Love of my dx'd with stage four MBC
Sorry for not introducing myself earlier:
It started out with her having back pain in feb this year, and by september we knew there was a tumor eating her L3 lumbar. Two days after surgery we found out it was a breast cancer that had gone to her spine. The same day I found out my mom is terminal with lung cancer, and that is weighing on us both.
That was the primary (?) and only met so far, but the PET lit up like a christmas tree for her left breast and the lymph node under her left arm, as well as her spine.
Ironic : her last mammogram came back clear as a bell, the happy letter arrving about a week after her dx.
She is on course with radiation for her spine, to be followed immediately with courses of chemo. She got her first shot of Xgeva last week because the MO saw elevated bone markers from her visit the previous week.
We went to the MO for more blood work and then to her RO for radiation on her spine yesterday.
This is a real world turned upside-down thing for us, as this is the first tumor, first cancer and she hadn't been in a hospital since the early seventies. She's 57 and I'll be 51 next month.
To get a stage four right out of the gate has staggered me, but she's maintaining her normal grace and poise, so I'm faking it as needed and learning everything I can as fast as I can. Ignorance equals fear, knowledge helps.
Comments
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Hello Keith,
I don't usually post in the caregivers forum but saw your post and wanted to say you will find so much info and support here. I hoping you know that both you and your wife can come over to the stage 4 forum. Caregivers often post there too to get info on what to do and how to help.
It is a devastating blow to get stage 4 from the get go. I got mine back in 2007. Was as fit and healthy as anyone else and had been told the lump in my breast was benign. That from a mammo and then follow up mammo and ooops maybe not. Still didn't think it had spread but yep mets in L3. Like your wife I had rads but not chemo. That is a choice some oncs make. Using chemo now or holding off for later after hormonals have been used. There is debate about which is "better" but as long as it works killing the cancer I don't think most of us care.
I admire you and your wife for "holding it together" but it is also very normal to be upset and fearful. Your wife may at some point crash. So might you too. Deal with it in the best ways for you. This is not something you glide though and come out the other side without a scratch. It's like riding a bucking bronco. Rough, tough and sweating hard.
Many find using a councillor very helpful, again for both of you. A place where you can talk things though without upsetting anyone else and talk about fears with someone who deals with this and has helped many others though. I used it a lot in the beginning and again when things have changed. My husband found it very helpful for him. Something to consider.
Also, many women find some type of anti-depressant and anti-anxiety drug helps them deal with scan anxiety etc. Something else to hold in the back of your mind if needed. Never think everyone else is coping therefore I am doing something wrong. Whatever works to get you though.
But I have just celebrated my 5 year cancerversay and living a very normal life and doing everything I did before so there is am lot of hope out there.
I was 44 when this started and like your wife hadn't been in hospital since my babies were born. Know them quite well now and don"t like 'em. But there you go, that's life.
All the very best for treatment and if you haven't already do come over to stage4 they are all a great bunch of women and the occasional man.
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Thanks for your reply. You have been stage four mbc since 2007?
All the stuff I read had a pretty dark projection for survival rates - if I read you right, THANK YOU! I want to grow old with my love.
She is start chemo as soon as the raditation is done. We haven't yet found out the meds, frequency or dose, but they are also going to put her on a estrogen reducing pill to try and starve it of the hormone it thrives on. She was late 55 before she started menopause, and isn't really through yet so I guess estrogen production is still high and the cancer likes it.
I made my first post in the stage 4 forum - some reminded me it might be good to introduce our situation as specifically as I could.
Love and hugz lady. Thank you.
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Hi Keith,
Peg's situation sounds much like mine. I was diagnosed in Jan. 2010 with Stage IV. Back pain brought me to the ER, and emergency surgery removed a tumor at T4/T5. I went on to rads, Tamoxifen, and chemo. I was also diagnosed with a liver tumor. Things looked bleak, but I'm happy to report that today I have been NED (no evidence of disease) since Jan. 2011. I was 45 at diagnosis, otherwise very healthy, never been in the hospital. It was a huge shock to get this diagnosis... I completely understand your fear and disbelief.
It sounds like Peg is on the right path. Stick around here... there is a wealth of advice and support!
Sending you and Peg my love and best wishes...
Rose. -
Yip Keith,
5 whole years. Have had good responses to treatment. It does depend on type of cancer and hormone response etc. You do need to know that info. Her2 + or - means different types of drugs are more effective than others.
There are quite a number of women who live quite long periods of time with mets. Each woman is different but there is strong hope for long term survival.
Keep those thoughts in the front of your mind and don't let the negative take hold.
Moira.
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Keith,
My heart goes out to you and your wife. I am 57 -- just found out I had BC last May -- I am still in early stages, but spent most of 2010 and 2011 care-taking my Dad and his esophogeal and then (new primary, very-aggressive stage 4) brain cancer -- so find I now have it myself was quite a shock.
So I speak to you both as care-giver (for Dad) -- and (now) care-recipient.
What I wanted to share with you is that as scary and sometimes exhausting as all this is -- I also found sharing Dad's cancer journey (and even his eventualy death) was one of the most powerfully positive experiences of my life. While neither of would have chosen it -- Cancer offered us a short-cut through the trivialities of life -- straight to the core of pure love.
You and your wife have an opening in this to grow into new, more-enlightened humans. None of us remain unchanged by this journey. If you look deep inside -- the epiphanies -- and the new appreciation for the simple joys that we all tend to take for granted (pre-cancer) -- this intensely-vibrant new way of living, where we learn to strip out the unimportant busy-work and concentrate on exploring ourselves and our loved ones... seeking joy and new ways to experience life fully-in-the-moment... These treasures will by far outweigh the pain of the experience.
My lover gave me a pair of new ear rings the morning before my double mastectomy. "So I would feel beautiful in the hospital." I still tear-up appreciating that sweetness, and his impeccable sense of timing.
He had to bathe me for 3 weeks (when I couldn't myself post-surgery) and still massages cream into my scars and rubs my LE-threatening arm. Our relationship has deepened so so much since BC came into our lives... and allowed him the opportunity to show me the incredible and compassionate human being he is.
It has allowed me to lower my facade of 'modesty' and 'vanity' -- and show him not only my strength -- but my frailty. His tenderness and sense of oddball humor are such a help to jog me out of the occasional fear or self-pity...
Anyway -- I just wanted to remind you to look for the blessings hidden in this experience... (at least for me) there have been many.
Linda
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Linda,
You are angel. It took a while to reply to this, I kept choking up when I tried. We're new to this road, but if anything I think my love and I appreciate each other more than ever.
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Keith-one little note of advice to you and Peg-Stay away from statistics. They really have no place in the world of stage 4 cancer. When I was dx with stage 4 back in aug. I read every thing I could get my hands on and it sent me into depression deeper than the dx did. This is the only place I come now. It is such a supportive place. I have been dealing with bc off and on now for five years and just got the news that my tumors are shrinking and my liver panel is almost normal again. I had a nurse back in aug. tell me I had maybe four months left-ha! Things in our lives have changed tremendously, but it has brought my husband and me closer and we dont sweat the little stuff anymore. Im still doing and going anywhere I want (maybe just a little slower) and we are also doing things we never thought about doing. Anyway, my thoughts and prayers are with you and your wife and hope to see her post soon too.
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She finished her radiation on her spine yesterday. We went to the MO this morning - she is now on anastrozole daily and a shot of xgeva each month. Follow up in March with blood work / maybe a scan.
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