Is there benefit in surgery for stage iv's
 

Hello there I am a newbie that would like some help please. May 8th 2012 my daughter Lorna then 21 years old was diagnosed with secondary breast cancer. She has just had her 22nd birthday. Basically she found a lump in her right breast, tests were done, and they also found her lymph nodes were also infected. From there she had CT, MRI and BONE scans which showed it also in her spine. The oncologist said the only scan that picked up the cancer in the spine was the mri as it is only just there, she used the words 'very subtle' When Lorna was first diagnosed we were told the plan was to have treatment first of Docetaxel, Herceptin and Zometa for the bones, 6 sessions every 21 days last one on the 14th Sept, but would stay on Herceptin and Zometa indefinitely. This was to shrink the tumour so when they did surgery it would hopefully not be so invasive. Then she would have radiotherapy. After 3 chemo’s an mri showed the secondary in the spine was stable. However today we had an appointment with her oncologist. Fantastic news is that she had to have a good old feel for her to be able to find the lump which is brilliant as before she had no trouble finding it! It has shrunk significantly but there is a but, and a rather big but as far as I’m concerned so I’m hoping someone might be able to put my mind at ease.
Lorna’s oncologist told us today that it is very unlikely now that Lorna will have surgery as she has secondary to the spine, she will continue to have Herceptin indefinitely along with Zemeta after her last chemo next week! They will then monitor her. Surely they need to remove the remainder of the lump from her breast otherwise the cancer is still there?? Her oncologist did explain how Herceptin works but I still don’t understand why they are not going to remove the lump or even the breast. I just want it out of her!! If the primary is still there can it not then spread further? Lorna’s oncologist did say though that she was going to discuss Lorna’s case with her surgeon who is the man we saw in the first place when we first found the lump. The oncologist wants to see Lorna again around 26th October to access and see where we go from there. This does give us a little time to do some research ourselves but I think a second opinion could be on the cards.
Any help or advice would be really appreciated!
Many Thanks
Yvonne

Re: Is there benefit in surgery for stage iv's
 

Tykerb, This medicine crosses the blood brain barrier for the spine, Personally i would get at least a lumpectomy. Have they talked about radiation to the spine? Do you know what here ER PR (hormone levels are)? Did she have a Brain MRI?I would go for a second opinion! She is too young not to battle this full on especially with positive lymph nodes. You found a good site here with lots of good people. And incredible knowledge, faith, hope and determination. Also post to the new comers forum as well.

Prayers to you
Darita

Re: Is there benefit in surgery for stage iv's
 

can someone copy this to the Newcomers site for Vonny, so she can get input for the everyone.

Thanks Darita

Re: Is there benefit in surgery for stage iv's
 

Thank you Darita, I don't know Lorna's levels. She did have a brain scan, a full body scan i.e. CT, MRI and bone. What do you mean about crossing over the blood barrier? We were told Herceptin treats the whole body so that's right....yes? I have copied my post to the new members as well.
love
Yvonne xx

Re: Is there benefit in surgery for stage iv's
 

Herceptin and most chemo are large molecules and cannot cross the blood brain barrier.

Re: Is there benefit in surgery for stage iv's
 

Vonny i canunderstand wanting to get the lump out. I think they leave it to use as an indicator to see if the treatment is working.
This might be a dumb question to everyone but what has the spine got to do with BBB? Is it if the cancer goes thru into the bone marrow? I have numerous spinal mets so left wondering.

Re: Is there benefit in surgery for stage iv's
 

She's young, she has HER2, it has to be treated very aggressively. It sounds as if she's getting good advice but why not get a second or even a 3rd opinion. Personally, I'd want the thing taken out and then radiation and chemo and Herceptin and ???
I'd rather overtreat than under particularly given her age.
It's miraculous that it was discovered in someone so young, she is extremely lucky.
hugs and love
sarah

Re: Is there benefit in surgery for stage iv's
 

The spinal cord is part of the Central Nervous System (Brain + Spinal cord). The abstract below uses 'Blood-spinal cord barrier' in the similar sense to 'Blood-brain barrier'.

J Cereb Blood Flow Metab. 2012 Aug 1. doi: 10.1038/jcbfm.2012.113. [Epub ahead of print]
Blood-spinal cord barrier pericyte reductions contribute to increased capillary permeability.

Winkler EA, Sengillo JD, Bell RD, Wang J, Zlokovic BV.
Source

1] Department of Physiology and Biophysics, University of Southern California, Zilkha Neurogenetic Institute, Center for Neurodegeneration and Regeneration, Los Angeles, California, USA [2] University of Rochester Medical Center, School of Medicine and Dentistry, Rochester, New York, USA.

Abstract

The blood-spinal cord barrier (BSCB) regulates molecular exchange between blood and spinal cord. Pericytes are presumed to be important cellular constituents of the BSCB. However, the regional abundance and vascular functions of spinal cord pericytes have yet to be determined. Utilizing wild-type mice, we show that spinal cord pericyte capillary coverage and number compared with the brain regions are reduced most prominently in the anterior horn.

Regional pericyte variations are highly correlated with: (1) increased capillary permeability to 350 Da, 40,000 Da, and 150,000 Da, but not 2,000,000 Da fluorescent vascular tracers in cervical, thoracic, and lumbar regions and (2) diminished endothelial zonula occludens-1 (ZO-1) and occludin tight junction protein expression.

Pericyte-deficient mutations (Pdgfrβ(F7/F7) mice) resulted in additional pericyte reductions in spinal cord capillaries leading to overt BSCB disruption to serum proteins, accumulation in motor neurons of cyotoxic thrombin and fibrin and motor neuron loss. Barrier disruption in perciyte-deficient mice coincided with further reductions in ZO-1 and occludin.

These data suggest that pericytes contribute to proper function of the BSCB at the capillary level. Regional reductions in spinal cord pericytes may provide a cellular basis for heightened spinal cord barrier capillary permeability and motor neuron loss.Journal of Cerebral Blood Flow & Metabolism advance online publication, 1 August 2012;

Re: Is there benefit in surgery for stage iv's
 

Think spinal cord, not vertebra. The same barrier for brain and spinal cord. There is no barrier for the bones of the spine.

Re: Is there benefit in surgery for stage iv's
 

Vonny,
The most important lesson that I have learned from this site is to be your own advocate. Fight to win every single battle in this war.

I am not a Dr., so I am reluctant to offer medical advice but.....I was stage IV. They performed a mastectomy. I asked for extra radiation which was kind of unheard of but my Onc said...well maybe in will prevent a local recurrance. I pushed because of the support on this site.

Well....here I am 5 years later. Granted a scarry signature line because of the liver met but.....I have not had a local recurrance.

If you get the slightest hint that your daughter is not being give a 110% chance to fight on all fronts...get another opinion. Push....who cares if you ruffle a few feathers?

Here is a boost of fiesty energy to help out....Lori

Re: Is there benefit in surgery for stage iv's
 

Hi Vonny -
I was diagnosed with spine mets at my initial diagnosis - so I was stage IV from the beginning. I was 42. The standard back in 2004 was no surgery for Stage IV but the thinking has been changing slowly. There have been studies that show benefit to removing the primary tumor on patients that are relatively healthy and who have cancer that is responding. It's something to talk about - I finally had a mastectomy a few years after my diagnosis. I'm still stable - and I feel so much better having removed my killer breast....

I hope you daughter has doctors who are willing to work with her on this and that she can help take control of her medical decisions.

Re: Is there benefit in surgery for stage iv's
 

I concur with what Lisa is saying- I also was stage iv with spinal mets, liver and lymph nodes upon diagnosis. I was told that there was conflicting research on the benefit/risk of removing the primary tumor. Some studies showed that keeping the primary tumor helped suppress metastases, while others showed an advantage to removing the tumor. My breast tumor eventually grew through my skin leaving me with an open wound. I had a mastectomy last August and was surprised by the relief and psychological boost it gave me. I too have remained stable on Tamoxifen and Herceptin.

Re: Is there benefit in surgery for stage iv's
 

Hi Ladies
Thank you for all the support and sharing your stories with me. Lorna does have an excellent oncologist, the best in her field and is very proactive.
I think the reason for my questions is I am just so scared that they will make the wrong decision; there is no room for mistakes here.
I have read all the links that have been posted here for me to read and I really do think it is down to personal choice and trust in the oncologist. At the end of the day it is Lorna who has to make that final decision and I can only guide her, just so awful being in such a scary place.
Lorna had her last chemo on Friday just gone and we were told that her oncologist had changed her next appointment with her, bringing it forward by 2 weeks, no explanation as to why was given. We will find out on the 12th October which way this is going to go.
Thank you again for all your help and support it is very much appreciated
Much love
Yvonne xx

Re: Is there benefit in surgery for stage iv's
 

Hi Vonny~
So sorry to have to welcome you and Lorna to our community, but know we are a strong, scrappy bunch and are here to offer whatever guidance or support we can!
Just wanted to share a thought that I don't think anyone else has brought up yet...
In order for Lorna to have surgery I think it would be likely that her onc/surgeon would take her off Herceptin for a period of time before surgery, and then not resume again until a few weeks post surgery. My feeling would be that I wouldn't want to be off treatment for any period of time so early into my Stage IV diagnosis. I would want to continue on agressive systemic treatment to treat the entire body for as long as possible and continuing with Herceptin, Zometa and even rads as needed.
Remember, a BC tumor in the breast is not instrinsically life threatening - it is when the disease metastasizes to the vital organs that it then becomes truly dangerous.
However, localized treatment to decrease the tumor load on the entire body is something to consider.
These are the "options" that we are offered. There is no "right" answer - we just have to get educated, trust our medical teams and go with what is the best fit for ourselves & our conscience.
Also, please remember, even though your daughter is Stage IV she has many treatment combos/options available to her, especially with the approval of Pertuzumab & the pending approval of TDM1. That's a very good thing!
I was diagnosed @33yo with Stage IV disease at primary diagnosis, with liver mets and have been surviving this disease for 10years. Be aggressive, fight hard and try to feel comfortable & optimistic about the choices you make, no second guessing!
We are all here to offer you our opinions, support, thoughts and prayers to help you & your daughter stay strong, and when you can't, lean hard on us. We're here for you~

Keep the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!

Re: Is there benefit in surgery for stage iv's
 

Wow Jessica, you have certainly had one hell of a rough ride!! Thank you for sharing that, you are one tough cookie!
I agree, I would not want Lorna taken off Herceptin yet not even for a short while, why would they have to take her off Herceptin for surgery?
You mention localised treatment to decrease the tumour load on the entire body; do you know what that could be?
We live in the UK, so we can be a few years behind the US when it comes to drug approval, however it does help tremendously to know that these new drugs are out there and it is only a matter of time before they are fully available to every woman or man in the UK that needs it.
Thank you, this site does give me hope, hope that my beautiful daughter will be able to fight and survive this horrible disease.
Much love
Yvonne

Re: Is there benefit in surgery for stage iv's
 

Yvonne I know all of these drugs are available in Ireland but not sure about the U.K??

We had herceptin too as soon as it was approved for early stage but the U.K had to fight for it sadly!

I hope this info helps Lorna:)

Re: Is there benefit in surgery for stage iv's
 

Hi Yvonne,

The daughter of one of my favorite writers has Stage 4 HER2+ breast cancer, so I follow her blog. Just a couple of days ago, she had her mastectomy, so I thought you might be interested in reading her posts on the subject of surgery:

http://gracefulwomanwarrior.com/?s=s...&submit=Search

(You'll have to start from the bottom and work your way up for the chronology to make sense.)

Re: Is there benefit in surgery for stage iv's
 

I have a very similar story as your daughter. Diagnosed 12/10 with mets to spine (multiple vertebrae) from start. 9 months of taxol/herceptin/zometa. Stopped taxol 10/11, have been on taxol and zometa since then. I have not had surgery, my surgeon monitors primary tumor closely, but there is no palpable tumor left and told me if there is any signs of enlargement that I will have mastectomy immediately. I receive my treatment at Massachusetts General hospital in Boston. I have one of the best breast surgeons in the area. I am involved in a vaccine trial at John Hopkins hospital and the oncologist there agrees with the plan. I am nervous about not getting primary tumor out and I may eventually have to but for now I feel comfortable with the plan.

Re: Is there benefit in surgery for stage iv's
 

Hello Ladies
Just letting you have an update.
We had quite a positive appointment with the doc today but unfortunately it is still a bit of a waiting game. http://www.cancerbuddiesnetwork.org/...n_rolleyes.gif
Basically the plan of action is that Lorna is to have scans done so they can see where we are at with the primary tumour, this is to happen over the next 9 weeks and in the meantime they want Lorna to continue with Herceptin and Zometa every 3 weeks and get more of this treatment under her belt before surgery is considered to remove the primary tumour. At the end of the 9 weeks the team will then decide after looking at the scans if the tumour is small enough to remove, Lorna’s surgeon will apparently decide this.
It appears that they want to remove the tumour if it’s the right thing to do for Lorna but also the timing is quite crucial. Lorna is young, healthy and only has one area at the moment where the cancer has spread so in my mind it is the right thing to do.
In the meantime Lorna feels well and looks well so let’s hope this continues!
Love
Yvonne xx

Re: Is there benefit in surgery for stage iv's
 

I was not stage 4, but I did have chemo before surgery to shrink the tumor I was off chemo for almost a month before surgery and my tumor had already grown back to50 percent of its original size. Makes sense to me for surgery. I had lumpectomy with complete axillary node dissection. I did get lymphedema, so no massages soon after surgery, I think that's how I got mine. Keep us up to date, prayers your way.