Spouse refuses recommended treatment

ned1559

My wife was diagnosed with DCIS and IDC. We have seen two surgeons, one local one at Sloan Kettering. Both Surgeons have recommended a Mastectomy of her right breast (Two separate positive biopsies 8cm apart).
She just turned 41 and we have 2 kids Ages 5 & 9.

She also has Multiple Sclerosis and has been on an injectible drug for 4 years.

Timeline... First biopsy May 23 Second mid June.
Second opinion at Sloan - July 11.

She refuses to talk to any counselors, friends, family.
Insists that she will not have a mastectomy.
I have her friends e-mail and call and have had her gynocologist (and confidant) call her.

She has just shut down... Insisting that she could not handle the aftermath of the procedure, she would be too depressed and believes that her MS would get worse.
I've tried the soft approach, the coach, and have now covered the what you don't want to see your kids grow up...
you don't know how the cancer will spread... etc...

Help!!!
Any suggestions??

EachDay

My heart goes out to you with this challenge. It is hard to be the spouse and support of someone going through breast cancer; it produces it's own fears and challenges. Your wife is going through something personal and frightening and as much as I know you want to help her make this decision, this is going to be her's to make and it sounds to me that she is at a point right now where she is closing in on herself and trying to protect herself. It's not that unusual. Some people want immediate surgery, immediate treatment. Some people go into a "panic" mode and shut down, hoping it will all just go away. Add that your wife is also coping with MS, she must feel totally devastated, and wondering why all these things are happening to her.

My suggestion for now is to love her, let her know you are there, try not to "nag" at her and to convince her of anything for the moment. Give her some space to think and to process this. Keep the children busy and relieve her of some of her other responsibilities so that she can process this. Pampering is good. It sounds like what you have done so far is loving and wonderful and when she is thinking more clearly she is going to love you even more for this.

Find information for yourself, read what you can and be informed to help yourself, your children and ultimately your wife. Have the information ready for when she says she would like to see it. It would be helpful if her doctor could refer her to a psychologist so that she could talk about how she is feeling with this. And should your wife remain firm in her decision to not seek treatment, you may well want to seek counselling for yourself so that you have an outlet and somewhere to discuss your concerns, fears and feelings. Support groups (such as this but also through your community) often have survivors who will answer questions and that can help your wife make necessary decisions.

The hardest part of this for you is that you cannot make these decisions and you can't force what you want. It's frustrating I'm sure. I've been through this with family over other issues, not breast cancer. I chose to have a lumpectomy and treatment because I was prepared to fight on. Your wife may realize that she wants to keep going for you and the children and will opt for a treatment plan.

One other suggestion is to read through this site and copy and print things that you think would help...not just the medical information, threads that are on the discussion board that might prove useful...from women who have been there and have experienced this. The good and the bad.

Will keep you and your wife in my prayers and hope that you find some resolution to this...both of you.

C.

iodine

Eachday has offered great information and advice. I really feel for you. It's a tought place for you to be.
Another suggestion is that you contact her MS doc and gain info re: MS and bc and their interactions. It will be helpful when your wife is ready to listen to that info.
If her doc knows any of his MS patients who had gone thru bc and who would be willing to discuss their success with your wife if and when she is ready, that may be helpful, too.
The idea of providing info per copies is a good one, and please remember to include the good and bad. Be truthful, in all things.
Come back as you wish, we'll help as much as we can.

roseg

Usually when the recommend mastectomy for multi-focal DCIS it's because the cosmetic outcome will be less desirable than a simple mastectomy.

My cousin has MS and does the injectable thing. She tires easily but she's certainly not down for the count!


Has she considered reconstruction? To get the best results with implants, which are the simplest method, it's better if you haven't been irradiated.

Maybe she could have the lumpectomies, then judge whether she'll want to live with the results before embarking on radiation. If not then maybe she'd be more hospitable to a mastectomy.

It sounds like the IDC is small, give her some time to think about this. It can't be easy to have cancer on top of MS and some time might be helpful for her.

CalGal

Hi Ned -

My heart goes out to you ... What a difficult, scary and frustrating situation. I agree with the very good suggestions already posted ...

But, a couple questions and some info:

- How did your wife handle her MS dx? Similarly to bc or not?

- Does this mean your wife is doing nothing for her bc since the May 23rd dx?!

- What is your wife "willing" to do ... chemo? rad'tn?

- Would your wife see a licensed therapist to discuss bc?

On my initial dx, I was thrilled that I didn't have to get a mast (I can totally understand that she doesn't want one) ... that I could have bi-lat lump's (as my invasive and DCIS were in different breasts), followed by rad'tn on the invasive side. SNB was all clear.

15 mos later, I was dx'd with recurr bc, mets to liver and unrelated kidney cancer. A few months later, I was not surprised to be BRCA1. While I took the "fight" position on my mets dx ... I had a very hard time with the chemo hair loss, similar to the way your wife is taking the mast news.

Desite intellectually knowing and preparing, including having a very short cut (as my hair started to fall out) in the privacy of my hairdresser's home, I reclined the seat all the way back and cried hard all the way home ... My poor DH who was driving ...

Normally I like all the curtains open and I immediately closed them and didn't want to go anywhere ... this behavior shocked and scared DH ... and while he's been supportive with everything, he got on my case about this ... I think it was the third day when I sucked it up and put on my wig and a baseball cap and went for a drive and to a favorite restaurant. While I think he could have given me more time, for me, his being on my case about it helped speed up my dealing with it.

With a mets dx, it changes everything ... Being BRCA1, I'm looking into a bi-lat mast and recon (despite some doctors telling me the "horse is out of the barn"). A fantastic book on mast & recon is:

The Breast Reconstruction Guidebook, Issues & Answers from Research to Recovery by Kathy Steligo. Even if your wife does not want to read it, you could ... At some of the bc-related meetings and conferences I've attended, there has been "show & tell" of recon efforts ... and many look unbelievably great!

By the way ned1559, I see this is your first post ... and whether Ned is your name, initials or nickname, it's a great one here ... NED = No Evidence of Disease!

Just in case you don't know, DH = Dear Husband

Best to you,

CalGal

AnnieBird55

Hi Ned,
The posts above have some good advice about this being her decision. It really is her decsion.

However, I really know where you are coming from. Guys like to fix things. It is only natural to want to feel that you have done the best thing to fix this breast cancer thing.

I had a similar diagnosis in March and I chose the bilat mast. But it was not an easy choice. One of the big things that sort of kept me from chosing mast was my husband and our intimacy.

When I look back on this time (I called it "crazy time"), I can think of a few suggestions for you that might have smoothed out my decision with my husband.

- Give her time. She is going through a lot of emotions. Be patient, let her cry, listen.
- Words of reassurance. Even if you have said it dozens of times, don't stop. Tell her you love her (with or without breasts). Say something that will re-assure her that you two will continue intimacy (albeit possibly different).
- Buy yourself the book "The Breast Cancer Husband" and let her catch you reading it.

If the decision becomes hers, she will probably fare better through the post Mastectomy time. If she feels swayed or pressured to chose mast, then she may have a tough time with second guessing.

Really, though, the best thing to do is just love her.
-Anne

starsfan

I too have MS and breast cancer. I only needed a lumpectomy. Anyone with MS can understand the fear of a
relapse, however I would like for your wife to consider that cancer spreading to other parts of her body and subsequent treatments could be more detremental to her MS than a mastectomy. I have found that exacerbations and MS flareups from temporary situations(illness, stress, surgery) seem to clear up after a short time. By no means am I telling someone else what to do, I am just saying that doing nothing does not spare her from what she is afraid of. I will keep your family in my prayers.
Linda

Kitty_Cat

Does she fear the loss of a breast or the surgery? I feared cancer so much that losing a breast didn't impact on me.

But I feared the surgery itself. My husband wanted me to have a bilateral mastectomy but I was too afraid of so much surgery. Now I wish I had done that. But the fear of two surgeries was just too overwhelming for me at that time.

Could be the surgery itself that is frightening her?

I wanted to just block it all out and hoped it would go away but thankfully I was able to come to my senses and realize that I had to act not hide.