Breast cancer mets to Uterus

[MJsHusband]

My wife just found out recently that her breast cancer has spread again to her uterus which I understand is very rare. Her oncologist said in 20 years that this is the first time he has had a patient experience this particular metastasis. I have found very little information online. Has anyone else experienced this or know of anyone else who has?
I posted this on the newcomer forum but then thought maybe this one gets read more frequently.

Thanks,
Greg


08/03/10 ~ Dx Inflammatory Breast Cancer, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/27/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx.
10/25/10 ~ Scans show liver lesion is gone.NED! :)
11/19/10 ~ Ended chemo. Continued with Herceptin-only tx every 3 weeks.
01/31/11 ~ Mastectomy
03/07/11 ~ Radiation
07/06/11 ~ Reconstructive surgery
10/10/11 ~ Annual PET/CT scan shows still NED! :)
01/20/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Initially misdiagnosed as endometrial cancer.
02/01/12 ~ Hysterectomy(all "visible" tumors removed).
02/10/12 ~ Final Herceptin treatment.
03/09/12 ~ Begain Cisplatin/Adriamycin tx for endometrial cancer.
03/20/12 ~ Tumors dx to be breast cancer metastisis, not entdometrial cancer. Back to bc tx.
04/07/12 ~ Got married in Jamaica. :)
04/10/12 ~ Began Tykerb/Xeloda tx. 5 Tykerb, 6 Xeloda. Three cycles Xeloda - two weeks on/one week off.
06/12 ~ PET/CT scans scheduled

[yanyan]

Hi, Greg. Congratulations on getting married ! I think although mets from BC to uterus is rare, it does happen. I know a lady in another support group who had mets to ovary. She had hysterectomy as well and it has been 4 or 5 years she is doing fine. I see your wifes current treatment is tykerb and xeloda- i am also on this drug, started on April 10 for local skin recurrence. I heard this drug works great for many people. Hopefully this will work for your wife as well ! I have learned to deal with cancer as a chronic diseases. Good luck !

[dawny]

I'm sorry I can't help you Greg, but welcome to the boards, I am sure more people, with more information will chime in soon. I think you are fantastic for looking for info. and advice on behalf of your wife
Best wishes
Dawn

[MJsHusband]

Thank you for the comments.

[Joan M]

I know somebody with this diagnosis and will ask about her treatment.

Are the mets HER2+. I noticed that your wife has discontinued Herceptin. I heard Cliff Hudis from Memorial Sloan Kettering say many, many times recently that Herceptin is a remarkable drug because even if a woman advances while taking a particular chemo, she still does better if she stays on Herceptin if the mets are HER2+.

Joan

[Jackie07]

Hi Greg,

Both Herceptin and Tykerb are medicine for Her2 breast cancer. Tykerb is a much smaller molecule and the pathway is somewhat different from Herceptin. That's why many long-term fighters have switched back and forth of the two drugs at different times.

The chance for a cure is much better now that the doctors know what they are dealing with.

Sending prayers and warm thoughts.

[yanyan]

Hi Greg. I think your wife's oncologist is unlikely to add herceptin back in the treatment for now as she is on a new combo tykerb and xeloda. We need to give time for the drug to work, one or two months usually. If she responds well to the new drug she will be on it as long as it works; if it does not work then it's time to consider new treatment plan including adding herceptin back in treatment. Meanwhile she will be monitored via scans and tumor marker testing. There is another drug for her2 girls that may get approved this year Pertuzumab. Also tdm1 trial has shown promising results. The battle with cancer needs patience yet we all know its a race against time. The combo your wife is on is easier than taxane and adriamycin and she won't lose her hair. I have been on it for almost 2 weeks now and have seen improvements in my skin mets. It's a great drug and I hope your wife will benefit from it as well! I am sorry the PET scan didn't pick up the tumors. How did she find out about the tumors?

[MJsHusband]

We are hoping for Tykerb/Xeloda to be effective. I hate the feeling of ever running out of options. I'm curious as to why they would try again with Herceptin later since it didn't continue to do it's job the first time. Is that because it might work better when combined with other drugs?

The tumors were discovered after I had to drive her to the emergency room due to excessive menstrual bleeding. After that incident, we were referred to a GYN surgeon who performed biopsies. They were determined to be cancer so he performed a hysterectomy. That's when they made the initial incorrect diagnosis of endometrial cancer. It was only after our oncologist reached out to an oncologist at Johns Hopkins who suggested the tumors to be tested to rule out a spread of breast cancer. Unfortunately, she lost a good bit of hair due to the Cisplatin/Adriamycin. I'm hoping it will slow down now that she is only on Tykerb/Xeloda. She really does not like losing her hair!

Thanks,
Greg

[Mandamoo]

As Herceptin is a targeted therapy it may well be that the chemo is the drug that has become ineffective (my theory - maybe the resident tech gurus will chime in here) and that still blocking the Her2 receptor is useful in trying with a different combination/chemotherapy. Lani posted a great article which shows this although questions the economics of doing so.

If you look at the Stage4 survivors thread there are many, many, many women there some 10 years down the track who have used multiple chemos with herceptin with positive effect.

I am currently on Tykerb and Xeloda and experiencing a positive response so far - no other chemo combination has reduced my mets but this one has some of them gone in 9 weeks!

Your wife has many, many options. Given that she has had the hysterectomy are the tumours now gone? Were they retested for receptor status?

I too was resistant to anthracyclines but am responding to Tykerb and xeloda - I hope that your wife does too.

[yanyan]

The science behind how each cell responds to drugs is yet an unsolved mystery because even if the majority respond to drug A, the minority may respond to drug B only or drug A+B. This explains why the same drug can tame lung mets but not liver mets. Each patient is different so we keep trying different drugs that work for us.

[Rich66]

It may be useful to think of Herceptin as a synergizer with whatever other treatment is being pursued. Over some years, there seems to be plenty of suggestion of benefit from continuation of Herceptin past "progression". Yes, a different paradigm from failed/abandoned drug concept. Plenty of patients take Herceptin along with Tykerb and Xeloda.

[YyyYyy]

I am responding at Joan request. I am not HER2 +but I do have a abnormal gene that may be causing the cancer not to follow a predictable pathway. I was originally diagnosed with bilateral breast cancer in 1997, followed by chemo and radiation and in 2001 the cancer metastasized to the cervix and is now on the walls of the vagina. I had a laproscopic hysterectomy followed by brachy therapy. I have taken several diffferent chemo pills, one being zelota and have been on an infused chemo for the past two years-navelbine, gemstar and currently taxol. Except for zelota, I have had no adverse reaction to any of the meds except some mild side effects from the taxol. To my knowledge there has been no research done on my particular cancer pathway.

Keep moving ahead.

S

[Mtngrl]

I've read at least one recent study that said that, for some reason, combining chemos that quit working with Herceptin can be effective. So drug A can fail, drug B can fail, but A, B plus Herceptin can work.

[MJsHusband]

But, in my wife's case, Herceptin failed on its own. That's all she was on when her breast cancer spread to her uterus, cervix, fallopian tubes and lymph nodes. The Taxetere, Carboplatin with Herceptin did a great job taking care of the original mets to her liver. Why wouldn't Herceptin, by itself, be able to keep her breast cancer in check? There is no chemo drug failure to blame here.

[Lani]

You are missing the concepts of both synergism and of blocking multiple pathways of escape

A +B can work even if A or B alone do not


If you have a puppy who wants to escape the house and play in the backyard, locking the front door may not be enough. As it grows up and learns more it may escape out the back door. As it grows up even more and can jump it, it may jump on top of the dresser and hop out the open window.

Just because other chemos don't work, it doesn't mean that there aren't chemos to close other open windows. and reopening the front door but closing more windows definitely is not the best way.

her2 is the front door and herceptin has proven better than lapatinib in closing that front door so side windows of the front door don't open up soon. Closing the front door and its side windows is especially good. ie tykerb+herceptin

Hope this helps

[Lani]

MJs husband:

I went to entrez pubmed via google and put in breast cancer metastasis uterus and found a handful of papers back to 2006---stopped there there may be more

These usually involved lobular or signet ring histology of the initial breast cancer (one case metaplastic, though).

Was your wife's lobular or ductal? or one of the others?

Hope this helps