Ladies in their 30s?
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hi ladies. I don't know if I've posted in here before, so forgive me if I'm being redundant. I was diagnosed almost a year ago, at 35, on my 2nd wedding anniversary. I also had just had my first child, a boy named Sam, 4 months prior. I have a unique presentation of cancer as it is small cell with neuroendocrine features. I presented w diffuse nodules in my liver. Did 6 rounds of carboplatin and etoposide. Now on tamoxifen and lupron shot. Scans have been consistently stable with the liver shrinking in size and LFTs returning to almost normal. I get scanned every 3 months. My son is now 15 months old and I intend to be around a long time! I'm just having a lot of anxiety lately and tend to get scared. I am thinking a lot of that has to do w me coming up on my dx anniversary...but I don't know. I am having resentment all of a sudden too. I liked to drink prior to this and now I feel guilty if I have a beer. I feel like I need to be eating and drinking better, but after chemo nothing tastes good except sweets which I shouldn't have! I am having a hard time being in tune with my new normal and am constantly worrying about the cancer spreading, more so than usual. Or of my liver taking a turn for the worse. Again, I think my mind is going back to that dark place a year ago....I'm just not wanting to feel alone!
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I haven't had a dx anniversary yet either and can completely relate to many of the emotions you mentioned. I work really hard on diet, exercise, mind-body, stress-mgmt - all of it. and, I still get occasional bursts of frustration, anger, guilt, sadness, resentment, anxiety and am definitely working on all of those, too. it seems the hardest area for me to improve is the 'don't be so hard on yourself' department. I know an occasional 'cheat' on diet, exercise, etc. can't possibly do me harm, but the crazy self-judgement when I do cheat is pretty wild. I am getting better about this - slowly, very slowly.
I feel like there is a lot of mind-f*ck involved in this disease. I am beyond-words-grateful that I have responded to treatment, but I'm in an odd place. I'm fine - healthy and good (unbelievably), but still feel about the same as when I was on chemo (granted, I had a very easy ride, but 4 months later & things have not improved). while I have figured out ways to manage my SEs, they still make me feel very much unlike myself.
Everyone (including me) expects that I should be ecstatic and jubilant at having such a great response, but I'm more shocked, tentative and feeling cautious about celebrating. I try to keep on my "happy face" to minimize unwanted discussion (also good for making others feel better and especially good for enabling my loved ones to feel happy) and am trying to just not over-think it and live.
but, I'm struggling a little. aside from natural concern about progression/recurrence - I still feel "unwell"/not myself in my head, in my body, and in the mirror. scans/docs say I'm great, people say I look great, but I don't feel great. I'm wondering if this ever goes away. I also wonder if it's maybe the conflict of expectation and reality that fuels some of the negative emotions (hmmm, sounds like fodder for a therapist).
maybe someone who's been in the stable and/or stable still w/ lingering issues from dx or tx can chime in.
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I am sorry if this discussion should take place elsewhere. Please let me know & I'll move it. I can't imagine how asinine this must sound to others. I just really don't know who else might have insight into these issues and I've learned so much here. I hope I haven't offended/upset anyone.
another bizarre aspect of this - specific to the younger crowd -- outside of here, I don't know anyone who has gone through something like this (read: been where I am now). no one I know knows anyone who has gone through something like this. people I've been introduced to who have gone through something like this are much older and at very different places in life, love, etc. I know it's impossibly difficult for everyone with our dx, but I feel like being the 'alien' in every circle makes it especially isolating and confusing.
how do these posts always end up so much longer than I intended? I think I need to start talking to the dog & cat.
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spicy--you hit the nail on the head with your entire post! I would be one of the stable for 20 months now...I look great...I don't feel great though. I don't know if I will ever adjust to my new normal. I am a changed person. And very much alone. I grieve my old self. My mind is not as sharp or focused. My body is not the same. I slap on a smile for everyone's sake. Sometimes I am truly happy, but cancer is always on my mind. I struggle with being hopeful and the reality of the situation. I wish I had something novel to say...we just have to be here for each other because we are the only ones who truly get it.
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thank you for your replies. I spoke too soon about stabilization. Had a CT this am and they found 4 punctate spots in my spine. I have a PET scan to confirm tomorrow afternoon. I'm trying to keep it all in perspective. These are extremely small, were caught early, and there is NED in any other organ while my liver is unchanged. Dr is going to decide the course of action based on tomorrow's scan. I had a small meltdown, but trying not to let it dissuade me. My son's dressing up as a monkey tomorrow for school and bc of my test, now both my husband and I can see his parade! Do any of you have bone mets? What has worked as far as treatment?
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SpicyTuna- Glad you're doing so well. You hit the nail on the head. I'm three and a half years out. May you have decades of stables. My nurses keeps telling me how much I am like another patient my mo has. I get these little fires. We put them out, wait until the next one. She's been on herceptin for 14 years and still going strong. 😊Herbert1- I'm a bone Mets. Herceptin, perjeta, and xgeva, lupron. I got two years out of that regiment. I'm on break from perjeta and have now added faslodex. They recently found a few 4-7 mm growths in my lungs. I call them my pearls since I worked in fine jew. MO isn't too worried. They're growing so slowly so he's tweaking things. I haven't had any bone mets in these last two years. They completely resolved after some rads to the affected area. He's dropping perjeta to lower my toxic load. It's been nice having a normal stomach.
I was 37 @ dx and my little guy was 5 months. I totally get your fears and frustration. He is about to turn 4. It's amazing what our meds can get us. Cancer sucks. I take celexa to keep me from going to the dark corners of my reality.
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spicy- the key word for me was 'alien' . Thats how i feel. Although there are quite a few of us s4 young ladies here on the boards there are not a lot in our local areas to identify with. On the outside i look great, i can plaster on a smile in order to be around the other moms when i am at my kid's school, but they dont see the struggle going on internally. Pain we mask, days we're down and out.
I keep wanting to go to a support group meeting for those with s4 in order to connect but i never have the time.
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Just diagnosed yesterday, Stage IV +++ IDC with mets to liver, spine, & chest wall. 33yo with a 22 month old daughter. First clinical exam related to this was 2 weeks ago yesterday. Located in North Alabama and just kind of lost in these message boards & groups!
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I know I get lost in them too! I'm so sorry you are going through this now. I'm sure your head is spinning!!! I'm coming up on my one year cancerversary. My cancer has spread to my liver as well. I hope you aren't in a lot of pain. I was and once treatment started I felt better relatively quickly. Granted, chemo is no fun, but it was good to feel like I was killing the cancer! Like you, I have a toddler. Do you have support? Someone to help w your daughter? You will be exhausted and will need help...I had a lot of guilt that I wasn't being a "mom" during treatment, but in reality I was fighting to be there for the long haul. And please don't let the "stage IV" label suck too much energy out of you. Treatments have come a long way...and we are all here to support you in the dark times.
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hi all, I'm 38 (My two girls are 3 and almost 5) was originally diagnosed at 37 with stage 2 DCIS er+ pr+ HER2-, had lumpectomy and node removal (2of 3positive), chemo (AC the Taxol), 7 weeks radiation then on tamoxifen. Was feeling great, taking care of myself, had side ache this December they thought was appendicitis that turned out to be liver mets. Am now on xeloda and having hand foot side effect (which if anyone has advice on how to deal please share). I've started a radical shift in my diet to see if it can help "starve" the cancer and make life easier for my liver. I had so much fear and anxiety but am starting to feel a bit better, much more positive and strong outlook for the future. I'm waiting for foundational panel results in order to determine clinical triaL options and am antsy for second opinions and targeted therapy opportunities. Again if anyone has advice on 2nd opinions please let me know. Sorry for the long post, first timer, and apologize if this isn't the right spot to ask these questions Am so glad and encouraged by having this forum and all of you!! Take care!! Thank you all for being here!
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Hi Mjy5876, welcome to Breastcancer.org. We're so sorry for the circumstances that bring you here, but we're very glad you've found and joined this wonderful community full of information, support and encouragement.
There are many forums where you can post among which you'll find the Stage IV forum. If you want you can post also there, introduce yourself and connect with other members with similar diagnosis to yours.
We hope this helps!
The Mods
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Hi Mjy5/8/76!
I'm sorry you have to be here, but glad you found us! This place really saved me at the beginning of this journey. I came here with no hope and in a bad mental place and now I'm not on here that much because I'm out living life
My story is similar to yours. I was 36 at diagnosis, but my liver mets were discovered right after surgery and before I had chemo. I'm now 38 (39 in a week!) and I have two little kids who are 8 and 5. I think a second opinion is always warranted. I had a second opinion early in my treatment within the same system (I have Kaiser) and ended up changing to the second opinion doctor because I felt his personality suited mine better and he seemed to have his ear to the ground regarding clinical trials. I then at the urging of my oncologist had another second opinion appointment with the local University research center because he knew there was a clinical trial there that I would qualify for. I am now being treated out of the university and am on a clinical trial with palbociclib (a new drug that is currently seeking expedited approval with the FDA). I haven't been on Xeloda yet, but I think there is a thread specifically geared for drug on here that might help you with side effects. Good luck on your journey and you are in a great place to ask questions! I can say that I was scared and feeling hopeless at the beginning of my stage IV diagnosis, but as time goes on your brain can't say in that scary place, so it is easier to feel hopeful and happy. Hugs to you!0 -
mjy--glad you found this site. Just FYI this thread is not very active anymore...don't know why...it's very helpful. Welcome and sorry you are here. I was 34 when diagnosed with a 8 and 1 1/2 yr old. It gets better when there is a plan in place. Us young mothers, I think we dig in extra hard and fight like hell because our kiddos need us. It seems extra cruel and unfair. At least those are my thoughts. We not only worry about ourselves, but we now have to figure out how further protect our kids. I started a thread for moms of school age children. It's also not very active, but you can read thru it and see what others are thinking/feeling and maybe pm someone if you feel led to do so. I know you have already been thru cancer crap before, but this is different. It is definitely a roller coaster ride. Hold on tight. Life can still be good. Not the same, but still good. We are here with you!
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Kasi...
I miss you. I miss your flowing black mane of gorgeous hair.
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I'm 33, too. dx with mets to lungs and brain this week.
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Was diagnosed this week as Stage 4 too. Single met in my lung. I am 32 with two little girls (ages 4 and 20 months). I am so terrified but am trying to remain positive. Reading about others who have been NED for years is encouraging, but its the statistics that are hard to overcome.
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Welcome brookezine and grahaad1. So sorry you have to join us, but you'll find there is an amazing group of young women who understand what it is like to get this diagnosis so early. I haven't been on the site in a very long time, so I plan to read through and catch up on how everyone is doing. Brookezine...my children were about the same age as yours were at my mets diagnosis 2 years ago - my daughter was just shy of her 5th birthday and my son was 20 months. After the initial shock, terror, anger, etc., we proceeded with treatment (just six months after celebrating thinking the early stage BC was behind me). It's now been 2 years and 2 days, and I am feeling well and living a relatively "normal" life and am grateful for every minute of it. I have met some amazing women, both on this site and in the "outside world" who are juggling this diagnosis with work, relationships, children, etc., and continue to give me hope. The initial month or so following my diagnosis was the most difficult for me thus far, so I hope that you'll find things getting easier emotionally as you formulate a plan and feel that you are moving forward. Wishing you peace and support.
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welcome Mjy, I started Xoleda yesterday (tiny spot on lung).
I joined the Xeloda forum which is on page two (at bottom) of the stage 4 section. Lots of great information! Hugs!!
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Hi I am 35 years old and was diagnosed at 34 years old with what we thought at the time was Stage II triple negative breast cancer with no lymph node involvement. Now just in the last couple weeks, I find out that a 6mm lung nodule was there the whole time and was mets. So now Stage IV NED after having the lung nodule removed. Anyone else here have that happen? Just one spread to one spot? I am hoping that is good news. Anyway, the mets is also triple negative so my onc is looking into targeted gene therapies that I may be able to participate in and then I will start 4-6 rounds of Gemzar/Carboplatin. Anyone have experience with that? It is a preemptive strike as I am currently NED and we are trying to be as aggressive as we can as I am only 35 years old with a 2 year old daughter. I appreciate everyone's stories as I know I am not alone. I cannot lose this fight and I will not lose this fight. God willing, I will be one of those rare people that remains NED. I hope we all are and we find something to kill this mofo.
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gilmel01- I was diagnosed in January with a single TN lung met as well. I had surgery to remove it and am now on halaven for 6 cycles. Am interested in hearing more about the targeted gene therapies you are looking into.
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Grahaad1 nice to meet you! In that we would orefer to have met in any other way for any other reason like our children. I will definitely let you guys know when I hear. So it sounds like you are NED as well. Here's hoping we remain that way.
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Do you know why they are using Halavan on you?
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Hi - I see this post is old - but I thought what the heck. I am about to turn 40, but was diagnosed with Stage IV invasive ductal carcinoma in June 2013. I had mets to my bones, which have all been healing nicely. I just found out 2/13/15 I have lesions in my brain. Just finished 10 treatments of whole brain radiation...would love to chat with you!
Ann
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Gilmel01 Following removal of the lung met, my oncologist gave me two choices. The first was a wait and see approach (which she actually said is what she would do) or chemo. She said a small study did show benefit to chemo following surgery. I decided to be aggressive because I have little ones that need me around for as long as possible.I think she selected Halaven because it is generally tolerated well compared to other chemos and showed the most benefit with TN patients.
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Ann - so sorry for all you have been through recently. Do you have kids or a job? How are you coping?
Grahaad - I am going to ask my dr about that one. From what I understand, we may change my course of treatment based on the genetic profile of the lung tumor. Where are you located? We appear to be in a similar situation. I live in the Washington DC metro area.
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hello!! I'm 37 and was diagnosed with stage 4 breast cancer back in September 2014. It's nice to meet you, but sorry for the circumstances. At least we know we aren't alone.
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Gilmel01 - I live in Illinois. Doing okay so far on the Halaven, just tired. Let me know what you and your doctor decide for your treatment.
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Hi Grahaad1,
I have stage 4 breast cancer. I did 8 episodes of radiation first, and have my 5th chemo 18 March. I'm on Herceptin and Perjeta, along with taxol. This treatment seems to be working well for me. I haven't noticed any negative side effects, yet. Thanks for responding, and good luck to you also!!
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Hi, I am another newbie here. I am 38 and dx'd with mets to bones, liver and lymph nodes while pregnant. Did one Taxotere while pregnant, delivered baby 7 weeks early/simultaneously had ovaries removed and have now been on aromasin, faslodex and xgeva.
Nice to meet some other young women in the same boat . . . .
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JFL,
I'm so excited for you! I have a 15 year old daughter. But I've always wanted another child. I'm happy to hear your story, since it seems we have a somewhat similar dx. Did everything go okay with the pregnancy and the baby? I'm so excited at the prospect, but I know I am 37, and time is ticking! Please let me know how yuns are doing! So glad to hear from you!
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Hi Allyme! Baby is doing great. He spent four weeks in the NICU due to prematurity but did very well considering the circumstances. He is home now and a has become a healthy, big, chubby baby. He is my first. I go back to work next week. The maternity leave went by so quickly!
The only complications I had with the pregnancy were cancer-related. The pregnancy masked my symptoms so I let things go much, much longer than I would have otherwise. Nearly all of my symptoms could be explained away by having a difficult pregnancy. I had a ton of pain in my hips, groin, lower back, ribs and sternum. In the end, some standard blood work revealed hypercalcemia and led to my dx.
I know what you mean about wanting another baby. I do too. Before dx, I was already planning on baby #2 . . . . now, I just feel so fortunate to have one healthy, beautiful baby.
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