30 years old large lump found
Comments
-
Smichaels11: I'm so sorry you've joined this club. None of us wants to be here, but you will find a lot of support, information and genuine caring. We all sat in that chair or on that phone call when the world just seemed to stop. Cry as much as you need to, then get some of those meds so you can sleep and be there for your family. There is a lot of information that will be coming to you in the weeks ahead and nothing will seem quite real. But soon you will know more about what your are dealing with and will have a treatment plan. That will provide some steadiness. And then you will start your treatment, which finally allows you to focus all your energy on doing something. The waiting part is really hard, but you will have a team taking care of you and lots and lots and lots of support on these boards. (And you will also find those stories of people who have moved on, quite successfully--including some who pop back every so often to say hey.) The only thing you have to do right now is breathe and whatever allows you to take care of yourself during this time of anxious waiting.
0 -
My cousin's grandmother (no relation to me) was diagnosed in her 20s back in the really old days. She did whatever treatment was available back then, and fortunately did go on to live into her 80s. I know it's just one story, and I know there's a lot of scary information out there, but I hope that helps you know that many young women DO get through this and live a normal lifespan.
0 -
This is a tool that many of us use to evaluate (generally) how treatment can affect long-term survival.
https://breast.predict.nhs.uk/tool
When I fill in my diagnosis and my treatments, it says that I have an 82% chance of surviving 10 years after surgery. However, you don't know the details of your diagnosis yet, so it won't be helpful for you.
((Hugs))
0 -
Also, there is the possibility for the invention of new treatments.
Say we survive the next 10 years on current treatments - who knows what else might be available to us in the future?
I think there will be better treatments one day, and I hope they come soon enough for us to benefit from them.
0 -
I'm so so sorry. I am here if you need to talk to anyone or if you need anything else.
0 -
Smichaels, here is some information that you might find reassuring. It's not specific to your diagnosis, since you don't know your diagnosis yet, but represents an average for all invasive breast cancer cases in the U.S. It's the SEER survival data.
The thing to remember with survival data is that we can only know the 20-year survival rate for people who were diagnosed 20 years ago - or a few years earlier than that actually, since it takes a couple of years to accumulate and tabulate all the data. 20 years ago, many of the treatments available today either were not yet on the market, or not yet widely used. So when you look at the most recent 20-year survival figure, 74.6%, you have to consider that this is for women who were diagnosed in 1997. The 20-year survival rate for women diagnosed today will be higher because we have more and better treatments. You can see this reflected in the 10-year survival data. The 10-year survival rate for women diagnosed during 1975-1979 was 62.5%. For those diagnosed in 2007, it is 86.2%.
I've highlighted the 10-year, 15-year and 20-year survival rates on this chart. The SEER data actually goes out 30 years but the 30 year data isn't very relevant since it reflects people diagnosed and treated such a long time ago. And the reason the data only runs out 30 years and not 40 or 50 years is simply because that's when they started collecting this data - some women have survived this long.
0 -
Ugh I just want the cancer gone and never have to deal with it again. Seeing statistics show that may not be the case for me at such a young age really freaks me out. If I have a double mastectomy is there really a chance it could come back? I'm sorry for so many questions, I am just in shock and trying to rationalize what feels like my death sentence. I dont want to lose my hair, become sick, and then that's my life.
0 -
Not to be a Debbie Downer, but yes, breast cancer can come back after a double mastectomy. First of all, no surgeon can get all of the breast tissue so there's that. Secondly, cancer is a systemic disease not a localized one. Since your cancer is invasive, there is a chance of cells breaking away from the initial site and traveling throughout the body via your bloodstream and/or lymph system. That is how cancer takes up home in new sites (liver, lungs, brain, bones, etc.). The purpose of systemic treatments (chemotherapy, targeted therapy, and hormonal therapy) is to address the microscopic cancer cells that have left the original site and may be circulating throughout your body.
I lost my hair but worked through chemo and radiation. I'm still doing well, almost six years later. So, being sick hasn't been my life. ((Hugs))
0 -
There was a quote I read at the beginning of my diagnosis and it said " Statistics are information, not condemnation" and I really held onto that. I was diagnosed at 30 with oligometastatic breast cancer, de novo. It was shitty to be frank. I had a three year old at the time and I was afraid I was dying right then and there and my son would never remember me. I'm almost two years out from diagnosis and still doing well ( currently NED for the last year). My medical oncologist says I don't fit into any box and my former rad onc said I was non sequidor which means "does not follow" I"m not following the typical course of someone stage 4 , so they say. Stats tell us that women at stage 4 have a 2-3 yr survival rate, and that is not me at the moment.
I know others who are stage 4 and have been for 10 years. Now I'm not saying this to say you'll be diagnosed that way, but I'm showing you that it's not always a death sentence. That stats don't mean much of anything these days because as others have said, stats are based on old information. There are new therapies everyday that are saving many women, that were not available 5 years ago.
So do your self a favour and stop looking at stats
take a breath.
The first couple of weeks will be hard but once you have more information and a plan in place, I promise things will get easier. You'll have rough days, but you'll bounce back. I live fairly normally. I'm very active in my life. I have some fatigue but I'm a mama in menopause :P
take everything day by day .
0 -
I'm sorry you find yourself here, it's not something a 30 year old mom should be doing. It's not something anyone wants to do!
I wasn't quite as young as you when diagnosed, but I remember thinking exact same thing about 5 year statistics: "what"s 5 years when you are 40!" I remember looking into my teenage (13 year old) son's face, trying to imagine how he would look as a grown man, thinking I would never see him grow up.
It's going to be tough, but you will get through it. In fact, I remember after 3-4 days of despair, I came up with a mantra "I will get through it". I repeated it endlessly, just to occupy my brain with something other than cancer. It is true - you are in the hardest spot right now: you've been dealt a blow, but haven't been given a hand to help you up. It will come. It's going to get easier once you have your treatment plan.
The first person to tell me that was my friend who was diagnosed at 40, just like me. Only she is 11 years older, and she is 14 years cancer free this year. She had 3 kids when she was diagnosed: 9, 7, and 2. Then 9 year old has masters in education and is teaching, he then 7 year old is going to be senior in college, and then 2 year old is going to be a HS junior. There is so much life ahead! Her story always gave me hope. You will find someone to be your guiding light in this crappy "journey", it may be on this site or somewhere in real life.
Reach out via DM if you need to talk. Sending you warm hugs.
0 -
I had my appointment with the surgeon today. I have stage 1B grade 3 triple positive. I will have chemo, a double masectomy with reconstruction and possible radiation. The doctor seemed really upbeat and when I admitted how scared I was about dying young, she assured me this is not something that it going to kill me. I will have a long and happy life ahead of me once I get through all this bullshit. It made me feel better for the first time since I felt that lump. Up next are weeks of scans and lab work, and then onto having the mediport inserted for the chemo. I am not thrilled about it, obviously, but if it's going to kill what is trying to kill me then I'll do what I gotta do.
0 -
I had triple positive cancer as well. Did chemo, surgery, radiation, one year of targeted therapy (Herceptin) and am doing ovulation suppression (OS) + hormonal therapy (Aromasin) for seven years. The thing to remember about triple positive is that it's a marathon not a sprint. Please come by the Triple Positive Group thread! It's full of knowledgeable, helpful women.
https://community.breastcancer.org/forum/80/topics/764183?page=1290#idx_38694
Also, it will be helpful if you join the chemo thread for the month you're starting, like Starting Chemo June 2020.
https://community.breastcancer.org/forum/69/topics/876455?page=1#post_5557938
((Hugs))
0 -
smichaels - since you're HER2+, I assume you're going to have chemo first. That seems to be standard now.
Before you have your port installed, draw a line on your chest with magic marker where your bra strap sits. It's so much easier if the port isn't right under that strap & rubbing all the time. You can also usually have some placement choices so it doesn't show with lower necks.
If you ask for a "power port" it can be used for everything. In addition to the chemo, they can insert the contrast for all the scans and take blood when needed. I was really happy with my port. Elaine has given you some great information.
0 -
Thank you for the suggestion about the bra strap! I see based on your info that you have been through this storm since 2013? How do you feel now? Do you fear a return? Ugh I tried to read through some of the triple positive material and it freaked me out. The doctor made me feel so much better but now I feel like it's a death sentence again.
0 -
smichaels - as others have said - stay away from DR. GOOGLE. You apparently don't have a staging yet, but your doc is right. The chances that you'll come through this with flying colors and eventually be able to quit thinking about it are staggeringly high. Find some things to distract your mind. Yeah - easier if we hadn't already been staying at home & have used up lots of options. But still - limit yourself to reading & researching for only a short period of time each day and otherwise trick your mind away from thinking about cancer.
0 -
Stage 1B, grade 3, triple positive is what I was diagnosed with. Is that the staging you mean?
0 -
Yes m'am. Your doc is right - you have a long & happy life ahead. When you get the time, go to 'my profile' and fill in your diagnosis & treatment plan to date. You can update it later w/specifics. That way it prints below your posts and people responding can see the basics.
0 -
Smichaels,
Stage Ib is an early stage diagnosis - that's good. The thing with triple positive is that while HER2+ cancers can be aggressive and used to have a worse prognosis, that's no longer true because there are more treatments available for triple positive cancers and these treatments are so effective that they have turned what used to be one of the more concerning cancer subtypes into a cancer that now has among the best results. This is why you have to be very careful about what you read, and why my earlier caution about how treatments have changed over the years, improving survival rates, is so important. HER2+ cancer today is completely different than HER2+ cancer before Herceptin was available.
At this point you've only had a biopsy, correct? And your lymph nodes have not be biopsied? Sometimes the preliminary biopsy staging changes after surgery - there can be good surprises (a smaller than expected tumor) or bad surprises (positive nodes). However since you are having chemo prior to surgery, the chemo will hopefully shrink down your tumor anyway and so your doctors may just assume Stage Ib moving forward rather than provide a revised/final Stage after surgery.
0 -
Smichaels11, I am so sorry you have to go through this. Please know that we are all here for you and you will get through this. I was diagnosed 11 years ago and I was terrified. I stayed away from google and and took it one step at a time. I didn't do any research--I just showed up at my appointment with the surgeon and took my sister with me. I tape recorded my session (with the permission of the surgeon) and that took a lot of pressure off. As I look back I feel so lucky that I had a wonderful surgeon, oncologist and radiologist and I was comfortable with each one of them. Take it one day at a time and do look into some meds that will take some of the terror off. Prayers coming your way.
0 -
When do you stop worrying that it will come back? I have this nonstop feeling of doom that I cant shake. I want to KNOW that I am done with this and can live the rest of my life, but I can't help but feel like I'm getting lip service and its actually going to kill me. I guess I have to accept that a short life span is what I've been dealt. I read these posts and these wonderful women are active in their responses and then I see that they haven't posted for years. Did they die? Did they just stop posting and live happily ever after? I'm sorry, I am just a ball of emotion. I am a control freak. And I feel like there is no control. I just feel like what I cant reconcile is whether or not this is a death sentence or just a shitty year I have to tolerate. And that scares the hell out of me. I apologize, I know I'm all over the map.
0 -
Smichaels,
Some breast cancer patients who don't post anymore have passed away. (There is a thread remembering them.) But, most women who no longer post have moved on with their lives. I'm still here because I'm doing ovulation suppression and Aromasin, and I like to follow the OS + AI thread. I also check in on the Triple Positive Board because familiar faces pop up there from time to time.
Can my cancer come back? Sure, it can. But, other than exercising, eating well, and doing OS + AI, there's not much I can do about it. Remember the serenity prayer? "God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference." For me, I cannot change the fact that I am living with uncertainty and I just have to accept it.
I will say this: the further I get away from treatment, the less I think about cancer. Yes, you may have a crappy year. But, once treatment is over, life will go on.
You have a number of things going for you -- you're early stage; you're young; and chemo works best on Grade 3 cancer. (I was Grade 3, too, and my lump just melted away during chemo. By the time of surgery, I had no active cancer left in my breast or compromised node.) ((Hugs))
0 -
smichaels, I am only a little under two years into this and am not yet at the point where I don't think about breast cancer fifty+ times a day--I can't lie. I am also HER2+, so the treatment is longer and I'm still on an oral medication called Nerlynx, so I have that daily reminder along with the side effects that go with it. But I can tell you this: when I was at your point, just like you, I really wasn't sure I'd be around in two years (my tumor grew very, very quickly--exploded in size--right after diagnosis). I had a complete response to chemo and I am grateful. I have battle scars, collateral damage to my body, but cancer has made me even more grateful for my life overall. But I wouldn't have chosen this path--like you, it was forced on me!
What I will tell you is that the shock of the diagnosis, until you are actively doing something about it, is the hardest part--exactly where you are right now. It gets better when you are undergoing treatment because you are doing something! You should be encouraged about what Beesie said to you earlier: in years gone by, women with HER2+ cancers had some of the worst outcomes and now we have some of the best. I am not just being a cheerleader here and telling you what you want to hear. A stage 1 diagnosis is about the best you can have if you have invasive cancer, and now your job is to start chemo and start treating this systemic disease that starts in the breast.
To your question about the ladies who seem to have disappeared, a great majority of the ladies who were in chemo when I was no longer check in much at all, and some have left entirely. The great majority of women come here during treatment and at a certain point they drop off, maybe only coming back to rejoice over an anniversary of having no evidence of disease. There are women who've been around a long time who stay around to encourage women who've just been diagnosed and are feeling just as you do right now.
0 -
Thank you, I really appreciate you taking the time to talk me off the ledge. To know that these women are not just dropping like flies but rather moving on with normal lives after treatment makes me feel better. I know I will never be the same, but if I can get through this treatment and live a normal-ish LONG life I will be very happy. Its disheartening to see people beat "easy" looking cancer and have reoccurrences freaks me out, but I am hoping they are exceptions and not the rules. I fully plan on having a double masectomy and ovary removal, so if that can ensure this will be gone forever I will be one happy young woman!
0 -
Smichaels11
In 2008, I had endometrial/uterine cancer and a very thorough hysterectomy. I joined an online support group and was pretty active on it for the first month or so. But after I went back to work and resumed my normal life, I gradually drifted away from that online support, and completely dropped out after about six months. With this group, I've stuck around for two years for a couple of reasons. One, the follow-up treatment continues after surgery (not really any follow-up after a few exams from the oncology gynecologist surgeon who did my hysterectomy, because that egotistical dick told me, "Go home, I have cured you!" Found out later that the standard of care was quite different. Grrr.) Anyway... two, I'm retired and have the time to hang out here, plus I've gotten attached to some members here. But if I was still working, I'd probably have moved on after a short time, maybe just checking in occasionally. And some of us veterans stick around to keep you newbies from freaking out!
0 -
You are amazing! I am definitely a newbie who is freaking out and having a veteran tell me I am going to be okay is better than anything anyone can tell me right now. Being only 30, my friends are still getting married and starting families. They dont understand what I'm feeling and I hope to god they never do. I had plans to start grad school but put it off thanks to this nonsense. My mom passed 5 years ago to heart failure so I've been navigating a lot of this based on these message boards and much older coworkers who had "better" breast cancers without chemo. Noone with first hand experience. And my 5 year old likes to talk in future tense if that makes sense. So he always wants to talk about next year, next birthday, next Christmas, etc. and I have been feeling so defeated lately that I feel like I wont see those days anymore. Reading up on Christina Applegates story has been cathartic, strangely enough.
0 -
Smichael11
I'm one of the oldies who has come back to say hi and to say, 'You've got this!'
I was also in my thirties when I was diagnosed, and this was pre-family and pre-marriage. I was single at the time.
I'm now nearly 13 years down the line and doing well. I'm married to a wonderful man, and have a 19-year old stepson. Chemo sent me into an early menopause, but hey, I'm here and grateful for it, as much as I'm sad that I couldn't have my own. I own a beautiful and really cute little Poodle, who I treat like a child. He's adorable and the other love of my life.
Once you know your full treatment plan and start your treatment, you will feel better about things as you'll feel more in control.
Take care.
Ruby (from the UK)
0 -
Thank you for sharing. I keep going through moments of "I'm going to be fine" to "I'm going to die." How do you get over the constant fear?
0 -
How do you get over the constant fear? It just happens with time. And it happens when you start to feel that you are doing something positive to attack this §~&*# sucker!
It's so soon after you received the diagnosis, and where you are in the process is the worst. Receiving a cancer diagnosis is a kick in the gut and a huge shock to the system - anyone would be shaken by it. So now you have a diagnosis but still have lots of questions, and you haven't started any treatment. It's really not a fun place to be. So know that how you feel is normal, know that it will get better as things move along, and be kind to yourself and take care of yourself. Don't put pressure on yourself to feel differently - that will happen on it's own - but do what you can to enjoy yourself and distract yourself. Having a 5 year old probably creates lots of opportunities for distraction!
0 -
SSmichael11, I'm really sorry for your recent diagnosis. Mine was last November, and I can certainly relate to how you are feeling. The panic moments... One moment it can be so daunting, and the next, not the end of the world, just bad luck and a tough life challenge, but nothing insurmountable. It is a rollercoaster ride of emotions for sure and a great life disturbance. But not all change is bad. It also provides an opportunity to find deeper meaning in life, to develop a profound appreciation for yourself and people around you, for the beauty and fragility of life. You can amaze yourself at what you can come to accept and surmount. In a way, it is a journey of self discovery (even though it is forced upon you, and you could have done well without...)
I have a 4 and 7 year old, and they are my life force to get me through this. Their presence and unconditional support really help me make the best of it. it's hard to accept I know. I wish you well. Don't hesitate to contact me by private message if you have any questions or need to vent.
0
