Wife due for a masectomy on thurs.
Hi folks. My name is David and I am a 3 year survivor of stage 4a head and neck cancer. In october my wife, Linda, was diagnosed with stage 1 cancer of her right breast. It was picked up by a mammogram before it got to the point where she could feel a lump (a little nod to mammograms and early detection). She had a lumpectomy in nov. with 2 nodes removed for biopsy. The surgeon said it looked to her that the margins were clear and the nodes tested negative. It turned out that the margins were not clear, there were cancer cells in surrounding tissue. Now, after an oncotype dx showed a very low likely hood of recurrance and no call for chemo and meeting with the oncologist and surgeon to discuss options, Linda has decided to go with a masctecomy, which is scheduled for this thursday. She is an RN and has worked with many cancer patients during her 35 years of nursing and knows what to expect. She is quite depressed and is getting more and more anxious as the day draws near. I must admit to some frustration at not being able to boost her spirits. When I try she usually ends up crying. I know that I had a very hard road with cancer myself but at least I managed to avoid disfiguring surgery (many of my friends on the Oral Cancer Foundation forum were not so lucky and have facial scarring and disfiguration) so while I can relate to all the fear and depression of having cancer I really haven't walked in her shoes. I'm trying to get her to join a breast cancer forum on line as the OCF forum was a huge help to me in my fight but she's really not much of an internet person. She was a terrific care giver for me and I will and am doing my best to be for her. Hopefully, I'll pick up some advice on this forum to deal with this. And, may I say, "cancer sucks."?
Comments
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David - You may indeed say "cancer sucks". Few will disagree with you on this board! I think your wife's pre-surgery anxiety is very normal...the loss of a breast is a very big deal. Just the fact that you are there for her will go a long way toward getting her through this. Best of luck to both of you!
Patty
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I am so sorryyou have to even post on this board about your wife. I too am a retired clinician and the fear is so overwhelming and so depressing. We have a great group of gals on the older women over 50 gang-we would love to have her there. Does she have to make this decision so quickly or can she wait on it and get more info. Often we caregivers are the worst patients and I saw SO much cancer that I am terrified of it-feels like a death sentence. But sounds like she has tons of hope in her case itself. Very hard to switch from caregiver in control to patient and she can always opt for reconstructive therapy if she choses. Let her cry-she has not had time to grieve over you, is my guess. I know with me, my Mom passed away (i was her hospice caregiver) and a month later I was diagnosed with cancer out of the blue!!! I am still in shock-well I move from shock to depression. Is there a support group for her?? Sometimes we think we know what to expect and that can be the worst sentence we can give ourselves!! i so hope she decides to join the BC.org Board and to find a group that she can really relate too. My best wishes to you and please tell her we are all sending her warm hugs and prayers!! SV
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david; I wish you could meet my husband Chris. You both are excellent husbands. You are both the best panacea for women facing a mastectomy. It sounds like you are sensing your wife is "turning inward"? Sometimes we nurses (I am also an RN) are better taking care of other than ourselves. Besides the fear of cancer recurrence, she (and I) are dealing with the disfigurement. As you described so empathetically.
If she is more comfortable with 1:1 then your local cancer society can provide her with a "cancer coach" matched to her situation. Please ask her to PM me if she would like to chat.
Congratulations on your 3 yrs survivorship! I am a 7 yr breast cancer survivor myself.
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David,
Husbands like you go a long way to taking the sting out of this awful disease. You sound like a WONDERFUL companion and protector to your wife. God keep you both.
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Thank you all for the welcome. I hope that I can live up to the expections. Tommorrow is the big day, hope we can get some sleep tonight. I do hope that no one was offended by my categoration of "disfiguring surgery". It's a term that comes up a lot on Oral Cancer Foundation. Kudos to all caregivers who have hung in there through this battle. I know I wasn't easy for Linda to deal with. She's afraid that, having seen too many hubands freak out and not even want to touch their wives after this surgery, that I may have some reaction like that. I certainly hope that I'm stronger than that. That's another down side to being a RN, she's seen every sort of reaction there can be. Time to go out and watch the evening news with her. I'll let you know how it goes tomorrow.
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I'll check to'ow to see how she did. Don't worry about the "disfiguring surgery" comment at all. When you are in the loop with us, you can call a spade a spade. I'd be in denial if I didn't know I had had disfiguring surgery. It's when people who know nothing about cancer make comments like they know what we are going thru. . . But that's another subject for another thread on another day. give us a "shout out" if you have any questions. I have a feeling you'll be great at "stripping drains". eileen
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Linda's surgery went very smoothly, though I was getting very concerned when it went an hour past the expected time and we had no news, but there was no problem, it just took longer is all. when she woke up, Linda was in good spirits but kept looking down in her gown at the place where her breast used to be. I suppose that's natural, kind of the way when you chip a toothe and your tongue keeps feeling that area. Well, maybe not a great comparison but all I can think of. Anyway, my mother and sister, both B.C. survivors, were there to lend support and I am well aware of how much it helps to talk to people who have been down the road before you. Tomorrow She comes home, well it's actually today now as it's 12:30 am here. I would love to say that she is now cancer free but this is a devious disease and I don't trust it at all. But it appears, and I sure do hope, that she is free of this beast and that my family has seen the last of it. I didn't even mention that my brother is a prostate cancer survivor. Enough already. And I watched the nurse empty her drain, I think I can handle that. After all we've been through the past few years, I'd better be able to handle just about anything. As Frederick Nietsche said, "He who has a why to live can deal with almost any how".
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glad to hear she did well,DAvid. At least she's looking at her bandages; I kept turning my head for a few days. But when the drains were pulled (not painful for me) the first thing I requested was that my hubby hold my hand. In some ways we feel closer than ever before; not that I'd ever say I was glad to have had cancer. Love your quote. I never heard that one before.
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Linda's home and in very good spirits, though a little peeved that I slept in this morning (couldn't sleep last night and our dog was very restless as he sleeps with us and kept getting up and roaming around the bed), and got to the hospital kind of late. But I was there on time to see the surgeon and she was very pleased with the way everything was going, And she said it's perfectly fine to use the phrase "cancer free", yippeee.
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Hey Deejer! I started reading about you & Linda today....glad I did, because now I see it's all over! Man, the waiting & wondering is brutal. I didn't have the same surgery as your wife, & when I hear about all the women who went through a mastectomy, it just gives all of us hope!
Sounds like you've been having your own problems also....My Husband had a pace-maker implanted about 8 years ago, & is doing great! In fact, just had it replaced with a newer, fancier model with headers on it..Ha! But for being in our 70's, we can't complain!
I liked your saying.....And you guys take care! Jeannette
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I'm totally lost at sea today. Linda's surgeon called last night and, after having told us she was cancer free, told us that a "sentinal node" taken during the mastectomy, had tested positive. So now she's telling us that the tumor board will discuss her case on Jan 4 and decide what to do. It could mean removal of more nodes, radiation, chemo or any combination thereof. We meet with the surgeon tomorrow and until then I really have no idea what to think of this development. As I said, I don't trust cancer one bit. Sneaky and devious monster.
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Hi there Deejer...your wife's up and down experiences reflect some of what I went through, I just wanted to add that was over ten years ago. I am wishing the best for both of you...and sending hugs from Southern Cal....
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Thinking of you both today..hugs
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deejay; sorry to hear about that recent development. cancer is not fair, that's for sure. she took care of you and now the two of you should just be enjoying life.
I would imagine that you and your wife are so foucused on her recovery from surgery that waiting for tumor board decision doesn't feel like you are wasting time. she needs a few wks just to physically recover from the mastectomy.
Just reviewed your initial post, cancer does suck. You both are in my thoughts and prayers. I do know a 93 old woman who survived 3 different cancers in her lifetime. She always says she wishes she hadn't wasted time worrying about cancer b/c she ended up living a long life. I hope the two of you have that same sentiment when you are 93!
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Thanks Lisa and Eileen. The visit with the surgeon this morning didn't really give me much more understanding about what's happening but at least she's optimistic so I'll take a cautiously optomistic view. Guess we won't really know anything until after the tumor board meeting. Meanwhile, hope we all have a very happy Christmas.
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Just found this thread tonight....glad to hear her surgery is over, but sorry to hear that a node was affected. But stage 1 sounds postive.
As for her mastectomy, I had a bilateral mastectomy with no reconstruction in January. Before my surgery, I cried and cried. I coudlnt' imagine life without breasts, even though they weren't "eye catchers"...but my loving husband of 26.5 years (at the time) assured me that my altered body shape wouldn't change his love for me. He took pictures of me (headless) the night before the surgery.
The day after my BMX, I cried and cried when I got my first look in the mirror. My husband was loving and supportive. When we got home, he assumed duty of my drains for the first few days. He helped me in the shower. He let me cry and held me.
He came with me to my doctor's appts. The first time of intimacy, I thought I was going to die, to be honest. I felt so vunerable with my new body. But he loved ME for ME
He kissed my scars. He continues to kiss my scars.
I chose not to reconstruct, and he supports me in this. It doesn't sound as if you wife is reconstructing either, and it took me a while to get used to my new body, actually. Now, though, I honestly have forgotten what i used to look like. I think if my husband hadn't been so accepting, I wouldn't be so accepting of my change.
You sound like the same kind of loving husband that I have been blessed with. 27 years of marriage with this wonderful man....I am blessed. Your wife is blessed, too...and so are you.
blessings...robin
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And here all this time I've been misspelleng "masTecomy and no body jumped on me for it. A very tolerant group of folks here.
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Hi, David ~ I'm so sorry to read about your wife's ups & downs with her dx and surgeries, but glad the mast is behind her. You know, I had a somewhat similar situation with a node that was called negative in the OR that turned out to be very positive, and, thankfully, it led me to get a second opinion. I don't know where your wife is being treated, but I personally found the expertise at UCLA far superior to the local doctors with whom I'd started my tx, and whom I'd always held in such high regard. (I live near Palm Springs.) But I can tell you from personal experience that when information starts to change and get confusing, as it is now seems it is for your wife, you may want to consider getting a second opinion at an NCI-designated cancer center. There are at least two in No. CA: http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html
If you want to take a quick peek at my bio page, it will be pretty evident why I feel this way and am suggesting it to you.
Glad you're doing well, and I hope & pray things go smoothly going forward for your wife. Deanna
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Deanna, she is being treated by the Enloe Regional Cancer Center docs who did a terrific job with me. Probably not up to UC Davis or Stanford but we have faith in them. Anyway, the possibilities now look like removing more lymph nodes and radiation. Chemo is a distant possibility. The tumor board meets next tuesday and hopefully we'll have a clearer picture after that.
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Hi David. I can relate a bit what you must be going through. My wife had a lumpectomy and radiation 4 years ago and has just finished her last chemo treatment for a recurrence in the same breast which required a mastectomy. She is a very up, positive woman, but still found the mental ups & downs rough. I felt frustrated and sort of helpless during the whole 8 month ordeal, and even though I helped in any aspect I could (cooking; cleaning; keeping her company through all the treatments and doc visits), I think the thing that helped the most were HUGS, and lots of them. The recovery time has been good and we are on our way to a new life as I am sure you and Linda will be. I still think my wife is a fantastic, beautiful, exciting women!
Good luck on what ever your decision is; I am sure you and Linda will make the right one. Just remember; HUGS.
Barry
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David; just checking to see how you both are doing. I believe your wife's appt is Jan 7?
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We saw the oncologist today. He recommends chemo followed by radiation. At least no further surgery is planned. Oncologist is a great guy and Linda knows him from years ago when she was working oncology at the hospital, knows and trusts I should say. So as soon as Linda gets that pesky tube removed (down to around 20cc's per day now so it should be soon) chemo can be scheduled. I actually started to feel nauseated today just being back at that infusion center, conditioned response, I guess.
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Linda had her 1st chemo session today with 3 more to follow over the next 12 weeks to be followed by radiation. Her spirits have lifted now that treatment has finally started. The waiting is so hard.
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glad to read an update...
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Linda's birthday is thursday. She's been feeling sick and is really down. She keeps cancelling dr's appointments because she just doesn't want to get up and go. Hopefully I'll come up with something on her b.day to help lift her spirits. 1 and 1/2 more weeks til next chemo. Even though tx has started it still feels like sitting around waiting. At least when mine started it was every day so none of that waiting around feeling. Well she didn't get very sick from the 1st dose so hopefully that's a good sign. We'll get through this.
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Half way through chemo. Linda's on a real roller coaster ride emotionally. She and her son, Michael, went out and picked out a wig. It looks really good on her. She's also happy that she gets to wear a bra now so that she looks more symetrical. Any thing to make her feel better about herself. We are all pretty exhausted from these back to back battles with cancer. Last night Linda took everything that either Michael or I said as a negative comment toward her which had all 3 of us totally frustrated and on edge. With a long road yet to go (chemo will be followed by 6 weeeks of radiation) I wonder how any of us will make it through with our sanity intact. God, I hate cancer.
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Hi deerjer,
Just stumbled on your post. Your wife is halfway through chemo, hooray. I remember feeling so happy/positive when I reached my halfway mark through chemo. It just gave me such a boost and its when I finally started to believe that I can actually get through chemo. I am two weeks out from my last chemo and I made it!
I wasn't going to post anything but I read how it seems she's taking everything you and Michael say as a negative comment. I seem to be guilty of that these past couple of days. I seem to be angry and have such a short fuse. My husband is just taking and taking it. I don't snap at people and am generally a pretty nice person and I don't know why I am snapping at my husband. I can restrain myself but don't . I think maybe it's because no matter what I say or do I know that he wont leave me. I know he's the wrong person to take my BC anger on but I have no one else or no outlet. I'm seeing a counselor tomorrow thank goodness. This too shall pass. Is there a counselor or social worker at her oncologist's office? It may benefit her avail of these service.
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So, here we are once again waiting on results of yet another scan. Linda's parathyroid was off so she was scanned on monday for possible tumor. If she has to have surgery it will postpone radiation. As is, she'll be doing radiation well into june. If it's postponed then there goes the whole summer.
Letlet, I know what you mean. I know that when I was the patient and Linda was the caregiver I was pretty miserable to deal with at times.
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Linda has an ultra sound scan scheduled for the parathyroid next monday. Friday will be her last chemo, then supposed to wait a month and begin 5 weeks of radiation, if she doesn't have to have surgery for parathyroid. And, again, we wait.
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