I'm a support person, but I'm confused!

[kristin421]

2 weeks ago, I found out my friend has known for a full week prior that she has HER2 stage 4 breast cancer (IDC) that has mets to her liver, shoulder, both lungs, entire lymph system and a few days ago another test came back showing it in 3 places on her spine (vertebrae, not spinal cord) and in the other breast. She won't get an MRI to determine if it's in her brain as well...because she's claustrophobic and because her feeling is if it's in all lymph nodes, it's in her brain too.

She has a family history of breast and lung cancer, so she's seen every 6 months for the last 5 years. In Feb of this year, her physical was fine. In Aug they found the suspicious lump in her breast...did a biopsy and removed her left lymph nodes. Cancer. The initial plan was to do a mastectomy, chemo and radiation. Because hers is so agressive and fast spreading, they are treating her only with herceptin to stop new growth, (not sure if it makes current cells shrink?) and then proceed with chemo and rad in an effort to improve pain management and quality of life. They told her to quit her job so that she can get her affairs in order. She has been approved to start receiving Social Security Disability payments and her life insurance will be paid to her at face value so she has money to get the things done that need to be done. She has 3 kids ages 4 to 14.

What I'm confused about is not her state of denial. She's mad...and scared. I know that people process things like this in different ways and her coping mechanism is to hide and ignore it for as long as possible. She's very strong and I know that when this initial shock has come to pass, she will do what she needs to do for herself and the kids.

What I am confused about is how do I support her? I've been reading up on everything I can get my hands on...especially since bc runs in my family too. I've found so many sites that offer so much hope and hear stories of so many women that are stage 3 and 4 and have been for 2 or more years that are on herceptin. Why does she have to get her affairs in order so soon? I mean, I know that's a good plan, but they are telling her she won't be able to go camping with her 5th grader this coming April. Could that be true? Anyone out there that can confirm based on what I've detailed? She's 37 and I can't believe she won't make it to May (her 38th birthday). I just feel so bad. It's not fair. I'm scared for her and her boys and I feel so bad.

thanks,
Kristin

[Tom]

Dear Kristin,

It is wonderful that you are willing to help your friend at this difficult time. I personally believe that they are writing her off too soon. I think she certainly needs a second opinion before they hand her a shovel and tell her to start digging. I realize that she is in a bit of a pickle with that kind of systemic involvement, but she needs to hear about some other options.

I would ask her oncologist if they wouldn't consider an approach that uses some type of conventional chemotherapy to try to knock the cancer off it's feet a little, followed by surgery on the breast to reduce the tumor load so that other treatment has a chance to do it's job. I'm sure some of the other folks here will have other ideas and approaches, and will make them known shortly.

There is also the possibility that she might somehow receive the latest drug for HER2+ breast cancer, known as Tykerb. This could be given along with Herceptin, and/or other chemotherapeutic agents for better punching power.

I think she needs an oncology team that is willing to make a stand against her cancer before giving up. I have read a lot here about women finding that kind of attitude at the Cancer treatment Centers of America. I'm sure you can find the nearest one to you on the Internet.

You didn't mention the other 'receptor statuses' of her tumor, that could also provide additional drug therapy options depending on the results. There are drugs that can be given to address the spinal metastases as well. Try to get us some more information, and perhaps have your friend sit down and review this website along with you to give her a mental boost, so that she does not give up. Let us know what is going on please. The people here are always willing to help if they can.
Sincerely,
Tom

[jessica]

I'm also 37years old & have been survivING this disease for the past 4+years. I was dx'd @33yo,Stage IV@ primary dx-liver mets. There are so many women on this site that can offer testimonials about survivING this disease and offer hope & wisdom & courage & support. If your friend can find her way to us, she'll be welcomed with open arms.
Sounds like her current status has become pretty complex & I hope she's being treated at a facility that can really support her. Because my disease has been so complex, I switched from a private practice oncology group to a Cancer Institute w/a true interdisciplinary, TEAM approach. It became such a burden to have to consult w/so many different specialists,(onc,surgeon,radiologist,etc) w/too much of a delay in communication btw all my docs. Now everyone is under one roof, w/immediate access to the same records, scan reports, films,and each other! I hope your friend is pursuing a et a second opinion, preferably from a specialized Cancer treatment center/institute.
If what you're stating about your friend's treatment approach is accurate, it seems confusing to me that her oncs are witholding chemo? There many great synergistic combinations of chemo+herceptin, it seems naive/ignorant not to get started right away. So many of us have managed so well on chemo, with some modifications to life. I've done 81 weeks of chemo (so far, unfortunately w/more in the near future) & have still maintained an active, happy life.
My advice to you, as a loving, supportive friend, who probably feels pretty helpless, is to follow her lead...Yes, you may feel angry & scared, but imagine how she must feel!
Put your own pity for her situation aside & offer your friendship, the same friendship you've always shared, with or without cancer. Many times I'm not sure what I need, from moment to moment, inspite of the great generous offers, but I always need my friends to just be there. Sometimes I want to talk about cancer, sometimes I don't. Help her be the best, strongest, loudest advocate for her care, but becareful, UNSOLICITED ADVICE is rarely ever welcomed.
There are no rules when if comes to this disease. All I know is I would not be here today if it weren't for the love & support of my friends and family...As my dear friend has said to me "Stay strong...and when you can't, Lean Hard."

Good luck & God Bless~

[MJo]

Your friend is lucky to have you. I agree with what the other women have written. If your friend is not being treated at a cancer center that treats this disease aggressively, please get her to one ASAP. It's good that' she's on Disability She needs all her time to fight the disease and spend with her family. SSI Disability doesn't have to be permanent. As for putting her affairs in order, I had an early diagnosis (Stage I) and I did that. The word cancer made me put my affairs in order.

The first clinical tests of Herceptin were on Stage IV women like your friend, and the results were so positive that they rushed the drug through FDA approval. I hope your friend will respond to treatment and be able to get on with her life. MJO

[Barbara H.]

HI,
You certainly are a wonderful friend. The members who have already written have given you wonderful advice. Two and a half years ago I had a recurrance with a 3cm tumor to my brain along with liver, lung, skin, and mets through out my lymph system. I had brain surgery and a month later my oncologist started me on Herceptin alone because he wanted me to enjoy my daugter's wedding. It turned out that the Herceptin alone took care of all the visible mets until March of this past year when I developed minimal bone mets in three places. Unfortunately, I had to add Navelbine to the mix, but it has worked. I initially was diagnosed in May of 98 and as Stage 3A, Herceptin was not available to me then. Nevertheless, now at stage 4 I continue to teach third grade full time, take graduate courses each year, and live a full life. I am now 58 and not thinking about retirement any time soon. Your friend needs to get to a cancer center where they offer her hope. Yes, stage 4 does have a stinky prognoses, but there are plenty of women that have been on Herceptin for years with stage 4 who are still around. And, now they have a new drug, Tykerb, soon to be approved that crosses the blood brain barrier. In spite of my deplorable condition a few years back, my oncologist told my husband that I could have years. At this point your friend is probably in shock, and is thinking mostly about her children. Since she has just recently been diagnosed for the first time, she should probably add other treatment options to the Herceptin. Good luck to you and your firend. If you can do anything to help her, it would help her to start reading the member profiles on this site and to perhaps join and get some support. Statistically, people who are more informed about their disease survive longer. Again, I wish you and your friend all the best.
Barbara H.

[Sandy H]

I can say "Amen" to all the advice given here. I am also a supporter and it is hard to some times feel like I am giving the kind of support they need. You can't give up she needs you more now then ever. Keep pointing out to her those here that were given a death sentence, told to get their affairs in order. I am one of those and boy, that first year was a wild rollar coaster ride for me and my family!! I did not have the support that I have now or did I know anything about cancer. I had worked in a hospital but saw the bad ones and not the good ones. My impression was not a good one. Besides no one, but God, knows when we will die!! I am with the others here she needs to start aggressive chemo now and hit it hard. Wishing you all the best. Start praying and you will be led and know what to do. hugs, Sandy

[Bev]

It sounds like you are hurt she took a week to tell you. I have a weird tendency to keep things to myself too. Don't want others to feel sorry for me. I can do that pretty well myself.

Things you can do: Keep on this site so you can learn what treatments might be worthwhile and push her to try different ones. Do a trial or compassionate care tykerb. Asco info will be out in Dec for all the latest and greatest. Driving and hanging out at treatments if she's open to it are good. Dinners, errands, stuff with the kids, yeah. I think she'll tell you if you're doing too much. Be there, she'll talk when she's ready.

Her world has been turned upside down. She's entered a place you can't be. She probably feels like what difference does it make if she has brain mets if all the other crap is going to kill her first? But you have also gone somewhere else as a friend. Thanks for helping her. She really needs other opinions and aggressive care

Like others have said, there's no telling how long you have. If you stick your head in the sand, it will be less. Best of luck. BB

Keep us posted. It can be beat or delayed.

[chrisy]

Kristin,
I'm so sorry your friend is having to deal with this shocking diagnosis. And that's just what it is - shocking.

I agree with everything that has been said here by others, and would also add the following.

I think it is premature to be setting "timelines" before she has even begun treatment. Many women on this site are outliving their prognoses with great quality of life. Don't give up on that camping trip yet!

She needs to know that there are many good treatments out there that can work well and for a long time. In my opinion she should get the brain MRI. IF (and that is not a foregone conclusion) there is cancer there, most chemo drugs are not effective against brain mets because they do not cross the blood-brain barrier. However, there are other treatments for brain mets which can be very effective when found early.

The most important thing you can do for your friend is just what you are doing - love her and be there. As she gets more information and begins treatment, there will be more and more you can do in terms of "practical support" but just knowing you are there is HUGE. I came to learn that when people gave me rides or meals, what they were ACTUALLY giving me was love.

I highly recommend you check out the following website and the book "Fight Cancer" by Richard Bloch who was given the cancer death sentence and then died of something else many many years later at a ridiculous old age. You can actually download the book from the website. This book has excellent advice for how the patient, family, and other supporters can mobilize for the fight.

http://www.blochcancer.org/

Another good book is There's no place like Hope by Vickie Girard, a longterm survivor of Stage IV bc. This book really helped me.

This site is also a really wonderful, hopeful and intelligent place and I encourage you to visit again and bring your friend! There are lots of experienced and knowledgeable women and men here to make the journey easier.

Above all, do not lose hope, and do not let your friend lose hope.

Take care
Chris

[SusanV]

Kristin,


Thank God for friends..My advice to you as to what to do for your friend, is the amazing LIFE LESSON that I have learned from several people in my life since my diagnosis in August.

Don't EVER ask your friend what can I do for you ? She won't have an answer to give you.. she is dealing with shock, denial and so much more. There are several stages that you go through one more emotianally painful than the next.

So instead of asking...Just do Something...

Some examples, 4 of my neighbors got together and every three weeks when I get my chemo on Monday they each take a night Monday through Thursday and bring dinner for my family...unbelievable acts of kindness

Every Saturday after my chemo, my sister in law takes my kids ( 6 & 9) for the entire weekend for bowling or other fun activities which allows me time at home to not feel well, and not have to worry about the kids. A wonderful gift.

Possibly think of a fun Saturday activity and, tell her that you really would like to take her kids for the day...It will give her a day to cry and not have the kids to worry about.

I have learned from these and others, that although in my life I really meant well when I asked others the question "Can I do something for you?" People don't know what they need. From now on I am a do-er not an asker. Hope this helps.