Feeling confused & Sad today
 

new to this support page, this is my 1st post....

My mom was diagnosed on 6/9/09 - stage 4 (b/c the tumors are so large); HER2 + not sure of the other technical data, but we are always told that it is "locally aggressive."

In June via the Pet scan we found that it had not spread anywhere else- no lymph node involvement, etc either. But then in August it spread from the left to rt breast so is now considered "metastatic." Dr says there is no need to do any further CAT or PET scans at this time b/c even if it has spread, they would be treating it the same way.....

She has a port and is doing Herceptin every 3wks; was doing 2 other chemo drugs via the port but those quit working in Aug when it spread and now she is on Xeloda - on 7 days, off 7 days, that seems to have stopped it spreading so far; the info I have read on Xeloda online says it "delays progression for avg of 8.9 months," so that is scary too.. what happens after the 8 months????

Today, mom says she is itching again and had pain shooting through left breast - has not happened since June, so I am not thinking that is a good sign. Trying to stay positive but feeling sad. would really like some support and to connect/talk to someone who has been through this and is doing well! My mom's is rare too b/c it is on the OUTSIDE - looks like cauliflower and the tumors are large - anywhere from raisin size, to grape size, to golf ball sized. Dr. says they cannot be cut off at this point either.

any feedback is welcome, really would like someone to talk to...

Re: Feeling confused & Sad today
 

OK, 3rd try on responding here on my quirky laptop!

Sorry you are here, but glad you found us. This is a scary time I know, but you and your mom are not alone. There are many here who are doing well and will be with you, ready to offer whatever help they can give.

It would be helpful if you can find out and post some more of the details - this would help us better understand and offer feedback or suggestions. Or questions.

Based on what you posted, I have a few questions and comments anyway:)
1. Has your mom been to get a second opinion? Given the unusual nature of her situation, I'd want to have the best breast cancer minds on the case. You didn't say where you are located, but I would suggest getting an opinion from a breast cancer specialist at a major cancer center.
2. How do they know the cancer in the other breast is metastatic spread vs. a second cancer? It's unusual but does happen.
3. I'm wondering why, if there is no cancer anywhere but "breasts", it would be inoperable surgically? There is a growing body of evidence that even with metastatic disease, breast surgery may improve survival. I also would ask why no further scans would be done - you really do want to know what you're dealing with - cancer in the other breast is one thing, cancer in a vital organ is another. I believe you need to know what you're up against. Although your mom's oncologist is right - it may not make a difference in treatment choice at this time.
4. OK, maybe this should have been first...Your question about the Xeloda statistics and "what happens after 8 months?". All these stats are just statistics and do not necessarily reflect what will happen for any given individual.


The average given is the MEDIAN - meaning half are below and half are above that average. People who do not respond AT ALL may be included in the stat, as well as people who respond for years.
It always just depends on how the individual responds to a given treatment. So if your mom responds to Xeloda, it may work well and for a long time. If she does not respond, there are still other agents that could work well for her.

Do not lose heart.

Chris

Re: Feeling confused & Sad today
 

I am sorry to read about your Mom. Please tell her to hang in there and keep going.

Re: Feeling confused & Sad today
 

Very sorry about your mom. You might want to purchase a book like Dr. Susan Love's Breast book to use as a reference book as you try and learn more details. Suggest that someone go to the appointments with your mom and ask lots of questions and write down the answers. Keep asking for treatment options. I am just jotting down a few ideas that may help. Very sorry that you and your family are going through this. Please try and stay hopeful and look for answers that will help.

All the best,
Catherine

Re: Feeling confused & Sad today.. but happy for replies
 

thanks for the responses... just knowing other are our there and will talk is great!

My mom's specific type of BC is called "mucinous carcinoma" and like I said it on the OUTSIDE so it is visible to her - which is good and bad, she can physically see the meds working on the tumors but then can also see when new growths appear.

In answer to one of the earlier posts: mom has no insurance (and no job) so we are going through a wonderful place called "gateway to hope" and they are paying for all of her medical treatments through donations and other charitable organizations... they have truely been a godsend!
I suppose that is why we have been reluctant to try and go see another oncologist - b/c everything is "set up" through Gateway to Hope, hope that makes sense. We did see my regular physician (mom did not have one), a breast surgeon, and now 2 oncologists in the same practice where she is going... based on her initial biopsy (on the left breast) it is BC and mom could visually see the tumors spreading from the left to rt breast b/c it is on her skin... maybe that is why they did not re-biopsy the rt breast.

I will try to get some more statistics from mom or maybe a copy of her medical diagnosis so I can post that too!

Told her to call her Dr. today to report the few new bumps, pain and itching she is experiencing...she is very reluctant to do so b/c is afraid they will take her off the Xeloda which seems to be working well on the old tumors - the ones from June are all dried up and have turned whitish/gray.

Re: Feeling confused & Sad today
 

was trying to reply to Christy: we are in St. Louis