BC Husbands and Boyfriends Hangout

gonmlobos

she wants to leave it as it is. she is very excited about the report and doesn't want to change anything. i think she would rather take her chances. we will do regular check ups and screenings. i guess i feel it is too good to be true after all that i've learned and feared. i sure would hate for a new invasive cancer to show up, but i understand her not wanting to go through any of the therapies. i'm going to take it a one day at a time. i'm not sure yet what else to do.
tim

KariLynn

Tim,



I'm glad your wife got good news from her onc. Try not to worry too much - the majority of people never get BC and most who are caught early don't get it again. You read about the exceptions because we're the ones in the battle.



Maybe you could ask the wife if she would be willing to let another doctor look at the pathology reports - I'm sure you could find one who would review them without your wife needing to go to an appointment. I know I'd rather not be poked and prodded any more than necessary!!



Take care of yourself and try to enjoy every day - none of us know how much time we have but most people don't get such a vivid reminder. Make the most of it.



(PS - Sorry for busting in to your hangout!!)

Notsopuny5721

Tim: I like KariLynn's suggestion: consider having another doc review the path report w/o requiring your wife to have another exam. We actually did that; got a copy of the path report and had a doc/friend review it.

KariLynn: Welcome! No apology necessary. We're not an "exclusive" club. Come as often as you like; and bring a friend ;-).

Greg

gonmlobos

i agree with you greg. traveling right now isn't much of an option for us. i think if the path report was different we would try to figure something out. thanks karilynn. i have a list of local onc that i'll check with. maybe i can get a third and fourth opinion for that peace of mind. i hope everyone is doing fine. i'll be glad for you when treatments are over.
tim

suzie14

Tim...please at least get another opinion. I was told that if a tumor is 5cm or greater, both chemo and radiation is recommended. Perhaps radiation alone would help as long as the tumor was not invasive.
I would be really leary just relying on the opinion of an onc who is leaving his job....why do you think that is???? Something doesn't seem right there.
I know this will scare the bejesus out of you but recurrance is not a picnic!!!!!

gonmlobos

yeah suzie i am going to contact the three onc's i have on my list to see if they will read the path report for us. we'll feel better having their opinions. greg and shemp how is it going?
tim

Shemp

Hey Tim,

Glad to hear you're getting some more opinions.

My wife's having a pretty tough go at it this week. Energy wise, she seems to be good, all things considered. But she's apparently not so good in spirits. She thinks it's the switch to Taxotere, but I think it's a combination of things coming together in the perfect storm. I think she's entering chemopause, and I assume this throws off the hormone levels and increases her emotional sensitivity. Add in the cumulative effect of it being chemo #5, and then top it off with some nuisance side-effects, and it's left her saying, "I want to be done, NOW."

It's been a week of some cheer-leading and encouragement, but she's still been pretty unhappy at times for a week now. Just a week earlier, she was all jazzed that we had crossed the halfway point. It's quite a radical change, and I hope she's able to gather up the strength to find her upbeat, positive self again.

The other part about this week is that she suddenly can't see the end. This whole roller coaster started the last week of July, so we're a good three months into this, and chemo will be done in a little less than two more months (just 3 more doses). She's just completely focused on what's become of her physical well-being: the sores, the weakness, the baldness, the hot flashes etc.

Notsopuny5721

Hey, Tim, Shemp.
Shemp: Sorry to hear your wife's not feeling great. I bet it's the taxotere, it's a pretty stong drug. As my wife (who had it) put it, "why do you think they call it TAXO-tere? -- Because, it's TOXIC!" Plus, there's definitely a cumulative effect to the treatments. The docs don't always like to admit that.

So, pamper her as much as you can. My wife ate most of her meals in bed the first few days after each treatment and sometimes longer. Make sure she drinks a lot--especially the first 48 hours after each treatment, to flush out the drugs, etc.

Tim: How's your wife doing?

My wife had a pretty good week. Neuralgia pain is not as bad, but she's still battling the fatigue--especially when she overdoes it (e.g., too many errands in one day). Part of adjusting to the "new normal" that Marc Silver talks about in his book...

Best,
Greg

cowgirl

I just wanted to pop in and say how grateful I am to watch you guys suppport each other! My DH is not "into the computer" except to bid on stuff. You guys do a great job here! Thanks Greg! You started a great thread!

132

Hey all. Where do I start? At the age of 19 I think I've lived with it all. I've been with my girlfriend (18) for nearly 3 years now. At the age of 45, her mother was diagnosed with BC, but after various treatments was given the all clear. Just recently her Grandmother (82) was diagnosed with BC. As if this wasn't enough, my girlfriend has convinced herself that this guarantee's she has an abnormal gene and will also get BC. I know for a fact that both her Mother and Grandmother having BC doesn't guarantee she will get it but I do understand her chances, the probability is highly increased. I don't know what to say to her anymore, I'm scared for her but trying to stay strong and look further into this. I know she's only 18, and if she were to develop BC it may not be for many years yet, but the stress she is putting herself under can't be good for her. She won't talk to anybody about it. As a loving boyfriend, I'm turning to the husbands on her to try and give me some advice, what can I say to her? I want to reassure her that she'll be fine, but knowing the risks, I can't lie.

Regards. MD.

Notsopuny5721

Cowgirl: Nice to see your twinkle-toes on this thread; and thanks for the kudos!

MD: Welcome to the thread. My wife's mother and grandmother also had BC, so there *can* be a hereditery link involved. However, scientists have discovered a gene they believe is responsible for BC. It's called (if memory serves) BRCA. Your girlfriend can have herself tested for this gene. If she tests positive, then her doctors can suggest various options for her to reduce her risk.

You sound like a great guy; your GF (who is lucky to have you) is definitely the beneficiary of such a loyal and loving guy.

Come back as often as you like and keep us posted.

Greg

Shemp

Yeah, there's a BRCA1 and BRCA2 gene mutation that significantly increases one's chances of developing breast cancer. She can be tested to see if she has these gene mutations, but doing so can cause undue stress, because even if she is found to have one of the genes, short of some radical procedures (esp for an 18 year old), there's not much to do but be vigilant. The other problem with doing gene testing is that they believe there are other hereditary gene mutations out there that haven't been discovered, so it may not be found under today's testing even if one exists.

Breast cancer is a "funny" thing. My wife is 29 and has no family history, yet there are several of those out there that have family histories that never develop the cancer.

You can't worry about what you can't control. There's too much life to live to consume one's time fretting over what may or may not happen. Believe me, that becomes more true when you're standing on our side of the fence.

The only thing your gf should do is stay vigilant with her self-exams, and possibly start doing mammograms at 30 instead of 40 or 50. There's no magic bullet to stop or prevent this, but you can live healthy, exercise, avoid excessive fat and alcohol and keep up with regular check-ups.

So live life, love life and hopefully we never have to hear back from you or your gf on this board!

gonmlobos

hey md, greg and shemp pretty much said it all pretty good. i hope that the energy being spent on worrying about what if can turn into a real positive love for life. not taking the little things for granted anymore, every moment and every little thing is important. best wishes.

my wife is doing well and doing more and more everyday. she seems to be anxious to get back to work. we've been busy with her drs and mine, so i haven't contacted the other onc's yet , but i will soon.

greg and shemp, you guys really seem to be quite the pillars of strength for your wives. it is good to see you both so knowledgable on the situation and just being there for them. i'm sure you guys feel a lot of frustration too. not being able to rid them of the awful side effects and all. i even wish i could do something.

well thanks for being here and like always i wish you all the best.

tim

i think i'll call the onc's today.

Notsopuny5721

Hey Gang: Hope everyone is doing well today. Tim, your comment about being pillars of strength got me thinking and then I came across this article: "Caregivers Often Neglect Their Mental Health," http://health.yahoo.com/news/126053.

It's worth perusing if you've got the time.

Best,
Greg

gonmlobos

interesting article greg. i hope you guys are taking as good care of yourselves as you are your wives.

depression and anxieties can be very debillitating. i know first hand all to well. i wondered if i was going to be able to pick up the slack after jen's dx. it has actually helped me. i don't know how i would do if hers was an advanced case. i would like to think i would be able to dig deep down and pull it off.

there are some good meds for depression and it is very treatable as are the anxieties. i would recommend that anyone who might be feeling shakey to get to a psyciatrist to get help. it is pretty mellow treatment compared to chemo ect. then a person can remain a pillar of strength for their loved one.

take care! tim

Shemp

In a some twisted sense, I'm thankful my wife was caught early. I can't imagine how much harder it is for the supporters of stage II and III people. Not that being in your 20's and knowing this is a lifelong thing to contend with is really that great either.

csp

Hi Shemp,
I hope you all don't mind if I barge in for a minute. I read your post in the taxotere thread and just wanted to tell you that after my sister Denise's #2 of 4 taxotere she was felling pretty low although like your wife she was getting closer to the end of chemo just couldn't rally emotionally . I encouraged her to speak to her onc. about this and he started her on an antidepresant about 3 weeks ago and I am happy to report she feels much better. I think it is a the accumalitive effect of the treatments and just dam sick and tired of being sick and tired . Also if she has gone into chemo pause that adds to the mix with the decrease of hormone output . She has also had trouble with sleeping which I also think is from the chemo as I have read many women having this problem during treatment. Add hot flashes in the mix to wake you once you do get to sleep gets pretty taxing. Her Onc also gave her an rx for sleeping pills to help on those nights. Denise hates to take pills and was resistant at first to the idea of more meds. but now she said she wish she would have done it sooner and although there are other symptoms like thrush and fingers and toes tingling and nails hurting she is not depressed any more. Sorry for butting in but wanted to see if I could help. Denise will be taking last chemo on the 17th of Nov. then on to rads.
Hugs to you and your wife~
Carrie

cowgirl

Depression is a reality for care takers. My own DH has said nothing has worried him more than my BC. He has watched his mom pass slowly away but to him my illness was harder. Maybe cause we all look so good at first and then treatment makes us look so bad. I know I looked bad, because a friend of mine told me recently I needed a couple of days in bed.

I love this thread you guys are just so great! I can not tell you how much it makes me smile seeing a post on it!

Notsopuny5721

Tim: Thanks for the Rx re: anti-depression meds; it's good to know what's out there if necessary.



Shemp: If you wanna read about one man's account of being there for his wife with stage IV, check out the "Need a place to vent" thread (get your hanky ready):

http://www.breastcancer.org/ubbthreads/s...&PHPSESSID=

This guy was a tower of strength, but we should never know from those things, as they say.



Carrie: Welcome to the thread, and thanks for your advice. I was nodding my head several times reading your post, thinking: "been there, done that!"



Cowgirl: Dealing with my DW's illness was/is definitely harder than my mother's. I think one reason is the relationship is different, closer. And my wife also was/is very concerned about how surgery/chemo/rads affected her appearance. Everytime she asked I'd tell her she was/is still as beautiful to me as ever, and then I'd give her a little hug.



Best,

Greg

csp

Hi Greg~

Okay guys sorry one more time barging in. You mention Bolder and I just wanted to let you know that I heard form him the other day. Last Sat he signed up for the Iron man triathlon it will be held exactly 1 yr after his Dear wifes death. Lance Armstrong if you remeber was a inspiration for he and his wife. The race involves 2.3mi ocean swim followed by 112 bike ride and a 26.2 marathon. He has joined a master swim class and in group rides in order to prepare. He has no family in the states as he is from Canada, so through this he is meeting new friends. Just thought you might want to know he is doing okay. By the way how is jrc? Have you heard from him lately?



Carrie

jrc

Carrie,

I'm hanging around. Just had another scare. K admitted a couple of days ago that she has been having headaches. Of course we assumed brain mets. She had an MRI yesterday and while she does NOT have brain mets the bone mets are progressing again. She going to have a number of tests done (CT, bone scan, and bone biopsy) and the ONC is going to change up her treatment again. The journey continues.

Keep us posted on Bolder if you hear from him.

jrc

Notsopuny5721

Carrie: Thanks for the update on Bolder. If I'm not mistaken, I think it's been more like 1 month (as opposed to 1 yr). And, btw, feel free to "barge" in here any ol' time you please. You're comments are always welcome!

JRC: Nice to hear from you, again. Good luck with the tests; I hope you guys hear good news! I remember when my wife (who 's tumor was stage 3) suddenly developed hip pain, and we feared the worst. She had an MRI and fortunately they said it was just arthritis.

My best to everybody,
Greg

csp

Sorry to hear about the mets stirring up again jrc, I am glad to hear from you, have thought about you and K and wondered how you both are doing . So glad to hear it wasn't brain mets but discouraging news just the same.
I am sending positive thoughts to you and K that the new treatment will knock the mets back down again.

Thank you Greg for the invite . Ok guys I will barge back out again, Journey on and kick some Cancer butt!!

Hugs to you and your Loved ones~
Carrie

cowgirl

Hey guys can you help out on the radiation burn thread. Carrie and I are clueless and maybe you guys have more knowledge about it.

Thanks guys!

Notsopuny5721

Cowgirl: Can you give us a link to the rad burn thread? I tried finding it w/o success.
Thanks!
Greg

cowgirl

it is the mum burned by radiation! I just spent 30 minutes looking for another thread, I guess since we grown it is much harder to find stuff

Notsopuny5721

Cowgirl: I found that thread. Unfortunately, I don't have much to add there, except, maybe her mother should take a bit of a break from her rads (assuming she's still in the middle of treatment), as my wife had to do, when her burn got too bad.
Best,
Greg

jrc

Sorry to change the line of thought on this thread, but I didn't really want to start a new. I want to thank everyone for their support. Simply being able to write these thoughts down has helped.

Bad news from this weeks CT scan is that K now has liver involvement. The ONC says this is a good news bad news kind of thing. He says that liver mets is easier to keep track of than bone mets. The bad news of course is that this new indication of liver involvment means the cancer is still progressing.

I would say I'm pretty well crushed at the moment. K is getting a blood transfusion and the boys just got home from school so I have to go.

All the best to everyone and again thanks for listening.

jrc

csp

jrc
dam I hate that , I have been thinking of you and K . Hang tough my friend as I know you will! Hope new treatment will knock the mets back down again!! I am sending big cyber hug to you the boys and K .

Carrie

cowgirl

jrc,
So sorry to hear this news. Just remember you and K are in this together, remember to take time for yourself even if it is hard to do. Try to plsn something fun this weekend for all of you, something simple for K. She needs a release from stress!