Ladies in their 30s?
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Thank you guys so much for being so kind and welcoming!
I may have mentioned it before but I went back to work full time this week after going out on short term disability when I got the mets diagnosis, so I was out about 5 months. It hasn't been too bad coming back to work so I'm hoping that I made the right decision!
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I'm 35 and just diagnosed as a Stage 4.. Triple Negative, mets to my thoracic spine, pelvis and sacrum.. Docs say "tiny spots"
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Hi. I also have stage 4 with bone mets and I am 38. And I live next door in Gray! Who's your oncologist? We should chat sometime.
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I'm 34, diagnosed stage 4 with liver mets right before I turned 32. I just had a baby four months ago...unexpected miracle...so I haven't been on much lately. I've been NED since completing chemo in the spring of 2011 even though I went off herceptin during my pregnancy. Lately I have been having some symptoms that are worrying me...and with so much bad news on the boards lately I feel like the anxiety and sadness is going to eat me alive. Even though I'm sorry for the circumstances, it is good to talk to other people my age who know what I am going through, especially moms of small children.
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Dwinship, you live in Gray?!?! That is awesome! Dr. Weisberg is my onc, I would LOVE to chat with you sometime for sure!!!!!
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((((((hugs)))))) to you All, and wishing you a nice Friday
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Thank you so much, you too Mods!
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Hi! I just joined this forum today. I was diagnosed this past July at age 36. I have two little kiddos ages 3 and 6. I was initally diagnosed as stage IIIa, but only because they didn't do a PET scan until after my surgery. I had a liver met on my first PET scan (a month after being diagnosed). After chemo (which ended in December) my latest PET scan shows no active cancer - yay! I am glad (well, glad really isn't the right word, but you know what I mean!) that there are other young people and moms on here. I'm sad every day that I won't get to see my kids grow up and to leave my hubby alone to raise them. My mother-in-law also has stage IV breast cancer, so I feel very bad for my poor husband!
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I was 33 when diagnosed last month. 11 days later i celibrated #34. Everything is moving so fast, and yet at same time so slow--if that makes since. I am greatful to you all- you make me feel stronger.
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j1e1n1a I know EXACTLY what you mean. I felt like I was getting hit by a train everything moved so fast when I was first diagnosed. I hardly had any time to process what was happening to me! After surgery and chemo I am finally feeling like things have "slowed" down a bit to catch my breath. At the same time it seemed that chemo dragged on forever. So I really do know what you mean. Hang in there!
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brandall -- congrats on showing no signs of the cancer in the liver! Similar to you, they realized I had liver mets on the petscan done after surgery but before chemo. My 6th & last chemo is on Tuesday, and I hope & pray that my scans/markers will show more reduction or nothing at all. The scan after #3 did show that things were going the right direction & my last tumor markers were down by 50% so there is hope
Are you doing any further treatment like lupron or hysterectomy with hormone therapy? I'm doing a hysterectomy at the beginning of next month and will then be put on an AI just not sure which one yet.
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nbnotes -- Yes I am doing further treatment
I'm doing external radiation to my left chest wall and armpit starting the 21st. I'll do 30 treatments of that. 2 weeks after radiation is done I'll be having a hysterectomy (done by a robot - weird!) and then (or maybe before the surgery, but definitely after radiation) I'll be on tamoxifen. I asked if I would be put on a post-menopausal hormone since after the hysterectomy I'll be post-menopausal, but my oncologist said he wanted to stick with tamoxifen first. Although, going on the tamoxifen is why I'm getting the full hysterectomy vs. just an oophorectomy (which is what was initially planned) since there is that slight increase of uterine cancer. So you just did 6 adriamycin and Cytoxan cycles? Ugh, that was my least favorite drug combo ((hugs)) and I only had to do 4 cycles of that! My lesion did shrink a bit with that combo, but the Taxol at the end is really what took care of it. Everybody is so different. It sounds like you are going in the right direction with a huge tumor marker decrease! 0 -
Mods- Yes that wonderful to start out as a sticky- If there is a lot of activity we would love a forum. I know some of our concerns do vary simply because of our ages. When any younger people are visiting this forum for the first time they can see that up there and hopefully get some instant reassurance. I know it was a while before I encountered women in my similar situation. There is a thread for women under 30 but being dx with stage 4 i did feel sorta misplaced.
I really hoped to go to the YSC conference- Thanks English for posting, there is going to be a whole segment on stage 4... I literally just took my invite of the fridge. I have a few things going on this year travel wise and was unable to fit this into my plans...
Mzmerz- you're so right- My oncologist said to me" 40s is young to be dx'd with BC (let alone stage 4!) 30s is rarer, and 20s is almost unheard of."
OKAY SINCE WE'VE QUITE A FEW LADIES CHECKING IN HERE I THOUGHT WE MIGHT BE ABLE TO SHARE SOME EXPERIENCES-
WHAT IS THE TYPICAL REACTION OF PEOPLE THAT FIND OUT YOU HAVE STAGE 4 BC?
By far the number one response i get is "But you're so young!" {in their defense ppl often think i am under 20} I generally respond to that with 2 standard answers, if its someone also getting treatment, I say "We're all too young for cancer!" that usually gets a smile out of them
if its someone that i've met out and about i say "Cancer doesn't discriminate based on age". That usually gets a dialogue going.WHat about y'all?????
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SOrry- I didnt even go to the second page LOL i was so excited about the sticky!
Kasi and Dwinship- Thats awesome that y'all live so close!
Jejick- Sometimes it helps to take a breather from the stage 4 board. I know i also get full of anxiety and all that when i read about someone having progression, worsening conditions and passing. A few particular members who have touched my heart that have passed made it extremly hard where I was off BCO for a while. And yes it is nice to connect with moms of younger children because they "get it" LOL Congrats on the baby! Boy or girl???? Ya know that was the hardest part of my dx in the beginning b/c dh and i were talking about having another child since my youngest was 2 at the time. Sadly thats just not gonna happen for me, but we did get custody of my neice and nephew this past summer. Although they arent babies LOL it did fill that tiny hole in my heart!
Brandall- Oh Wow, I hope you're able to realise that being diagnosed at stage 4 isnt an immediate death sentence, you may still get that chance to see your children grow into adulthood. Mine were 2 and 5 at my dx, now they are 5 and 7. You were dx'd almost 2 years to the date of me. Wooohooo on having no active cancer!!!!! I had been NED (no evaluable disease) for a whole year, I also do very well on treatments. The first one (taxotere) knocked me on my butt, but the gemzar and now xeloda both have been tolerable, minor side effects that do not interfere with me being "MOM". The beginning was hard for me as i think it is for most people when we have to face our mortality, but with time and tons of support and advice i've gotten on these boards i have been emotionally stable
j1e1n1a- Yes it does move so fast, its like one appointment after another, scans and tests and more scans then more tests! It does slow down and become more routine.....
NBnotes- Hmmm hyterectomy- why was that suggested for you???? My gyno always asks why i never had that done, but then again they arent oncologists.....
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I was diagnosed stage 3 at age 30, stage 4 at age 31, I'm 32 now. I'm so glad your post brought all these ladies together. I love not feeling alone.
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Texasrose36- -- My cancer was er+ 90 & pr+40 in both locations. With such a high estrogen #, my onc said we could do lupron shots& tamoxifen first but she would recommend getting a hysterectomy fairly quickly. Personally I want every estrogen making organ gone & asked how quickly after chemo I could have the surgery bc I'd rather just go straight to that route & be able to go on one of the AI's that are supposed to be more effective. My onc agreed & said that it would actually be better bc there can still be hormone fluctuations even with the lupron shot each month. The hysterectomy might not be the right choice for everyone but it is the best choice for me to give me peace of mind.
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Hi ladies, I was diagnosed Jan 2012 29 years old and 32 weeks pregnant with my first. I'm sure I don't have to tell you ladies how it felt for me to hear the news but I can tell you that I discovered a strength I never knew I had all praise to God. My situation appeared to start out good. My onc even used the word "curable". But time has brought many new developments for me. At diagnoses I was stage 2 IDC with one positive node. I underwent two doses of AC while pregnant. I prayed to God to keep my baby safe. 38 weeks I was induced due to high blood pressure and gave birth to a healthy baby boy on March 7. I spent a week in the hospital and was re admitted after one night home with the baby. I was in full blown congestive heart failure. My left heart valve function dropped to 20 percent. Docs were floored and had to drop the AC out of fear that was the culprit. Started TC until mastectomy in Late June.
I found this board shortly after my diagnoses and would come here for stories of hope. My heart completely recovered by June which also floored the docs. It was later determined the CFH was caused by high blood pressure and pregnancy not chemotherapy but I could never be given that agent again. Talk about hope. I was so determined and felt so blessed. Things started to take a turn after surgery. I went in with one positive node,ER+ and came out with two additional nodes that had evidence of disease that chemo killed and triple negative. I was hurt but I stayed strong. My onc referred me to Dana Farber in Boston for a future clinical trial. Two days before my first visit to Dana Farber I had my first Pet scan and a local-regional reoccurrence was discovered so clinical trial was put on the shelf. I have to say ladies that was the first time I truly began to wonder what all this meant but I prayed and prayed. My onc didn't seem too concerned because I still had radiation to do so it was altered to cover the spots from the scan. Finished rads in October.
Present day- two days before my birthday pet scan
picked up a spot on pelvis and sacrum after some pain in hips. Ladies I am trying to hold on with all my being. I just feel like things keep getting worse at the same time blessed. My holidays were good with a touch of sadness because I can't help but to look at my boy and ponder about the future. My heart breaks for him, he is perfect. I try not to feel guilty for bringing him into such chaos. My family has been wonderful and I am so thankful for them. I know they are scared and I try to stay strong for them. I am currently back on chemo and scheduled for another scan in a few weeks.
I really want to thank you ladies for your stories and words of hope. It has given me courage many of days just to come and read the posts. I am sorry for writing a book I just want you all to know that I admire you and and pray for you all. I feel like i should tell my story now and i know i can share my fears here. Please pray for me and my family.
I don't ask" why me" because why not me.... what makes me any different from anyone else who has to walk this journey. A dear friend once told me that this was just a" bilp in the radar" ......I hold onto that.
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Brandall-- the tamoxifen risks are part of why I'm doing the full hysterectomy as well, but I am curious about your onc's reasoning to still do tamoxifen since mine is having me do an AI. It is interesting how each drs thinking can be so different.
Yes, 6 ac which had not been kind to me. Very ready to have it over. Before knowing it was in my liver we were going to do taxol as well but the contraindications w/ liver disease had my onc canceling that portion. I hope the ac alone is able to do enough.0 -
NBnotes- thanks for the clarification
I am not sure of my estrogen number, sometime during the last 2 years my ER went from positive to negative i had progression on tamox so was put onto the lupron shots with arimedex (spelled wrong i know) that makes sense... I also was thinking remove anything that might be contributing to it. My onco said that in the future if need be that option is there. i think with our ages in mind they dont want us to have the other SE related to ovary removal or histerectomies... I know that bone loss is something they think about. Although i am already on Zometa my dr said not at this time....Evans- Phillipans 4:13 girl! Its hard to find the strength sometimes, espcially with set backs! My fav thing to say its just a speed bump! May slow me down but not stop me!
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Brandall......please let me know how the hysterectomy goes. I am considering doing that as well this summer. But I am somewhat concerned about side effects of instantaneous menopause since I can never take artificial hormones ever again. My oncologist says it's up to me.........it's such a tough decision.
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My onc and surgeon both looked at me like I'm crazy for asking for a hysterectomy since the adrenal glands still produce estrogen. Do they have any treatment for being pr+. Nobody has ever said anything about that.
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Good question SPAMgirl. I don't know about the pr part. That might be something to ask next time. I think they worry about young women with BC having hysterectomies because is puts us into instant menopause and we can't take the artificial hormones to deal with the side effects (weight gain, hot flashes, lack of libido, vaginal dryness, etc)
I don't want to rush into it, but if it could prolong my life by helping to control my cancer, then sign me up and I will deal with the side effects.0 -
SPAMgirl - My onc encouraged the hysterectomy once I was stage 4 so its weird to me that yours were all that surprised at you asking about it. My onc & gyn both think it is the best action for ME. Of course, I know the adrenal glands and even fat can play a role in estrogen production, but that is what the AI is partly for , right? I don't know....its just all so confusing when you start comparing what doctors say. I was already in perimenopause before the BMX, and I'm definitely having chemopause so I don't think it will be that big a shift for my body. Of course, I might be really surprised. No one ever really talks about the PR+, but I think the hysterectomy and AI's help with that as well from what I've read.
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NBnotes- I agree, it is so confusing when you compare notes with others! for instance, i was dx stage for from the get go and both my surgeon and onco recomended having at MX it was my BS that suggested the bi lateral but left the final decison up to me... SO many stage 4 women are refused the MX- it always leaves me scratching my head! Why some and not the others!
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I agree that it's confusing when you start comparing notes! I was complaining to my oncologist that I was upset that I wasn't able to see an oncologist until 4 almost 5 weeks after my mastectomy. I have Kaiser for my insurance and I've found they they are very segmented in their breast cancer care. I was upset because I thought if I had had a PET scan prior to my mastectomy we might have caught the liver spot earlier. He told me that he was sorry that it caused me some anxiety, but he was glad that it happened the way it did or I might not have had the mastectomy at all. He said they don't like to do mastectomy's on stage 4 patients, but he was glad that I got one due to my age and wanting to treat me as aggressively as possible.
NBnotes - I had never heard of the liver contraindications with Taxol. I guess I'll have to go look that up now. I really feel that Taxol is the one that took care of my spot, so I guess I'm glad that I had it, but it is scary that maybe it was tearing up my liver while healing it. I'll also have to ask my doctor again why he wanted to do Tamoxifen first before any of the post menopausal AI's. Some days cancer really overwhelms me!
So much confusion with all the treatment!
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brandall & texasrose -- It is funny that you both mentioned the mastectomy with stage 4 thing. I was just talking to my mom about that yesterday, and said that I was kind of glad that mine happened the way it did because I would have been furious if that option had been taken away from me. I really don't get the reasoning behind often not doing mastectomies when people are stage 4.
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i was just diagnosed stage 4 when my Pet came back for bone mets. Originally they wanted to do bilateral after chemo(to shrink) but don't know what will happen now. I start chemo next week. Time for a hair cut.
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Jen Smith's video (about a minute long) about having MBC: http://www.facesofmbc.org/videoWallDetail.aspx?video_id=70
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Hi, I am 36 and was diagnosed at stage iv at 32. I have a 9 year old and a 7 year old. Currently on TDM1 for 2 years with stable scans.
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As mentioned in the beginning of thread. I was diagnosed at 32 Stage IIIA. Had a good run for almost two years when small mets in liver and lungs appeared. Diagnosed at Stage IV in November, 2012 at age 35. I have a 4 year old. Was living a very active life until Stage IV. Although I feel good other than the days chemo (perjeta/herceptin/taxotere) keeps me down. I decided to go on disability permantently in order to spend more time with my daughter, husband and focus on exercise, diet and enjoy some travel (hopefully). Fortunately, we are blessed financially with the ability to do this with some comebacks and help from a very supportive family and community. Once I made the decision to stop working it took a huge load off stress wise. I miss my co-workers and using my brain desperately but the trade off is worth it. Plus, one of my co-workers is my sister and my supervisor is one of my best friends so I still feel like I'm in the mix and they bounce ideas off me. lol.
I'm in the northern suburbs of Atlanta. Anyone else in my area? There is a Stage IV group that meets once a month at a place called Turning Point in Alpharetta, Georgia but I think most of the ladies are a bit older than me. Would love to find someone in the area to commiserate with in person who may be going through the same things as my family.
Thanks for starting this permanent forum mods!
Tera
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