Just diagnosed and can't cope
Me: 47 yo, with 6 yo girl and 2 yo boy, lights of my life. Had them late which is a risk factor. In 2017, I had an MRI with contrast because of a recurring infection in right nipple. Nothing going on there, but small benign-looking nodes were spotted in left LIQ and right LOQ. Dismissed as intramammary lymph nodes, but was supposed to follow up after 6 months. 4 months later, I got pregnant with my son (after trying for 18 months, couldn't have been happier), followed by 2 years of nursing. I tried to schedule mammos but they told me I had to wait until done nursing. Well, I'm still nursing (just morning and evening) but found a lump in left LIQ end of June. Ultrasound and mammo were both bi-rads 4, and results from biopsy done on tuesday confirmed IDC with DCIS. Don't know much, apparently ER & Pr positive (but don't know percentages), and HER2 negative. The horrible part is a ki-67 of 40%, so prob gonna be grade 3, and increased chance of positive nodes and metastasis.
Sorry, I'm rambling. I can't cope, can't eat, can't sleep, can't breathe. The sadness and fear is choking me. It's unbearable and there's no escape. Is there any help?
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Hi!
I was 46 (almost 47) when I was diagnosed with Stage III, Grade 3 breast cancer in 2014, and I'm still here in 2020. Breast cancer is a very treatable cancer, even Grade 3 cancer. In fact, Grade 3 cancer responds very well to chemo because chemo works best on quickly dividing cells.
Have you talked to a doctor about your anxiety? I had problems sleeping after my diagnosis, and my doctor prescribed me some Ativan to take when necessary. Another option is Xanax. (Better living through chemistry!)
Talking to a counselor who specializes in cancer patients might also be helpful. If you're being seen in a Breast Cancer Center, the nurses there could provide you with a referral to such a counselor.
Finally, don't blame yourself for getting breast cancer. Many of us waited until we were older to have our first children. Many of us were healthy and had no family history of breast cancer before we were diagnosed.
Please be kind to yourself and just focus on taking things one step at a time. I was diagnosed triple positive and my treatment seemed to go on forever (had to do a year of Herceptin). But, active treatment is behind me now, and it will be for you someday.
((Hugs))
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Hi dread2020 - this is the absolute worst part of the journey; knowing you have cancer but not knowing all the information or having a plan. Once you have all your results in and you have a plan, you'll start to feel like you can breathe again. I was diagnosed last year at 41 with an 8 year old daughter and an 11 year old son. At first, the fear and the shock is crippling. I could barely look at my children without crying, thinking about what might happen to me. But the ladies on this site are amazing and I found so much strength from them. You WILL get through this!
Just a word about feeling like you can't cope; when I told my lovely GP that I couldn't sleep and had stopped eating she immediately prescribed an anti depressant called mirtazapine which has been a real life line and allowed me to function well enough to go back to work and take care of my children. In case you're interested, this is one of the few anti-depressants that doesn't interact with tamoxifen which is the hormone blocker you might be taking if your percentages are high enough.
Do you have someone you can talk to? We're all here for you but you're welcome to PM me if you need an ear...........
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hang in there, it's early days yet and there's no signs yet of lymph or distal involvement so don't borrow worries from another day. Hormone positive is a good sign! More treatment options to keep recurrence at bay after you have it surgically removed.
What have you got scheduled next? Scans? Appintment with a surgeon? Once you get a treatment plan set up, it will all feel more manageable because you'll have concrete things to do and get through. We've all been there and you'll see it echoed time and again - this time is the worst. It gets better.
Also - putting on my lactation specialist hat. I'm sorry they deferred your mammo. For anyone else into this situation: lactation is not a reason to be denied a mammogram! The radiologist needs to be experienced in reading a mammo on a lactating breast & if they're not, they should refer to someone who is.
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Thank you all so much for responding, your support means everything! My husband is a rock, and is taking care of both me and the kids at the moment. He really wants me to take something for the anxiety/depression, and lord knows I want to, but I'm still breastfeeding my 2-yo and I can't bring myself to stop now that I know it's probably a matter of a few weeks until I won't be able to anymore because of treatments. But, I might not have a choice, I'm truly falling apart.
And of course I'm driving myself crazy googling stuff, against better judgment. My understanding is that the benefits of HR+ depends on the percentage, which I don't yet know. Especially when it comes the modulation by Pr+ of the negative effects of ki-67 on prognosis. And it's so frustrating to not know the grade (I know the nuclear grade of the DCIS is 2, but don't know the IDC grade), even though that must've been on the report. I harassed the radiologist into reading some of it to me over the phone, but she was very reluctant and I didn't have the wherewithal to get all the pieces. I'm seeing the breast surgeon on Monday 9am, and will get as much info as I can.
A twist is that I do some neuroimaging in my work and have all the visualization software, so now I'm sitting here scrolling through the images from my breast MRI with contrast in 2017, plus one without contrast from February this year. I refused the contrast medium because of breastfeeding and was then told the images were useless without it, but that's not stopping me from obsessively going over them and fretting at every piece of fibroglandular tissue, pretending that I have a clue what I'm looking at. I have heterogeneously dense breasts, so it's really a horror show in there
Aaanyway. I have been through lots of experiences in my life that, in the moment, felt insurmountable, and that I somehow got over. Having you tell me that this is another one of those -- that I'll actually get my balance at some point and feel like a human being again -- is giving me some air.
Thank you!
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I was much older than you at original dx, 8 years ago. I’m still around, doing fairly well. Right now is the worst of time, the waiting. And there will be more, test results, pathology, . You want this all done yesterday. Hang in there, remember to breathe, stay off Dr Google, and your own images searching.
There is light at the end of the tunnel and it’s NOT a train.
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Thank you, Spookiesmom, I want to believe that there is light ahead!
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Dread, I was where you are now almost exactly 3 years ago. 40 years old and KI-67 of 40%. That percentage weighed heavily on my mind.
My lymph nodes were clean. I had chemo before surgery and 2.8 cm of cancer became 3 mm of highly hormone positive leftover cells (not likely to be killed by chemo). I also couldn't eat or sleep, or work, or engage with my family (I had two teenagers, so easier than your situation with 2 little ones, but with their own issues).
I had to take ativan almost every day until I had a treatment plan and the fog and the dread cleared up a bit. I agree with everyone above- you are in the worst of it right now. Take it one day at a time, and use anything that can help you get through it.
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dread2020
I was just diagnosed a few weeks ago. I can tell you that I have already traveled thru several stages. Day I heard, I cried. Next week or so I was quite up and happy and pretty much telling everyone, no big deal, chop them off, and move on with life. Then I woke up one day and realized this was real, not a dream and it wasn't going to go away. After that I had several days with crying jags. Dr. Google didn't help, although if you read the right resources, most of what is out there is pretty hopeful, especially for early stages. My surgery is Wed, bi-lateral lumpectomy. Dr talked me out of going nuclear and getting double mastectomy.
As of now, I am feeling better. Almost all my prep work is done, and I am just ready to get this out of my body, and then move on to radiation.
You will get on the other side of this. Everyone reacts differently. Just hang in there. This is treatable. Once you see the surgeon and have a plan, you will have something to work towards. Just sitting and waiting, not knowing what the plan will be is the worst. If you are not comfortable with the surgeon you see, request a referral to another surgeon. You want someone that you feel comfortable with and who makes you feel like they are going to do their absolute best for you.
TAke care, be kind to yourself, cry when you need to, spend lots of time playing with your kids. That is really the best medicine. My kids are grown so I am spending lots of time with my dogs and horses. Now that you have done your basic research and are literate in the "cancer speak", stay off the internet. There is nothing to be gained at this point.
Good luck to you, keep posting, it helps.
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Thanks for sharing that, FarAway! I've been scanning the boards for some positive experiences with high Ki-67, and it does seem like it's not considered a very reliable prognostic marker for spread (but very good for chemo response).
Thanks also for saying that this is the worst of it, hearing that is like a soothing balm on the wounds that this has carved into my mind. In a way I can't believe it: What if I'm metastatic, surely knowing that will be worse than fearing it?! But in a way I know it's true. When all the pieces have stopped moving, I can habituate to the new situation, and then I'll slowly become a person again. Even now, sometimes I'll chat with my kids, and somehow they always make me laugh. Then I catch myself and think, my god, how can I laugh, I'm in hell. Such strangeness...
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Wow, arabiansrock, I was just reflecting on how surprising it is that I could handle playing with my kids, even though most of the pain of this comes from the thought of having to leave them, but you are so right: it's medicine! And yes, from now on, I'll restrict my internet use to being on this board and getting inspired!
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And fingers crossed for a smooth procedure on Wednesday, let us know how it goes!
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hi Hang in there ok, the first month is torture. I was 36 when I was first diagnosed 4 years ago, my kids at the time were 14 and 2 years old. ,, your kids will give u the strength you need. Hugs.
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Dread - everyone feels this crippling anxiety early on. When you get your treatment plan, you will feel more in control. This was truly the worst part for me. Spookiesmom is absolutely right - there is light at the end of the tunnel and you will get through it! We are here for you!
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Hi Dread,
When I was diagnosed three years ago (September of 2020), my biopsy showed a KI-67 of 52%! (The biopsy had me at Stage 1, Grade 2). I have always thought that score was simply inacccurate since, after my surgery, I was downgraded to Grade 1 and my oncotype score was an 8. I combed these boards for info about KI-67 and one thing that struck me was that many doctors and hospitals don’t even consider the KI-67 score since it is so often inaccurate.
I know how you feel at the moment- I remember feeling paralyzed with fear and anxiety. But I found it so true that once treatment started, I felt so much better and in control. Honestly, I hardly even think of it anymore (and at the time, I thought it would be a constant dark shadow over my life.)
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Dread, I was diagnosed stage IV at 41 within 2 weeks of discovering the lump. I'd only ever known about cancer from TV and they usually die at the end of the episode or movie, I was freaked like you are but once you have a treatment plan, you switch to a let's do this kinda mode. Chemo was so much easier than I thought and I realized I didn't really feel bad, so I got on with living life and having fun. It's been almost 4 years now and I've been through a lot but I'm still here and feeling pretty normal. You can get through this.
PSA: You did not cause this, cells go bad, give yourself a break 🙂
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it’s super hard but try to limit your google research. I try to stick to the research news shared by lumpie the thread is called breaking news from outside breast cancer.org - overall it’s a comfort for me to read all the amazing research that is going on.
The stats will only give you some idea of what is a potential outcome- at the end of the day every body is different.
Those last days of breastfeeding are bittersweet under any circumstances and for it to end due to BC sucks! I hope that you are able to enjoy these precious moments with your little one.
also cancer happens ! You did nothing wrong!Big hugs
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don’t focus on the ki-6. Do you know your miotic rate?did you have clean margins
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Dread, hang in there. Everyone else is right things will get better once you have a game plan. It's not easy by any means and you will still have hard times, but it does get better. I didn't believe anyone when they told me that.
I was diagnosed over the phone as "stage 2-ish" ER+ IDC in February 2018 (age 39) - it ended up being stage 3c, grade 3, ki67 of 95 or 97%! I had chemo first, and lo and behold I had a complete response. My tumor was actually gone, and the internal mammary node shrunk significantly and has remained stable since then. I had a lumpectomy, oopherectomy and radiation, and I found an AI that works for me. While I know I probably won't live to be 90, I am slowly coming to terms with the belief that I have many years ahead of me.
I know you are breastfeeding, but please consider taking something so you can get some sleep and take care of yourself.
Feel free to reach out anytime, and keep us posted on how your appointment goes today!
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I'm so moved by all of these responses, they really carry me through the day, thank you so much! The fact that pretty much everyone says that this initial period is the worst part is tremendously helpful. On some level, I know that I will hit a baseline once I have all the info and a plan, and that I'll somehow be able to find myself again. Right now, though, I'm in this weird dissociative state, feeling like the old me is already irretrievably lost, and desperate to not be this new person whose life is crap.
Gryffinmom and Annabelle2, thanks for telling me about your Ki-67 levels. I finally got the full pathology report from my biopsy, and the mitosis score was 1, so doesn't really seem consistent with such a high Ki-67. Definitely suspecting that one of those is inaccurate (and I guess I'll assume it's the Ki-67
). To the extent that it really is high, I hope that just makes me a great responder to chemo, like you Annabelle.illimae, I see so many people on here that were stage IV De Novo, and that are still going strong after 10-15 years. It's beyond inspirational! In general, Carmelle's Success Stories thread has been a life saver! Also, many thanks to you and 2019whatayear for reminding me that this is not my fault. I don't think I'll every be able to not blame myself for what this is doing to my family, but I'm trying...
Jojo0529, I finally found out about the mitotic rate score and it was 1, so am definitely less worried about the ki-67. On the other hand, I found out that the tubular formation score was high, so wound up with a grade 2 in the end. Didn't do surgery yet, and don't know anything about size or spread, but def hoping for clear margins once they get this out. Leaning towards a mastectomy just to make sure it's all gone, but treatment is still very much up in the air.
Next step is an MRI with contrast (waiting for referral), to estimate size (8mm on ultrasound, but palpable and MRI wo contrast is much bigger) and assess node positivity. Blood was drawn today for genetic testing, expecting results in 1-2 weeks.
Hanging in there, i guess... Thanks again for the support, it really makes the difference!
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I had similar scores - mitotisis =1, tubule formation = 3, nuclear grade of 2, which made me Grade 2 as well. And yes, KI67 of 40%
Pre-surgery MRI is a great idea, it will give your surgeons a lot of information and some clarity, although nothing is 100% accurate. Hang in there, it seems things I moving quickly for you, which is a good thing.
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Hi DreD,
Just wanted to say that my mitosis score was 1, also. When my wonderful gynecologist met with me before I had my first oncologist visit, he told me to focus on the mitosis score and not the KI-67. And, as I said, my grade went from a 2 to 1 after surgery and I had a low oncotype score . So, try not to fret about the KI-67.
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the miotic score is great. I think it’s improved because you can have the highest tubular grade and nuclear grade but still be a grade 2 if miotic is 1
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Hope the mitotic=1 bodes well for all of us! Found a paper that said that low-high mitotic-Ki discordance put patients in between low-low and high-high levels in terms of outcome stats. As you said, whatayear, it's very hard to limit the google research, but I definitely need to stop. Everywhere I look there's a new marker (molecular, cellular, tissue) that pegs me down as good or poor, and up or down I go, accordingly.
In other news I've started eating again. Still feel like total crap, but my body decided that it was done with shock and ready to resume operations. Can't wait for my mind to catch up...
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Hi dread,
I had to access some fierceness in order to cope, and it took a while. But it will come for you, I know, and at least for me it felt right-I felt active instead of passive, instead of feeling the world was dictating to me. Dr. Google--unless you know how to research, look for the most current studies on your particular dx, and know how to read medical jargon--well, let's just say Dr. Google is really unreliable.
The threads, discussions, and information found here are way better, and much more reassuring, too.
I spent the first few weeks reading inspiring stories of those of us who have lived years and years with b.c. in all its stages and forms and subtypes. That helped.
Hang in there-like you, I still find these boards incredibly supportive and positive.
Claire in AZ
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I was diagnosed last May and finished active treatment in Feb. If my phone rings my first thought is still OMG is that a doctor calling with bad news (even if I have not had any recent testing) OR for a fleeting moment I think: Is this my MO calling to tell me it was all a big mistake and I didn't have cancer. The mind is not always very logical. Give yourself all the slack!
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dread2020 I was diagnosed less than 2 weeks ago can definitely relate to fear, panic and overwhelming feelings and worries. It has been a rollercoaster but I am feeling 95% better than I was already. Still waiting on MRI results ( get tomorrow) and the. Surgery to be scheduled. I’m 44 and was also nursing my 3 year old. I stopped the night the dr told me my diagnosis. My little one cried for 2 nights for about 15 mins ( hard screaming throwing self on the flloor, hitting, kicking level fun!) but since then was fine. He was only nursing before bed. My ob dr advised me stop. I don’t if you were?
thinking of you abd sending good thiughts your way.
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dread2020, I was where you are 11 years ago. I had no idea how I would get through all of this and need I say that my mother died of breast cancer. But I did get through and looking back I can't believe all the help that came my way. I had wonderful doctors and the technicians and blood drawers were so nice. I didn't even mind going to chemo after the first few chemos. I would walk away from every appointment and be so grateful that they were nice. You will get through this and everyone here will help you. Prayers coming your way.
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Thank you all for the support! I'm still struggling, but things are slowly getting better. Usually I go through some kind of break-down early in the day -- today the trigger was that my MRI referral got mixed up, but I've settled that now and have the appointment set up for tmrw (which is in itself beyond scary, but good) -- and then by evening, I've worked through the despair and am relatively calm. My poor husband is doing everything right now: cooks, cleans, takes care of the kids, takes care of me, and trying to process his own version of this tragedy. I feel guilty and wish I wasn't so useless, but I just can't seem to find my fierceness. Hoping that it will kick in soon, as you predict, Claire. I can't wait to be where you and Cowgirl are, with the portal into this new reality far behind me. Even being done with active treatments sounds amazing, whatayear, all the jumpiness at the sound of the phone notwithstanding.
Hope you got good news on that scan Ladyc! I know when I have mine tmrw, they'll do a biopsy right away if there's anything suspicious, so I won't have to wait long for feedback (also, as a scientists that does some non-medical MRI, I always make the radiologists go over the images with me before leaving the appointment). I couldn't be more scared of what they might find, but I guess knowledge is power. Between my ob gyn, radiologist and breast surgeon, no one has advised me to stop breastfeeding yet. The radiologist did say that she wants to see me 6 months after stopping breastfeeding, and no longer than 9 months from now, to follow up on a couple of "probably benign" nodules in my right breast. I'm thinking I'll probably have a double mastectomy in the next few weeks, so that seems pretty moot to me...
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Within hours of giving birth to me, my biological mother left me in a hospital in Addis Abeba, Ethiopia. At 10 months-old, after a quick stint at an orphanage, I was adopted into a Swedish family, and left Africa with every hope for a bright future. But, when I was 7, my adoptive father died of brain cancer, and we weren't much of a family after that. I never forgave him for making me an orphan twice, nor for the year of disease progression, during which he was choleric and inaccessible.
My only blood relatives that I know of are my two children, the lights of my life. I fear history is about to repeat itself...
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try as hard as you can to fight going down that rabit hole of fear. You sound like a true survivor and yes you have tramua but you are not your parents, any of them, and medicine is so amazing now.
Do you have a therapist? I have newly got one and reccomend it highly, especially now, but also for all the generational trauma you carry.
Good luck with your MRI.
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