What should I do?

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

My mother (52) was diagnosed with Paget's breast cancer last Thursday. The news was obviously devastating to my mother, my four siblings, my husband and me. We are still trying to process and adapt to this situation. I had actually never heard of this type of cancer before, but I've since done quite a bit of online research. Still, no matter how much I research the facts and information, knowing what to do and how to best support my mother during this difficult time isn't really something a normal website can tell me. That's why I came here. If you have ANY advice on how to make this easier for my mother I would be grateful beyond words. I feel like anything I say to her would sound cliche and I don't want my words to be empty. I want to show her that we are here for her no matter what, but I don't want her to know how incredibly scared I am. I try to stay positive as much as possible, but I'm having such a hard time focusing on the present and not worrying about the future.

I know that many of you have survived this awful disease or that you are currently battling it, so you would understand more than anyone. Are there things people say that you would rather not hear, even if their intentions are good? What is helpful, what is hurtful? Thank you so much for taking the time to read and I appreciate any response you may give.

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

Sorry, I'm new here and didn't see the "Coping and Support" forum until after I had posted here. Please feel free to move this if necessary.

Muttsmom · Posted: Thu Sep 06, 2007 12:31 pm Post subject: Re: What should I do?

Hi,

From what I remember reading about it, it has an excellent prognosis. I know one lady that was dx with it, and it hadn't even spread into any tissue and stayed in the nipple, so she had that removed and needed no other treatment.

I would write down a list of questions you have and ask the doctor, as far as any other treatment necessary, has it spread etc. In most cases, I would say, saying you're going to be fine, is something none of feel when we're dx, especially with later stage dx, but in her case, you very well be able to say that with 99.9 accuracy. I had a 50/50 chance of it coming back within 5 years, 5 1/2 years ago, so I would have loved to have heard 99 % chance that it wouldn't !!! Ask lots of questions. Everyone's dx is different and even though the internet has good sources, they clump everyone into one catagory and we're all individuals. In my case, the ACS, at that time (they have updated since) said 46% chance for me. My onco said it was better because I was hormone positive, but because I was only 43, that was against me, so their stats really only apply to the general dx, not everything else that is involved.

Just be yourself and hopefully the pathology report will be to where her doc can explain it better to lessen her worry. Remember, it's called Padget's DISEASE, not CANCER, so it's a very unaggressive kind that rarely gives anyone problems. That's a lot to be thankful for.

Let us know when you find out more.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman · Posted: Thu Sep 06, 2007 2:13 pm Post subject: Re: What should I do?

Angie, since your post is about breast cancer, it is poster in the correct location and does not need to be moved. However, just send me a PM if you really would like me to move it for you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

Thank you very VERY much for your response. I was reading http://cancerforums.net/about5111.html&highlight=pagets, another thread on this forum, about Paget's disease and from what it said, the prognosis didn't sound very good. It said five year survival rates (when a lump is present) are between 20 and 60 percent. Are these accurate figures?

Also, what are some suggestions for making her more comfortable and making this process easier? I know she will need button up shirts after the surgery, but are there other little things like that to help? She is a very independent person so I don't want to do too much, but at the same time, I want her to know that we are here and we care and are willing to help in any way possible.

My siblings and I are already planning a spa day to help her relax, but there's so much more I'd like to do.

I will keep you updated on her progress, but there isn't a lot of information since she hasn't seen a surgeon yet. We really only have the diagnosis for now, but she has a doctor's appointment today (to get a referral).

Again, thanks for your response.

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

[quote="brainman"]Angie, since your post is about breast cancer, it is poster in the correct location and does not need to be moved. However, just send me a PM if you really would like me to move it for you.[/quote]

Thanks Jim. I just didn't want to be breaking the rules.

Muttsmom · Posted: Thu Sep 06, 2007 2:36 pm Post subject: Re: What should I do?

It said five year survival rates (when a lump is present) are between 20 and 60 percent. Are these accurate figures?

I'm no expert on Pagets, but I find that hard to believe that they are accurate numbers. I had Stage III, with a large tumor and 9 lymph nodes that were cancerous also and only 43. My survival rate was about 50/50. When they talk about survival rate, it's survival rate without a recurrence in 5 years, not if someone will be alive or not. Of course, none of us want a reccurence, so it's scary, but it does get easier with the more time that passes.

Here's a site that I have found to be one of the best and accurate. It said most of the time, Paget's is not invasive and contained in the nipple with an excellent prognosis. If it has spread, then more aggressive treatment would be necessary, but still sounds like there is every reason to believe that she'll be around for many, many years Smile

http://www.imaginis.com/breasthealth/pagets_disease.asp

A day at the spa sounds like an awesome gift and one I know she'll enjoy (you can mail my certificate......LOL). I would let her bring up the subject and be there to listen, but if she doesn't bring it up, try to keep things as normal as possible. Chances are excellent that she's going to do great and not have to deal with this ever again!!! There is a paget's disease of the bone, and that's a whole different disease, but have the same name. I've never looked into that and possibly that is what the article was referring to?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

That is wonderful news. Thank you so much Nancy! You have really brightened my whole day (more than you could ever know)! Still scary, but I have much more hope now. I will keep you updated as we find out more information.

Muttsmom · Posted: Thu Sep 06, 2007 11:17 pm Post subject: Re: What should I do?

You're very welcome Angie. That's what we're here for to try and help if we can. It's only normal to be scared. We have to keep fighting to find a cure for this crappy disease.

I started noticing the BC items are out in the stores ready for next month. I'm a huge Nascar fan and for the month of Oct., the drivers and their crews donate lots of money to research and even have cars with BC paint themes. We have a lot of people helping and hopefully one day we'll be able to talk about everything except cancer, because they will have found the cure.......... what a great day that will be !!!!! Smile

_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

[quote="Muttsmom"]what a great day that will be !!!!! Smile

[/quote]

I agree completely! Until Mom was diagnosed, I had no idea how many of my friends have had to go through this same thing in their own families. We will all rejoice someday when this can't hurt us anymore...

In other news, Mom had an appointment yesterday and the doctor was very hopeful. He said that she *might* not have to go through chemo treatments, that hormone therapy may be sufficient. Now he is just a general doctor and not a surgeon or oncologist, so he said not to get our hopes up, but that it is a possibility. Her next appointment is on Thursday. She will meet with the surgeon and also get a biopsy. I'll let you know how that goes.

Again, thanks for all of your support. This is a wonderful site!

Muttsmom · Posted: Fri Sep 07, 2007 11:58 am Post subject: Re: What should I do?

Who dx her if she hasn't had a biopsy yet?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

It was a general MD who diagnosed her. He said he is 99% sure.

Muttsmom · Posted: Fri Sep 07, 2007 1:14 pm Post subject: Re: What should I do?

I was told mine was a cyst and it ended up being Stage III Breast Cancer. I know it's still scary and I know you're worried, but I sure would keep busy and your mind on other things since you don't know. I had my family doc and the surgeon, before he did the biopsy, tell me it was a cyst. So, only a biopsy can tell for sure, and not a needle biopsy..... they aren't reliable.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

AngieDoogles · Regular Joined: 06 Sep 2007 Posts: 12 Location: TN

Thanks Nancy! We will know for sure on Thursday after the biopsy. I think the reason they are so confident is because of the Paget's. The symptoms are different than with most other kinds due to the rash and bleeding. I wasn't there though, my mother is very independent and didn't even tell us she was going to the doctor at first, so I only know what she has told me and not direct information from the Dr.

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