Ladies in their 30s?
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Just checking in to see how everyone is doing. My 1st 3 month checkup as NED is on Tuesday, and I am just hoping everything is still good. We are just doing the bloodwork on Tuesday as well, though, so I won't know anything for a few days after that.
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Nb- sending positive thoughts for your appt. please keep us posted.
Would appreciate any advice or suggestions of questions to ask my MO. Not sure how much of this I shared but basically I was diagnosed with a bone met to my femur in January and at the time the PET also showed questionable node in the right axillary region on the side if my original BC. I started treatment in March and had another scan mid May which showed improvement in the hip but the node remained stable. The tumor board recommended repeating this scan in eight weeks and then doing a biopsy if the lymph node remained. My recent scan showed no other area of disease other than the possibility of this node. However the board has now come back and given me two options: a CT guided biopsy of the node like I was expecting, or Hey wait and see and rescan approach With the thought being that the node was slower to react then the tumor markers which had fallen significantly and remained low. Though initially a few months ago my MO said that her gut reaction was to pluck it out if it turned out to be cancer, she is now suggesting the wait-and-see approach and feels that treatment is working and would not change course even if this was a metastatic node. Apparently the biopsy would be invasive. I spoke with her today but have an appointment with her in a week. I'm trying to figure out a list of questions for her or things that I should do to make this decision. Obviously as all of you can understand I feel that the stakes are so high and I just scared to make the wrong choice. I'm in the middle of a family vacation too and trying to focus on the positives that nothing has gotten worse and that things have actually improved because my hip is now clear. Thanks ladies!0 -
CJRT-
go with what your gut tells you to do. That is always the right decision. The only right decision is the one you can live with. I know this doesn't help but really its the only answer.
Everyone is different. Some might say get it out of there if there is any chance it is cancer. Others will say, you can always take it out later if need be. People might say if its its cancerous, it is already there what is a few more weeks especially if you are currently under treatment. Others would say, if its cancer then if you leave it you are asking for trouble. I am sure these are all things you have gone over in your head. That is why I say you need to do what you are most comfortable with. Can you live with waiting and the risk it could or could not entail. Do you want to avoid what could be an unnecssary procedure? Or are you wiling to go through with the procedure if in the end it turns out you didn't need to. These are the things you need to ask yourself and then make a decision. Whatever one you make will be the right one for you.
I might go over with your oncologist one more time who things would be different if the node is positive. Understand if he/she really believe that it woudl or would not change how they are treating you. Sometimes they say the wouldn't change things but really in the back of their minds they might.
sorry that you are faced with a no right answer question. I hope you can make peace with whichever choice you decide
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Thank you, leftfootforward, for helping me to process things. 💜
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Hi ! I'm thinking about reconstruction (I'm wearing prothesis's right now) ..... does anybody else want to do reconstruction being a stage 4? I haven't spoke with my ONC yet to get her opinion, to see if she thinks it's a good idea. But so far I have been stable on this med since September 2012. Is anybody in the reconstruction process ? I have LE too, do u think that would be a problem ?
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Hi Everyone,
I'm new to this forum, and I'm 35 w/ mets to the bones. I was diagnosed 5 1/2 years ago. I don't know many young women w/ mets. So I'm sad/grateful to find new groups.
Christine0 -
So, I had my first 3 month follow-up since becoming NED, and thankfully NED is sticking around!
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I am 39 and was diagnosed at 38. I began this fight at stage IIb and it quickly spread to the liver. I'm taking Xeloda as of now but I too don't know many women my age who are fighting breast cancer. Everyone else who has known anyone with cancer thinks they know what we are going through, but all cancers act differently. It is a hard thing to explain to your friends and family but they are supportive none the less. These forums show that we are not alone.
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Great news, nancy!!!!
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amgsc - Sorry that you have to be here, but welcome! There are a couple of us on this thread who had liver mets so we do understand, and this forum and the site as a whole are such a help when others don't understand.
crsp34 - Welcome as well! Glad that you found these boards/ this forum. I know it has been a huge help to me!
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Any ladies from South Florida?
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Central florida
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Tweety- I haven't tried any of the support groups because I feel like an outsider as stage 4. Are you involved in any where you are? Would love to organize a get-together if any ladies ever venture south.
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I was diagnosed stage II at age 33 in 2008. Then stage IV at age 36. My disease is stable thanks to doxil, xgeva and a healthy lifestyle.
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CJRT,
I wish I could find a group, the one I went to, I was the only stage 4 person, we tried to get one started but no interest. Kinda sad,cause we really need support but there aren't a lot of stage 4 groups that I have found. I've been having a hard time with it all recently, I'm happy for each day I have,but worry about how many I have left, does that even make sense?0 -
Hi everyone! Things are okay here. My last tumor markers were down by 2 points (in the normal range) so I thought I would have a whole month to relax a bit, but then a week later my lung started hurting and now my hip is aching like crazy. It's a dull ache that is there all the time. I'm so hoping I just injured myself. Pretty sad that the way my life is now a days I actually WANT to have an injury when something hurts, because the alternative is even worse than an injury!
nbnotes - Yay for NED sticking around, I am so happy for you!!
CJRT - have you met with your oncologist yet? I would probably take the node out, but I'm more of a "let's cut everything cancerous out we can" kind of girl! That approach is not right for everyone I know! Let us know what you decide!
Singleton - I have been thinking about reconstruction a lot. It is a hard decision to make because I obviously don't want to be out of commission for a month or more, if I don't have that much time left. On the other hand, I hate the depression in my chest and wearing prostethics. I think I would enjoy having that depression area filled if I could! If I knew I had years instead of months, I think I would do it! I've met my out of pocket max with insurance this year, so I really feel like I need to do it by the end of the year if I'm going to go through with it, so I'm constantly weighing pros and cons! One of my friends on here had reconstruction done after her stage IV diagnosis and she doesn't regret it a bit, so that is swaying me in that direction
crsp34 - Hi Christine! Welcome to the group. Sorry you have to be here, but glad you found us!
amgsc - Hello! I had mets to my liver right off the bat
I understand what you mean when you say that everyone who has known anyone with cancer thinks they understand. But you are right, they don't! I have found that I feel most comfortable chatting about cancer with other people who have stage IV. You just can't imagine what it is like living with a black cloud over your head every day, until you have to do it! Hugs!!tpitre6 - Welcome to the group. I would love to know what you mean when you say healthy lifestyle. I'm always looking at new things to try and I know that term means different things to different people. Do you cut out sugar? I hear that a lot. Anyway, I'd love to hear more about what you are doing. I'm glad you found us!
Has anyone heard of or taken turkeytail mushroom supplements? When I first got cancer, my holistic friend recommended them. I was more worried about chemo at the time, so just kind of blew it off. But I recently read about them again in Discover Magazine and then I heard someone else talking about them. I'm starting to t hink the universe is sending me a message LOL. Just wondering if anyone else had heard about them?
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tweety- makes perfect sense, unfortunately!
brandall- thank you for your feedback. i had my appt today, and my MO explained things in detail and clarified the pros and cons of the options. i have your same mentality- opted for the bilateral mastectomies with NED on MRI and then was happy for the hip replacement b/c it cut out the only known area of disease. sorry you've been having increased pain/discomfort but glad to hear about the TM. fingers crossed for an injury! hugs
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Nancy yES! So glad for you girl..stick around NED!
Brandall, I've been told many times some suplements interfere with tx, so I strongly suggest you check that out with your MO. Btw what is that?? I just heard of it!
Everyone else new, welcome, sadly of of course. Hope you find the info & support here, the sisters are are just awesome! On reconstruction, my standpoint is don't touch it anymore than you have to, but that's me. I had small breasts anyway, so walki g around braless, people don't notice anything anyway. DH is supportive of that as well..such a personal decision really.. hope you both decide for the best for yourselves.
Being the youngest person in the infusion room, it feels crappy yeah! But it is what it is & I pray each time noone younger shows up when I am there..
Just started 8yh cycle of of Xeloda and yes it rocks! the c-buggers have been drowing in this combo, hahaha
hope this stays for long.hugs all, Ebru
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Hi CJRT and tweetyb422,
I'm from winnipeg, MB, and we have a support group for women with mets. We meet once a week. The group is facilitated by two social workers and we talk about everything others don't want to talk about . Our ages range right now from 31-70. So there are a wide range of people in different life journeys, HOWEVER,it is great group to belong to. Everyone just gets it. We laugh, cry,share lots of info, and celebrate together. It is very hard when someone dies, but, we all have each other for support and I have benifitted greatly from it.
I know of someone who started a support group through her social worker in rural MB. Florida has a much bigger pop. than mb, so if we have the numbers to support a group like this you probably do as well. We have about 15 in our group right now. Some prefer online support, I guess I feel lucky to have both..... Just look at all the requests for get togethers on this discussion board and you can understand the draw to be in touch with others in the same boat, so to speak...
Enquire with a social worker at the facility you are getting treatment through. They are the ones who could approach pt's and ask if they would be interested in belonging to the group. If funding is a problem, (which I don't know/can't imagine other than the SW time, is much) you could always look to Susan b Komen or some other fundraiser org, for a grant to start up a group in your area.
PM me if you would like.
All the best,
p.s. not in my thirties now but I was when diagnosed
Diane0 -
Just wanted to say hi. I am new on here. Was part of a group on facebook. But to many people where talking about other people in the group. So it was nice to read some of your comments. I was 35 when I was dx. I have a 8 year old and my oldest will be 16 this month. I have stage iv mets to bone.
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Nancy, congrats!!! Ebru, keep kicking butt girl! Brandall, hope the pain is nothing to worry about. Welcome new ladies. I hate that our group is growing, but we are a strong group. Thankful for the friendship and support.
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Thanks to all of you for the kind remarks! I am excited to say that after my second round of Xeloda I have no more pain in my stomach and back that was giving me trouble due to liver mets. I also have no more pain where my lymph nodes were (I was not able to have surgery due to stage IV diagnosis off the bat). Hopefully that means that I have found a tx that works! I should get the results from my tumor markers next week. There is hope ladies!
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I just wanted to share that I have helped found an organization called Covered with Care that provides blankets/ afghans for people who are younger than the "normal" age for being diagnosed with their type of cancer or who have been diagnosed with rare types. If you would either like to have one sent to you or know of someone that you would recommend be sent one, please go to coveredwithcare.blogspot.com for information or pm me with the information asked for on the blog. We are running on donations for blankets so we can't guarantee colors or how speedily it will come, but I want to avoid sending a pink one, etc. to anyone who is against the color (like I am now).
I wanted to find a way to help others while I am able to, and this can incorporate my new found love for crocheting blankets with that which is helpful. Feel free to share the blog info with others as you see fit.
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Smtray welcome dear. Sadly of course. Well I have an 8-year-old as well. Hope to see as much of his life as possible.
Amgsc, no wonder, Xeloda kicks some serious c-buggers butt for many!
Aic, thanx. Well more good news this month, TM's dropped even lower. I was even astonished it wasn't halved this time (hahaha), just dropped fronm 95 to 78... Only a couple of months before I was at at 2500+, never imagining this could happen.. Hope the same for everyone else!!!!!
Btw I went to waterslides with Ds ( mind you I have too many bone mets) well it was fine all through and he is the happiest little guy right now mommy's "better" 😉.
Hugs, Ebru0 -
Hi all, I read this a lot but never posted. I am from Victoria, BC, initial diagnosis at 38, stage III, IV in 2011. I'm so glad to connect with some ladies who are near my age. I find my concerns and worries are a bit different. Plus, and please let me know if anyone else is having this issue, it gets hard to find people to hang out with! I am fortunate as I have LTD and don't have to go back to work but being in my 40's, most of my friends are obviously working and sometimes the days get so long especially when I am feeling well enough to do stuff. Any thoughts?
Ps I'd give you all the down lo on my treatment history but honestly I try not to think about it too much. I can tell you I'm doing a chemo cocktail, 2 weeks on, 1 week off and doing well with it0 -
welcome to the new ladies. sorry you had to find us here, but blessed to be surrounded by such support!
nb- what a great way to give to others.
diane- thank you so much for the advice. ironically, i walked into treatment center this past week to notice a poster about a new metastatic support group meeting twice a month. i'm glad to hear that your group has been such a positive for you, and i might venture into this new one to see if i can benefit, as well.
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Hi I was wondering if anyone if on tamoxfin? Don't think I spelled that right. Just wanted to know how people are doing on it. I feel my moods are all over the place. Plus I was just started on lupron shots. I am in a stressful job and just don't know how to handle my mood swings. So if anyone has any advice would love to hear it.
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Upfront apology on grammar and spelling. I'm on that pill form of pot.
My 8DS had a blow of tonight were something was bothering him and he wouldn't tell me.
I hate it because I always default to cancer. He's upset about that and I forget he still has a whole lot of other childhood reasons to be upset. I feel horrible because I've reminded him of the cancer by the time we get to him problem0 -
Spam same here. Ds (also 8) is acting weird at times, of course much is due to this crap! They want long haired fit & beautiful mommies aeound who doesn't sleep more than them and oh healthy enough to catch up with their activities! Well on my account I can't do that right now. Today sent him swimming with my dad, he was mumbling I don't wanna go if you are not coming which Crashed my heart. He was also sating the other day I look better this year, maybe I'll join him play in the beach next year, ughhhhh...
Well I will be taking him to Smurfs2 movie sonetime today or tomorrow, along with my box of tramadol, the movie seats are sooo unvımfortable. Or is it my precious butt liking no other than lazboy???
Anyway I liked the idea of pot in pill form, cool cause I can 't ever smoke. Wonder if we have that stuff over here??? Definitely will check on my next appt.
Don't be harsh on yourself, you deal with what you have & he deals with what he has, told by psy.
Hugs, Ebru0 -
SPAMgirl- I have my PhD in Clinical Psych and had worked with kids before my own were born. My kids are 5 and 2, and despite all of the money I spent on my education and working with other kids, I find myself doing the same thing you did. It's normal for us to worry about how this is affecting them and to feel guilty, but just as I have to remind myself, kids are incredibly resilient. Don't underestimate how much simply loving them and being with them, in whatever ways you are able, does for them. Of course our "journey" will affect them, but I like to remind myself that as terrible as it is, it could affect them in positive ways too: they can be more empathic, they can be more accepting and open-minded, more generous, etc. Many doctors and researchers go into fields because of personal experiences they have had growing up. HUGS
smtray- I was on Tamoxifen for about a year. I didn't get major mood swings on that, but I do get one or two moody days per cycle on Zoladex. Awareness can help you monitor whether your reactions are reasonable or are influenced more by the medication. One doctor told me that blood sugar can be affected by these meds, and I've noticed that I do get more emotional and frustrated when I get hungry and my blood sugar feels off. For me, it seems to come on suddenly, so snacking through the day on something with protein has really helped me. Not sure how you feel about another medication, but when I first started Tamoxifen, my MO said that Effexor was good for both the mood regulation and the hot flashes. I did get migraines and hot flashes initially on Tamoxifen but those decreased significantly after about 2-3 months. Maybe the mood symptoms will improve on their own too, if you can wait it out.
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