My wife is having bilateral mastectomy - How do I really Help!
My wife Michelle (o2bhealthy) is having a bilateral mastectomy on June 23rd. I so much need to be there for her so she does not need extra things on her plate. I am trying to keep up with her on all of these terms. She has DCIS and IDC Stage 0-1 with HER2+. The original biopsy was screwed up at the hospital, so the four samples taken from her right breast was not tested individually, so we are not sure if just one lump was positive or all of them. Needless to say based on the results my wife wants a bilateral since she is fearful of a potential reoccurance on her other breast. I stand by her side 100% in this decision. She also is going to have reconstruction done silmulateously; over several months with the spacing implants. So, what I know is that she will be going through 4 treatments of TC chemo and Herceptin every week for a year followed by TC Chemo every three weeks. She also will have to take Tamoxifen for a 5 year period. Ultimately this will chemically induce menopause not the least of which she will loose her hair. I know this sounds shallow, but I don't care about her breasts being gone if it means she will come out of this healthy, I know the FOBS, as she calls them, will not be the same as what GOD gave her. She is very proud of her breasts, I can see why, but I have come to the realization that nothing I could possibly say will reassure her. What advise can you give me to best help my wife, what possible help can I be for her?
Comments
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Hi Martin,
I'm truly sorry about your wife's condition and am sure things will work out. As you will have read on this forum the stage you are at is by far the most difficult because of all the uncertainties. But it looks like some some decisions have already been made and that is a good sign.
My wife has just yesterday had her BMx surgery and I am posting this from her room. When she received her second diagnosis which was early stage we jumped at getting the cancer out so she had a lumpectomy a few days after diagnosis. The idea was it would be followed by radiation like the first time around. But as we began researching (mainly me) and given the scare with the second primary occurrence my wife decided she wanted BMx. We still did a lot of research got second, third and fourth opinions all who said that lumpx + radx were adequate. Yet we went with BMx - this was her decision and only she could make it. Once this was decided our research focused on what was the best way to do the BMx and where (we do not live in the US). There are many different approaches and ways both to do the BMx and the reconstruction can be done.
I guess what I am trying to say in a roundabout way is all you can do is learn as much about this illness as you can through research almost to a point where you know more than your wife. She will be making decisions and your research and knowledge should be there to support those decisions. If something she wants to do contradicts what you have read then you can tell her why you think the approach should be different. You just need to be there for her - I think that is all our lovely wives want from us - that we are there for them, care about them and understand what they are going through. I told my wife early on that this condition may be in her body but that it is really something that affects both of us - she is not going to be going through this alone. I have been to every single appointment with every doctor with her just so that I can also help with he decision making because our wives are understandably freaked out by the diagnosis. We just need to be there for continued reassurance and support.
I hope this helps and I wish your wife, you and your family all the best!
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nim88,
Let me begin by telling you too that I am sorry to hear of your family's ordeals. You are in our prayers. We are in Arizona and found two astounding surgeons in Scottsdale. The Breast Surgeon specializes in doing just breast cancer surgeries while the Plastic Surgeon is rated as one of the best, if not the best in Arizona. I know God's hand is in this with all the positive events over the last month of two. My wife was laid off before her DX due to theeconomy, so if she had a job she may not have been so concerned about the lump she found and may have not had the time to schedule appointments. All tests and scheduling really went like clock work. After our initial appointments with the surgeons she was offered a job in the insurance industry, which is what she enjoys. She went in and told her of her DX and recovery time needed, she still got the job and her employer will work around her surgery and treatments. I am constantly reminded on how amazing the human spirit is. I really appreciate your words of encouragement, God Bless!
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Martin- I am sorry that you even have to be here to post but you have come to a good place. Now that you have a plan you can move forward. I understand the fear of the unknowns.
I had a bi-lat in June of 08. Did not have recon work so that will lengthen the recovery time a little. Even when you know in your heart that the bi-lat is the thing to do there is still the shock and maybe a little anger at what it looks like when you first take the bandages off. Be there to listen or hug her when that comes. I am VERY independent so here's my take on some things too. You cannot lift your arms too high in the beginning...think ahead and if there are some things in the kitchen that she uses alot that are higher, you may want to find a lower place to put them so she can "do it herself" kind of check out the house and see what needs to be moved. I needed help in the beginning with little things like turning on the shower, lifting a tea pitcher, getting all the pillows arranged to rest.....just little stuff. Just be there for support. It is a time of adjustment as you learn what you can't do right away. Button down clothing is key.We also got a lanyard (the ind that holds id's ect) to hold the drains while i was in the shower. There were some bumpy days in the beginning as I adjusted to the new me...there will be those days...can we say thank you for GRACE...LOL
The Lord has seen you through this far and as you have indicated, he worked the timing out, provided the job and he will see you through ALL things. My hubby also went to all the appts in the beginning, was there for all but one of the chemos and we enlisted a small army of buddies to help with the daily rides to rads appointments as i had to drive an hour to get there.
This DX does effect you both and people often forget to support the spouse as much as the survivor. You show great compassion reaching out here to see what you can do. Be her advocate- while i have some medical knowledge during txs I was foggy and he had to be my ears. He asked questions that i was not thinking of and was able to tell the doctors how he saw my progress as well as how I saw things. I wish you two the best,and know that the Lord will be with you as you walk this together.
Take care-
Lisa
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I had a bilat last year without reconstruction. My surgeon wants me to wait two years to ensure there is no recurrence first.
I was very upset about the mast before it occurred but surprisingly (to me) okay with it after. What helped me tremendously was my husband's reaction to it. I worried that he would find me less attractive but that wasn't the case. His acceptance of my new look has meant the world to me.
Good luck to you and your wife. I'm sure you'll do fine. The fact that you're here shows how supportive you are of your wife.
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Martin, just hold her. Don't tell her it doesn't matter, or that it will all be fine or to be postive. Hold her and tell her you love her.
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Hi Martin, I have e-met your wife and talked to her on the phone....i live in phx...chandler I am sorry you have to go through this.....but..... i found i am stronger than i thought i was...and believe it or not, blessings can come from all of this!!!! Just keep doing what your doing.....educating yourself on her type of bc, chemo, the reconstruction process, etc...and let her know you love her...we can never hear that enough!!! She will have an adjustment period and everyone is different on how long it lasts....my bilat mx was in oct 08....i thought i had adjusted to it all and then started dreaming about regaining feeling in my breasts, i woke up in tears and was very depressed for several days....it just came out of no where. so just hold her.
in retrospect, it all happened so fast, and no-one told me about how much feeling you lose and the possible nerve damage that can happen. all i could think about was getting the cancer out... i think she will do great with such a supportive husband. and strong faith!...
congrats on your upcoming baptism....that is awesome
we are hoping she can come to our bc support group luncheon this saturday....but if not, i will visit in the hospital.
God bless you both, karen
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I am a man and this is how I think. So, here is what I know:
- Nobody really knows what the future will hold.
- I will love my wife and children every moment of every day.
- I have faults; I am constantly striving to better myself and correct these faults.
- My wife has faults (duck)!
- My weaknesses and her strengths, and vise versa, make us a perfect team!
- I am not going anywhere, ever!
- I will not hover, however, I will be there in a moments notice when she needs me.
- I am working on my communication skills with my wife.
- Praise God!
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I just had my bilat mx 3/26 and found a number of practical things my husband did very helpful. The most important was just holding me while I cried and grieved for the breasts I was to lose.
The first few days after surgery I had trouble sitting up to get out of bed, so he slide his hand behind my back about mid chest and gently pushed me up.
We slept in separate beds to eliminate the joggling effect and increase quality sleep but that had him in a different room so I would call him on his cell at night to help me up. He insisted I not get up alone at night for about a week and a half which was very reassuring since I was using a lot of pain meds.
He did a great job of running interference with calls and visitors, keeping family members updated and generally protecting me when I felt tired or vulnerable. I was really tired for about a week and slept a lot.
He made sure the stool softener was handy.
He washed my hair while I leaned over the edge of the bathtub and helped me wash the rest of my body. That felt so good since I couldn't shower until the drains were out.
He made sure the foods I liked were in the fridge and anything I expressed a desire for he promptly made. He is a great cook and one way he expresses nurturing.
We no longer have kids at home but he made sure our grandkids had all the reassurance they needed.
He took the "before" pictures so I can look back at them and remember what my breasts looked like. Kind of surprising to me now is that the pictures also help me remember how they felt. Harder for him to do was take the "after" pictures: every week for the first two months we did a full series: frontal, sides and back to track the changes and improvement. It helps me to see that I am getting better pretty quickly when I start to wonder if I'm ever going to be normal again.
He is not afraid to touch me but is so very gentle, to avoid hurting that very sensitive tissue. He lets me know he still likes my body no matter what the changes.
He still accompanies me to each and every medical visit, still asks questions and essentially is my parade!!
He proudly walks beside me, holding my hand as we start doing the ordinary social things and is not embarrassed that I have chosen to go flat.
There probably are a million little things he did that I didn't recognise at the time but knowing he is there for me through thick and thin is vital every day.
I was fortunate enough not to need chemo but I understand losing all her hair will be traumatic. Be prepared as there is a lot of help to deal with this piece.
I am so sorry that any of us have to go throught this and I wish only good things for both of you.
This site is wonderfully supportive and has sooo much information. Good luck -
It's so wonderful that you are being so supportive! We need you to be! My husband was there every minute I needed him to be. I slept in the recliner the first week since it hurt too much to lay flat. He slept on the floor the first night so he would be able to help during the night if I needed to be up. And he came home for lunch the first 3-4 days - a 20 minute drive each way, plus bringing lunch home to eat with me so I wouldn't be alone all day! And, he was willing to rub my back at night once I was able to sleep in bed - even though he was tired and it has never been something he usually did before my surgery! And, he sent flowers as a surprise, also something he rarely does due to the expense of a florest delivery. And he has told me repeatedly that he loves me, it doesn't matter that I no longer have one breast, it's better to have the cancer removed!
So, listen if she wants to talk, be there for her, and know that each path is a little different, but your love and support will make all the difference! God bless you both, and may His strength support both of you during the weeks ahead!
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We are now a week away from her surgery and I am running scenarios through my mind. I feel confident but realize there will be times when there will be difficult moments ahead. I appreciate the words of wisdom from everybody. You are really amazing to have gone through this and still have the time to help others through this.
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Martin, Just wanted to say good luck next week......I also had a bilat mast with immediate TRAM reconstruction.......In case you are not familiar with this surgery this is where the surgeon takes your lower ab muscles plus the fat and forms new breasts where the old ones were....Of course the breast surgeon has to do a skin sparing mastectomy first......i was lucky too in that my husband helped me a lot through all this too...He told me repeatedly he married me not my breasts.....He loves me just the way I am.......
Your wife will definietly have days of depression and sorrow.....THis is normal mourning for what she has lost......We all go through this grieving period and it varies as to how long this lasts......For me it lasted over a year but then again I grieve deeply and I also was grieving for a sister whom I lost to bc and another sister who had just been diagnosed 5 months before me.....So I literally had a full plate!......I hope your beautiful wife does not have a full plate like mine.....One thing for sure, God made me stronger than I have ever been because of this experience...I truly believe God was right there with me and the surgeons in the OR and with all the nurses and hospital staff afterwards.......
Please keep us updated and let her know she is in our prayers...Please PM me your addy so I can send her cards of encouragement...Those always help........
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Martin,
Just thinking of you and your wife today and hoping all goes well and over the next several weeks. I know all the reading and resarch about what to do gets mixed with instinct.
I found these posts in my blog from the day of and the day after my wife's double mastectomy in case any of the medications and procedures sound different from the instructions you get:
http://route53.wordpress.com/page/13/
Erik (Route53)
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Martin has been posting updates in the June Surgery thread. She was still in surgery with PS last he updated, nodes neg., that was an hour or so ago.
Dawn
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Hope the surgery has gone well.
I can think of a few things that wish my husband had thought of. All silly little things that would have meant so much to me. I wish he had tried to get me a better hospital room situation when he witnessed how difficult my roommate was. When I needed help up out of bed, I wish he had known to help by supporting my back rather than grabbing my arm. I wish he had asked for easy open medicine bottles. I wish he always remembered to switch the shower head back to the handheld since I couldn't reach it myself (after he left for work). I wish he had tried to help more when his mother was visiting to help. I wish he had thought to pick up a meal on his way home from work once in a while. I wish he hadn't tried to put certain things away (and out of my reach). Now don't get me wrong, my husband has been my most wonderful support and did the things he thought were helpful. I just wanted him to read my mind
. I know this is very hard on the husbands too, having to answer all the phone calls and such right after the surgery. It can be very frustrating and draining. Try to handle that aspect of it as quickly and easily as possible, maybe even with a general email to all who may ask, let them know you will be spending time with your wife and will speak to them when things settle a little more. You sound so "in tune" just by the fact that you are here asking us. You seem like a great guy, just be there for her and know that she may be in more physical or emotional pain than she is letting on. -
You sound like an awesome husband, Martin. I think just being there and doing the things she's not able to will mean so much to her. I had a bilateral a year ago, and I remember my boyfriend putting his hand on my back and helping me to sit up when I wanted to get out of bed. Then when I went back to work, I would come home and find the dishes all washed.
I don't know if there's anything you're going to be able to say that will reassure your wife about her about losing her breasts. I think your acceptance and appreciation of her new breasts will make a difference over time. You could also offer to take pictures of her as she is now - artful pictures. I saw that in a movie and wished I would have thought of it because by boyfriend is quite a photographer.
I wasn't that bothered by losing my breasts; I was more concerned with regaining my health. But if it were my issue, I would want my partner to listen to my concerns and try to understand how I felt instead of just trying to talk me out of it.
I wish you both the best.
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OB2HEALTHY UPDATE! Sorry, too many threads to keep up with. Michelle is comfortably resting after a highly successful bilat with NO NODE INVOLVEMENT, PRAISE GOD! She is doing remarkable, even the nurses I have spoken with away from her are praising her for her to this point. I cannot help but to be thankful for everyone's support and very important words of wisdom. The plan is that the surgeon will be by tomorrow morning to see how she is doing and then determine when to release her for our two hour journey home.
I have to admit at first I was one of those husbands saying "I don't need to post on a forum for help", how wrong I was; EVERYBODY here is awesome and I can only hope that I can help other men with encouragement for their wives. This is truely inspriational to our family and has helped me cope in many ways. God Bless and thank you all!
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Martin,
Glad to hear all is well.
Take care over the next couple of weeks as they will be pretty hard as she recovers and gets her sea legs back. Importantly for you too, make sure to get your rest. Physically your body may be okay, but don't get mentally exhausted.
Erik (Route53)
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She is chewing my head off for overdoing it. I have a "Giterdone" menatlity that I need to punch in the nose as I need to have the strength to help her. I had a wonderful friend come over and help pull weeds so Michelle has more of a back yard to walk around in. She is out with her mother getting her hair washed at a local solon (sp?), so a little pampering for my sweet wife. I hope I am taking care of all her needs, I seem to think so and I have no bruises yet, so I guess I am doing fine. Keeping up on her med schedule, and drain monitoring is going fine. I have learned that scratching her back is a real nice treat for her, so she is getting that on a regular basis. Also, it is really helpful to help her get out of bed by gently pushing her up from her back and NOT by pulling her up by her arms. She is being wonderful with her stretching exercises and her breathing (inhale) gizmo. All in all it is an experience that has drawn us closer. I see her needs so much more now and we almost have created a non-verbal communication where I know what she needs and that just makes me feel so good to know I can read her cues.
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so glad that she is doing well and that the surgery went well. You sound like an awesome helpmate and husband for her. I know she is glad to have you there to help her through this.
i am glad that you found the wonderful support that so many of us found in the early days of our diagnosis and surgery. I hope that her recovery continues to go smoothly.
Take care of BOTH of you
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Martin,
I hope all is going well for your wife and you following her surgery.
Love her, hold her, tell her how beautiful she is and how much you love her every day.
Let her take as long as she needs to heal, physically and emotionally. Let her talk about it as much as she needs. My partner was very supportive, but the one "mistake" he made was setting a time limit (in his own mind) of how long it would take for me to feel better. He accepted me physically, but seems to think I'm just wanting to "dwell on it" when I sometimes still want to talk about my mastectomy 18 months later. SO, don't set any time limits.
Lots of good thoughts to you both.
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