all. Wish I had an answer but all I have is wishes to be able to relax and figure it out.
This stuff bites. Wishing you prayers and luck.

Re: Progression. :(
 

a second opinion sounds good. i like the idea of herc/ tykerb as well as rad. or herc /perj. Lorrraine has had many chemos. didnt get much out of abraxane, got more from herc/ gemzar than anything else before t dm-1. God Bless, Heal

Re: Progression. :(
 

I think another opinion would help and send good wishes as have no sound advice to offer.

Re: Progression. :(
 

Dawn,

I'm sorry you are finding another lump/node. Surgery promotes angiogenesis (growth of new blood vessels) and encourages cancer spread. Your doctors are following the treatment guideline.

http://www.cancer.gov/cancertopics/p.../Patient/page8

Yet a new study/report has shown certain advantage of surgery:

Ann Surg Oncol. 2013 Sep;20(9):2828-34. doi: 10.1245/s10434-013-2998-2. Epub 2013 May 8.
Meta-analysis to determine if surgical resection of the primary tumour in the setting of stage IV breast cancer impacts on survival.
Harris E, Barry M, Kell MR.
Source
Department of Breast Surgery, BreastCheck, Mater Misericordiae University Hospital, Dublin, Ireland.
Abstract
INTRODUCTION:
The role of primary tumor excision in patients with stage IV breast cancer is unclear. Therefore, a meta-analysis of relevant studies was performed to determine whether surgical excision of the primary tumor enhances oncological outcome in the setting of stage IV breast cancer.
METHODS:
A comprehensive search for relevant published trials that evaluated outcomes following excision of the primary tumor in stage IV breast cancer was performed using MEDLINE and available data were cross-referenced. Data were extracted following review of appropriate studies by authors. The primary outcome was overall survival following surgical removal of the primary tumor.
RESULTS:
Data from ten studies included 28,693 patients with stage IV disease of whom 52.8% underwent excision of the primary carcinoma. Surgical excision of the primary tumor in the setting of stage IV breast cancer was associated with a superior survival at 3 years (40% (surgery) versus 22% (no surgery) (odds ratio 2.32, 95% confidence interval 2.08-2.6, p<0.01). Subgroup analyses for selection of patients for surgery or not, favored smaller primary tumors, less competing medical comorbidities and lower metastatic burden (p<0.01). There was no statistical difference between the two groups regarding location of metastatic disease, grade of tumor, or receptor status.
CONCLUSIONS:
Patients with stage IV disease undergoing surgical excision of the primary tumor achieve a superior survival rate then their nonsurgical counterparts. In the absence of robust evidence, this meta-analysis provides evidence base for primary resection in the setting of stage IV breast cancer for appropriately selected patients.

Please check out the 'Calling all stage IV Sisters' thread http://her2support.org/vbulletin/sho...+stage+sisters to compare notes and get encouraged by other stage IV sisters' successful stories.

Sending you good vibes.

Re: Progression. :(
 

Dawny,
I am sorry that you are faced with progression.
I too had mets (liver) upon diagnosis and was devastated. Chemo took the place of surgical intervention. I was told it would be a "disservice" to have surgery. That said, the lymph and breast tumors, found in 2010, have never come back, I guess that would be a complete response to chemo. On the other hand, tumors have reappeared on my liver, hence the ablation since it is the only place I recur. I have been NED since that time, and am on Arimidex and Herceptin. I am hoping that it takes me a long way. I fear my blood tests every three weeks. Mortality on paper. Scary to look at the clinic's CEA report on the portal, slowest I ever open my laptop, even though I do it every five minutes looking for The News.
So, my story speaks to both options.
Wishing you the right path and peace and serenity while choosing,
Karen

Re: Progression. :(
 

Dawn, I am sorry to hear your news. The rads and surgery sound like a good option to me, leaving further chemo as another weapon in reserve. A second opinion might give you reassurance too. I'll have all my digits crossed for you!
Best wishes.... Pam

Re: Progression. :(
 

I also 2nd the 2nd opinion option. It is always nice to hear from enough doctors until you can feel confident of your choice.
hugs sarah

Re: Progression. :(
 

Oh Dawny, sorry to read your news. I reckon it's always good to have some options up your sleeve (chemo), so maybe local treatment is worth considering now. I think it will also give some peace of mind too having 'it' banished. However, I concur with others here, that another opinion would also be worth considering. Keeping you in my thoughts.
Marie x

Re: Progression. :(
 

Jackie: once again thank you sooooooooo much for your excellent research....we owe u a ton!!
re: "RESULTS:
Data from ten studies included 28,693 patients with stage IV disease of whom 52.8% underwent excision of the primary carcinoma. Surgical excision of the primary tumor in the setting of stage IV breast cancer was associated with a superior survival at 3 years
(40% with surgery)
versus 22% with no surgery......

CONCLUSIONS:
Patients with stage IV disease undergoing surgical excision of the primary tumor achieve a superior survival rate then their nonsurgical counterparts."

Wow! Wow! Wow!
Getting rid of primary site of cancer ...the breast.... saves real lives! All the heartache and loss in the world, resides in the dif between forty percent (with mastectomy) surviving and just 22 percent (without mastectomy). Huge huge numbers of women in this study!

I can't believe someone put out a study discouraging us from mastectomy (i.e. "surgery creates blood vessels afterward." ) Gosh, it's not blood vessels that are trying to take our lives, it's cancer cells! The primary site of breast cancer, the breast, that is, is full of them! My oncologist told me that non-her2 cancer cells double in number every 90 days but her2 cells double in a third of that time. wow wow wow.

How ironic "save the tatas!" etc is the Breast Cancer Awareness month..october's...message. I say off with them! (although i really really really miss mine.)

Re: Progression. :(
 

Hi dawny, I rarely post but do drive through Geelong on the way to Barwon Heads a bit.
If i had cancer in my breast i would want to get rid of it even tho i know often the practice is to keep it there. One woman I meet years ago at Royal Melbourne was furious she wasn't given surgery and really pushed for it. It did happen.
To the others, in Australia we are unable to get Heceptin with Tykerb unless we pay heaps for one of them. Phil suggested herceptin/Perjeta and that is also impossible to get unless on trial.
Good lcuk.

Re: Progression. :(
 

Dear Dawny,

I'm sorry you've had progression. I'm sure that must be difficult news for you and your family. I also think you might want to get a second, and maybe a third, opinion on what to do next.

I'll add a couple of bits of information about the mastectomy issue. The studies on whether excision of the primary tumor helps with stage 4 are, at the moment, all retrospective. That means they take data from other studies and try to retroactively control for other variables. It's not useless, but it's not the same as a controlled, prospective study. One of those is being conducted right now. No results yet.

There's a theory that the primary tumor suppresses the growth of the metastases. That's why surgery might promote angiogenesis (the mets acquiring their own blood supply). There's also a theory that general anesthesia might suppress the immune system and promote cancer growth.

In my part of the world, when I was diagnosed, Taxol and Herceptin was the standard of care. Taxol wasn't too bad, except for the rash I developed. Later I read of a study that suggested that Taxol might help the body's immune system recognize and clear cancer cells.

I have not had surgery. The primary tumor isn't gone, but it's much smaller and less active. Since I don't have tumor markers in my blood (some people just don't), it helps us monitor treatment effect and evaluate my status.

Nobody actually knows exactly what's going on with metastasis. Until they know that, it won't be possible to know for sure whether excising the primary tumor is a good idea or a bad one. In any event, it's not the tumor in the breast that kills, it's the remote ones. (And, again, the mechanism for how the primary tumor and the mets relate to/interact with one another is not understood.) However, there's pretty good evidence for improved overall survival with systemic treatment (Herceptin for us HER-2 folks) plus local treatment of the mets.

Whatever you decide, don't second-guess yourself. Make the best choice you can and then keep moving forward.

Good luck, Friend.

Re: Progression. :(
 

This is a very difficult decision to make as many doctors are still divided on the benefit of local treatment for Stage IV. There's been research that tumour load reduction helps in overall survival. Some doctors also believe that the removal of the primary tumour will eliminate the source of BC stem cells.

For me, I'd the mastectomy as I just wanted them out. It gave me a huge psychological relief. I'm just over 5 years out with liver met.

Hope you'll find your answer soon.

Re: Progression. :(
 

Dawn you are in my prayers. Gods blessings to you and your family.

Re: Progression. :(
 

Sending prayers to you Dawny. IMHO, I agree with Nordko - like Lady Macbeth said - "Out, out damned boobs!".

all the best
caya

Re: Progression. :(
 

Thank you all for your help and good wishes. I am starting radiation tomorrow on the lymph nodes in the sternum, 15 days at a whopping strength, apparently.

The brain scan came back clear, and surprisingly so did the biopsies of the breast lump! My breast surgeon who performed the biopsies in her office, says there is a good possibility that she missed the lump. So after I finish rads, I will go back to my original breast clinic, and have an ultrasound guided biopsy. I would love it to really be negative, but since it is the third breast lump, I think it will be positive. I will then have a mastectomy. Ooh, I wonder if I can have that done just before Christmas, surely that would get me out of holding cooking at my house! Lol

Dawn xx