Breast cancer - what now?

August 11, 2008 12:50 PM

My wife has breast cancer. What do we need to know?

My wife found a lump and then, within a few days, another lump. A biopsy has confirmed that it's cancer and it is at least stage 2 because it has reached the lymph nodes. She will be starting chemotherapy soon with surgery to follow. We have a lot of confidence in her doctors but could use suggestions on how to deal with the day-to-day stuff.

Other stuff that might be relevant: We have two children, both teenagers. Family is not close enough to help. My wife does not have many close friends. She is likely to be on disability for awhile so finances will be an issue.

posted by anonymous to health & fitness (13 comments total)

Check with her Dr about geting plugged into your local cancer support group ASAP. They can help you address these issues and are a very caring bunch. I wish the best for you and your family during this rough time.
posted by pearlybob at 1:06 PM on August 11, 2008

I'm so sorry, anonymous.

I don't have any specific tips, but you might find this book helpful.
posted by cider at 1:26 PM on August 11, 2008

I had a bilateral mastectomy a couple months ago after an early-stage cancer diagnosis, and can share my (still early) thoughts on dealing with breast cancer:

At the beginning, everything moves VERY fast. Detection, diagnosis, choosing treatment, surgery flew past really fast, before I'd even begun to emotionally process any of it and then everything switched into slow motion after surgery. Feeling better took forever and that was very hard to accept when everything else had been taken care of so quickly.

Get help wherever you can. I had my mom to take care of me, and that made it livable. I don't go to church, but met a couple times with a pastor from my childhood church and that helped. The local support group freaked me out because everyone was in much worse shape than me, but that's just me. Do what helps, don't feel obligated to do what everyone else did.

When I thought I should have been feeling better but wasn't, antidepressants got me through the hardest part. Had never been on them before, VERY glad I gave it a shot. Ditto for Ambien CR (I was too anxiety-ridden to stay asleep on regular Ambien -- CR did the trick).

Talk to others about what kinds of cancer treatment they chose. Every person is different and feels different about what they went through and what was the "right" choice, but hearing why other women chose, for example, to chose a certain type of reconstruction made me feel like I was better prepared to make my own choices.

Young Survival Coalition's bulletin board can help you get answers for any question you might have. Technical details. Advice on emotional recovery. "After" photos. Advice on getting back in shape after treatment. That site is a lifesaver.

And as for finances, there are some grants to help pay for treatment. Doctors or support groups should be able to give you details.

And you're welcome to contact me with any questions. Good luck.
posted by katieinshoes at 1:30 PM on August 11, 2008 [2 favorites has favorites]

My sympathies, Anon and wife! Been there, done that, got the pink T-shirt and lost the hair.

I found the BreastCancer.org website and forums to be an absolute lifeline. I never did go to an in-person support group (life was too hectic) but their boards are a virtual support group.

The American Cancer Society is one of the best places to contact right now. They offer things like free wigs and head coverings for people undergoing chemo (my wig was great - no-one could tell it was a wig!), phone counseling, referrals, you name it.

Chemo is tough, but it is do-able. I kept going to school for my MA throughout my chemo treatments. They loaded me up with so many medications that I wasn't throwing up or sleeping all day, though I did have a sensitive stomach and tired out easily. I got a housecleaning service to come in every other week when I was in treatment, and stocked up on frozen meals.

Breast cancer treatment is very individual - some women who have "hormone-positive" cancer get Tamoxifen or Femara, those who are "HER2-neu" positive get Arimidex, and so on. Your wife will get a treatment regimen tailored to her and what kind of cancer she has.

I'm spiritual-but-not-religious and a regular meditation/contemplation practice helped me a lot. Also, I saw a therapist for a few sessions and she was a godsend.

Finally, remember, there IS life after cancer. Right now you are feeling overwhelmed and terrified. Once your wife is being treated, the sense that you are doing something about the cancer will make you feel better.

I'm a year and a half out now, and I feel great and have hair and everything. Please PM or email me if you want to talk.
posted by Rosie M. Banks at 1:51 PM on August 11, 2008

Realize there may be people around you (friends, family) who assume this is a death sentence and act as if your wife is dead or almost dead. This happened to my mom; several people fell to talking about her in the past tense, and even her sister refused to participate in some activities meant to cheer my mom up because, in her words, "you're just pretending she's not going to die!" Yes everyone processes things differently, but realize that some of your "job" may be protecting your wife, and yourself, from these sentiments.

Also, make sure that you and the kids get enough non-cancer time. Time where you're not caring for your wife (I mean that in a hands on way--that you get a break), time when you're not fielding questions about her health, time where you're not reading up on stuff. This is really (IMO) a blind spot in treating cancer, that the entire family is traumatized. Make sure you take care of yourselves in addition to caring for your wife.

One thing my mom has mentioned several times was having one doctor who acted as a leader of the team treating her, and trusting that doctor. She saw a lot of doctors, especially at the beginning as Rosie M. Banks describes, and being able to depend on one of them to coordinate and decipher the various threads was helpful. Good luck!

(By the way, my mom is 11 years post diagnosis now.)
posted by cocoagirl at 2:09 PM on August 11, 2008 [1 favorite has favorites]

My advice would be to keep yourselves from withdrawing from life. If she's tired and physically exhausted, don't make her feel bad about not wanting to visit Disneyland and be happy and enthusiastic. But take her out on picnics, make dinner for her and some of her friends and family, plant flowers together. Interact with people and nature. Be positive, but listen and empathize. Don't try to cheer her up by being overly positive. Just be sensitive, patient, calming, and steadfast.
posted by HotPatatta at 2:35 PM on August 11, 2008

My wife has had two tumors surgically removed, both benign, and is going in to have another lump checked out tomorrow. I get so afraid, but the way I process is to research... research treatments, information, medical journals. Having some understanding of what's going on while sitting in the waiting room makes it slightly less terrifying. Best wishes.
posted by letitrain at 4:14 PM on August 11, 2008

Sorry I can't answer your questions, Anon, but I've had three friends (all childless) go through this in the past year and all three came out the other end of the surgery/chemo/radiation process healthy and happy. I wish the same for your wife.
posted by booth at 5:24 PM on August 11, 2008

aww dear anonymous, my loving hugs to you and your wife in dealing with this.

I wrote a couple of comments and posts in MetaFilter dealing with the cancer issue that might be of practical help to both you and your wife:

She is going to need you to research what you can, to do practical stuff that will make her life easier during the treatment process and for about 3 months after the chemo. She will likely be so scared she may shut down in shock.

One person gave me what was the most important advice for getting through chemo:

Look for the treasure in each day.

That treasure may be watching the cardinals, junkos and chipmunks eat the birdseed I put out for them. It may be receiving a card from my dentist, who expressed that he cared. It may be a foot massage from a friend.

This one, when I had just been through chemo.

This one highlighting the book, Help Me Live: 20 Things People With Cancer Want You to Know.

Hemi-Sync Chemotherapy Companion CD

If your wife has longish hair, she might consider shaving her head prior to chemo and giving her hair to Locks of Love, to make wigs for financially disadvantaged kids who have lost their hair to illness.

Free and excellent telephone therapy from people with specific experience. An *excellent* resource: Cancer Hope Net.

Del.icio.us cancer links.

Center for Patient Partnerships

Some blunt advice. Chemo takes the human body close to death because it is killing the cancer. The misery of chemo, the loss of one's hair for example, is an expression that chemo is working, it's doing its job. It requires bravery to survive and some emotional fierceness, fortitude. Depending on the dose, one's age, health, constitution, one's body, the type and stage of the cancer one may feel like one is dying. And this is part of the treatment. Better to know that in advance. Best day to start chemo is a Monday or Tuesday because the side effects take a few days to kick in. Don't start chemo on a Friday because there may be a medical emergency and the doctors will be off on the weekend.

Chemo destroys one's nerves to some degree. All nerves: hearing, taste, eyesight, touch, smell. This is mostly temporary. One's digestive system is damaged. It helps to have soothing, cold food, like cans of mandarin oranges. Ginger helps with nausea. Walking is helpful.

The chemo has a pattern. Like the following pattern. Your wife's chemo may have a different pattern but this is a general idea from my own experience. It usually takes 3 days to kick in. The third day is bad, the 4th worse, the 5th worse. The 6th slightly better, the 7th slightly better. A gradual improvement until the next chemo wallop, which is worse than the first round. The third round is worse than the second but by now one knows the routine and it may be less scary. The 4th round may feel like too much and depression may set in, suicidal depression. The fifth round is the almost last round, so there is a feeling of it will be over soon. The sixth round is the last and there is a feeling of triumph.

Anyway, hope there is something there to help you and your wife.

Love to you both, my encouragement to you as her caretaker (how fortunate and wonderful she is to have you there, helping her!) and sincere wishes for her recovery.
posted by nickyskye at 7:54 PM on August 11, 2008 [2 favorites has favorites]

Looking into social services, talk to the social worker now, there are likely a lot of things you can apply for that you didn't know were possible (eliectric bills paid for a month, etc..). The hospital will have one.

You will likely want to up your cell phone minutes, my mom get was able to head off a shocker of a bill the first couple of months by thinking to get call the phone company and get on a better minute plan.

If hospitalization is required, and the hospital is far away, looking into getting a sublet or dorm room for you to be close. $150/night hotel rooms eat up cash quickly. If you are in a hotel, ask for the hospital rate if possible.

Hospitals on the weekends can be tough since they are so short staffed, if it good to be around to watch out for things then.

Good luck.
posted by bottlebrushtree at 8:07 PM on August 11, 2008

From my wife:

My mom had her first bout of breast cancer when I was in high school; the second when I was in college. She's been in remission for over a decade, and I dearly hope your kids can say the same about their mom in a few years. I don't see much emphasis on supporting your kids through this time, and that's something to look at, too. Cancer forces kids to face their parents' mortality, and is something that isn't easy to talk about with friends. I remember that my brother and I felt a lot of fear and loneliness. As the older sibling, I felt like I had to be strong so as not to scare my brother, or worry my parents who were so worried themselves. So, I really needed to talk about this stuff, but couldn't open up to them. Helping your kids find other adults (for me, a motherly teacher filled that role) could be really helpful.

If either (or both) of your children are daughters, they will probably need special support; breast cancer hits daughters incredibly hard. I was sure that I, too, would have breast cancer and require a mastectomy, chemo, etc. Again, I didn't talk about this, trying to protect my parents, just internalized it. I know teenagers, on the whole, aren't great about communicating, but do your best to help them talk to you, their mom, and others about their fears and grief (regardless of the outcome, the grief is there).

Finally, it's reasonable to expect your kids to help out as they can, especially given the challenges around lack of help from friends, family, and finances, but make sure they get plenty of time to still have fun and get away from caregiving responsibilities. Wishing your entire family all the best.
posted by range at 7:32 PM on August 12, 2008 [2 favorites has favorites]

Another breast cancer survivor here -- six years for me. I have only a little to add to all the fine posts here. And since I'm Canadian, I didn't have to worry about the cost of medical treatment which might be a whole different situation than the one you're in.

There are different kinds of chemo for different kinds of cancer. I lost my hair but it wasn't a big deal for me. I didn't bother with hats, scarves, wigs, etc., unless I needed them to protect my scalp in hot or cold conditions. Frankly, I got tired of being told how brave I was. Quite a few people thought I'd shaved my head as part of a cancer fund-raiser. A drag queen offered to lend me his best wig (I declined, but was touched by the offer).

I was often nauseous -- sometimes to the point where I couldn't get out of bed -- but only threw up a couple of times. I second the cold, sweet fruit remedy. I ate boxes of orange popsicles and slowly sipped orange slush drinks and found them very soothing. I found citrusy aromas helpful as well, whether room fragrances or aromatherapy. The oddest things made my stomach turn: the smell of corn chips, Vietnamese food (which I enjoyed before treatment and quite soon after). That part was like being pregnant again.

Radiation was tiring, and I'm still not sure that it was some sort of reaction to the radiation as much as the daily grind of going to the hospital, day after day after day, for weeks on end.

I kept at my full-time job for about five of the seven months of treatment, from surgery in February to the end of chemo in September (I did the "slash, burn, and poison" route). I took three weeks off for the surgery, no time off for radiation, and took the entire last six weeks of chemo off.

I wasn't interested in sex during treatment mostly because I was going through a very internal process and didn't have what it took to be generous in that way. My husband was entirely supportive. If you're on Tamoxifen later that can cause issues with vaginal dryness, but drug store personal lubricant took care of that. Our sex life returned to normal gradually.

Humour helps, as it does most things in life. When I lost my hair, I lost it everywhere if you catch my drift. I'm short, obese, and middle aged, and used to say that if my current job was too hard to maintain, I was thinking about a new career as a Penthouse centrefold model. However, there's a lot of pressure to be brave and cheerful as a cancer patient, and in some ways it does help to be one of those, but your wife should go ahead and feel angry and miserable if she needs to on occasion. Personally, I found it easier to go with the stiff upper lip routine, but everyone finds their own way and that should be respected.

My kids were quite little, 6 and 9, at the time and seemed to go through it easily. Nowadays, mum had breast cancer is no more remarkable than mum had her car washed. Most days I feel that way, too.

Best wishes for your wife's speedy recovery and that your family return to normal as quickly as may be.
posted by angiep at 9:54 PM on August 12, 2008 [2 favorites has favorites]

I'm the original poster here and I wanted to provide an update for people searching breast cancer posts in the future.

My wife did pretty good with the chemo. The first four sessions (the AC combination) were the hardest but she scheduled her chemo for Thursday so that the effects hit her the hardest on the weekend. That way she was able to continue working throughout chemo.

The cancer was only on one side but she elected to have both breasts removed out of a concern for a recurrence of the cancer in the future. Based on her family history, the surgeon supported her decision. Reconstruction was started at the same time as the mastectomy. She took three weeks off for the surgery and recovery and is now about to go back to work.

She still needs to go through radiation therapy and the reconstruction isn't done yet, but we think the worst is over. The suggestions in this thread were a huge help to us. Thanks.
posted by maurice at 12:17 PM on January 26