Sad, scared, and feeling alone.
I guess it is time to connect with all of you wonderful people. I have not wanted join because then it would mean this has become real. Well now that surgery is scheduled for next Friday July 5th it is real and I am so sad and scared it is getting hard to focus without crying. I have tried to pretend that nothing is different then before the bx since I had cancer then too, now I just know it. My clinical dx is early stage stage 1a, grade 1, er/pr +, her2 -. At this point I am T1, N0, M0 and I know this can change with the surgery pathology. I am scheduled for a lumpectomy with removal of 3 nodes with radiation to follow. I keep thinking I have made the wrong decision and here is why.
I always knew I was high risk for cancer since my mother had breast cancer in both breast 10 years apart, then colon cancer 7 years later, and finally the biggy pancreatic cancer at age 79. She died shortly after that dx. I never wanted genetic testing because I didn’t want to know. I have annually mammo’s since I was 40 and colonoscopies every 3-5 years, and had a total hysterectomy when I was 42 due to ovarian cysts, fibroid tumors on my uterus, and stage 4 endometriosis. Now 20 years later I have BC. I got genetic tested and low an behold I have tested positive for the CDH1 gene. Look it up it is not good. I have a 50-80% chance of getting stomach cancer before I am 80 years old. The recommended treatment is stomach removal! And 30-50 % chance of gettting lobular ca. What am I suppose to do with this information? My new ca is not related to this gene.
Sorry for such a long post but all of this is finally taking a toll and I just want to wake up and it is all a bad dream. I hope some day I will be able to provide others with the support I know you all will provide me. Thank you!
Comments
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Well, genetics only count for so much. They mean "you might," not "you will." My Mom had breast cancer (as did an aunt); so did I. Dad had kidney cancer; so did I. I got genetic testing and there's no link. It's still a crapshoot.
You have a very early stage/grade of cancer. Unless your oncotype score is surprisingly high, you'll have the lumpectomy and radiation and then go on hormone blockers. Since you've had a hysterectomy, you can get an AI OR Tamoxifen, which is a choice many women don't have.
Good luck with the surgery. Now go out and have some fun in the days before.
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AliceBastable: you are just amazing! Always being supportive with the perfect words. Chapeau!
Topogjo: good luck with your treatment. Don't waste your energy thinking about things that can never happens. HUGS TO YOU
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I too just joined a couple of days ago. Hope to connect and learn from each lady here.
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Topogjo- welcome and sorry you’re here. I had my surgery on July 5 two years ago, so I felt I should let you know you’re definitely not alone. Cancer is some scary sh!+, you have every right to be sad and scared. I had rads too. For some it’s easy, for others it’s brutal.
I don’t know much about the genetics, but I always assumed I would get cancer, it runs strong in my family. Just never thought breast cancer and certainly not at 39! I’m sorry you have that additional worry.
But two years out I’m doing well. I’m not gonna lie and say it’s all behind me and nothing but a distant memory. But life moves on. Things get better gradually. Side effects come and go.
I hope you’re surgery goes well and you sail through rads. Good luck to you!
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Aw, thanks, Yndorian.
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Oh love. We've all been where you are now. We all got through it. I thought the place you are now was BY FAR the most difficult. So cut yourself a break. Let yourself feel whatever you feel. Crying helped me a lot. I always felt a bit better afterward. Like AliceBastable, I too had a mother with breast caner and an aunt. No other cancer of any kind in my family history going back four generations. When I had the genetic test? No link. Go figure.
Take care of yourself right now. Lean on your family and friends, they are there for you. Take that big leap into the surgery, it's scary but you can do it and then it'll be OUT! That is huge. Every new thing will be a new scary, but it's okay. You are going to do fine. Lean on us here as well.
I made the same choice as you, lumpectomy and radiation. No regrets. We're fortuniate to have had it caught early. I'll be thinking of you on July 5th!
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I'll be thinking of you, Topogjo. My dx is similar to yours and my surgery is 3 days later. If it helps, think of me beside you the whole time. Reach out whenever you need to.
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Hi topogjo, and Byumom, I agree with others who have said, the beginning of the cancer trip is the worst! The shock, and the fear of the unknown caused me tremendous anxiety. For the first time in my life, I took Xanax, and it really helped me to calm down the kind of panic attack feeling. Once the treatments started, it was just one foot in front of the other, and get it done! About genetics, no one in my family, that I know of had cancer except melanoma, which I was on guard for. I've been a health and fitness fanatic since my early adulthood. Always working in exercise instruction, and good nutrition. Of all my 4 sisters , I get breast cancer!!! So like my doctors said, it really is random. I had stage 3C, and I opted for mastectomy only on cancer side. I had the full menu of treatments, chemo, surgery, radiation, more surgery, more chemo, blah, blahs blah!😉Anyway, bottom line is, I done with treatments, except for anti hormonal. And I am doing GREAT! You can get through this, it will change you. Cancer changes us all, but it can bring out the best in you! It did me! I have far more appreciation for life, friends, family, everything! I'm doing things now instead of "someday". I'm fit, strong,and healthy! I was diagnosed in 2015, in active treatment for almost 3 years. Throughout, there were plenty of challenges, pain, whining😁, some crying too. Try to keep to your normal life as much as possible. This is a major bump in the road for you but YOU CAN DO IT AND THRIVE!!! Don't second guess yourself, listen to Doctors advice, and the ladies here!! Best ,best wishes 💙💙💙💙
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My sister had BC at 48. I got it at age 51. No one else in our family. My grandmother on my dad's side stomach cancer. .When my sister was diagnosed all they checked was BRCA gene. When I did two years ago they did over 50...nothing. Good news? I guess so,,,but still doesn't explain why I got BC nor does it guarantee I won't get another type. Certainly it's hard to not worry about having a mutation, but in the larger picture, even with BC, most cases have no genetic cause. At least that is what I heard.
You will get through this battle and anything else that is thrown your away. We are all here for you.
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sweetie we are here for you let it all out is the best thing you can do for yourself I had my cry then decided to fight. I was planning our 2nd marriage at diagnosis then I made up my mind to fight with Hope and Positive thinking that I will get thru this. My fiance at time and family were ther to hear me cry and my thoughts.. My faith helped me also to get thru it is possible for inspiration I am now a 25yr Survivor Praise God I'm still here to Inspire. Hope.msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast and the we got married then 7wks rads and 5yrs on Tamoxifen. adriamycin cytoxin 5fu.
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Thinking of you today, Topogjo.
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Topogjo: I am sorry you are going through this but after all you've been through you are one tough lady. But I know being tough makes you tired. I hope your surgery went well today. I was surprised that after my lumpectomy (and it was big) that I really didn't feel that bad. When you are in recovery just think about the fact that the beastie got cut out and that is a huge part of this cancer crap. Take care of yourself cry as necessary use pain pills if you need them and then smile because its done. Don't over do and try not to worry about rads - they are tedious more than anything. Wishing you the best of everything.
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Good luck today Topogyjo!
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Topogyjo: your nickname remind me that little character
Good luck with your surgery and your recovery!!!
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That’s me and it really made me smile to see little topogjo! Thank you all for your support. My surgery is over and I am relaxing and comfortable at my dear friends home in Salt Lake City. I live in a small town in Utah called Moab. I decided to have my treatment at Huntsman Cancer Institute even though it is 4 hours away from my home. All went well and I have the utmost confidence in my surgeon. Will meet the rest of my team at follow up on the 16th. And as everyone has said it is such a relief to have the cancer out even if my boob is sore and swollen. There is no denying it really hurts thank goodness for pain meds. How long before things settle down? I plan to take slow and easy. Let my body heal at its own pace. The good news is they were planning to take 3 nodes but only took the Sentinel node. I think that is good news. Thank you all again so grateful for all of you! More to come...
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Keep pressure on it! Did they send you home in a tight surgical bra? I was told to wear mine for 48 hours. Then I switched to a Danskin zip-front sport bra, and used rolled/folded soft cotton socks to keep pressure on the incisions (tumor and sentinal node). Also ice the boob periodically. Mine only hurt a little the first day or so. I went out to lunch with friends before my 48 hours was up, so I had to find a high-neck top to hide the ugly surgical bra.
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They sent me home rapped with a roll of gauze for pressure. I switched to a surgical bar today and placed the roll of glaze in the bra. My incision is right next to my nipple perhaps that is why it hurts so much. Icing now
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Hope you feel better! Everyday gets better! Rest when you need to and get some fresh air when you can are things I did to help me feel better.
Had my bilateral in 2016 followed by 4 subsequent reconstruction surgeries! Doing well! You'll be back to a new self in no time!
Keep smilin'!
Regards...
PeppermintPatti
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Glad your surgery went well. It's out! Everything gets better from here in my experience. Best of luck in your recovery.
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Glad your surgery went well! My BC is similar to yours only on the right. Keep the bra on as much as possible and use the ice packs. They really help. Just take it at your own pace. I had 15 days of radiation and did well. I worked pretty much the whole time. Had my lumpectomy on a Thursday and was back to work on Monday. Did my radiation at lunch. The support of my family and friends is what got me through it. I also have an awesome medical team! Now I’ve been on a hormone blocker for about a year. It gets better! Just take it a day at a time. We’re all cheering you on!
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Received my surgical pathology report from my BS today. All clear! No node involvement, clean margins, no chemo. What a relief!! Meet the rest of my team on Tuesday for treatment planning.
Also met with the genetic counselor this past Wednesday. That was a very interesting conversation. As it turns out they are still learning about the CDH1 gene mutation because it is so rare. They aren’t sure if the statistic of gastric cancer and lobular breast cancer are as high as the report states and that my participation in research will help them learn more about this gene mutation. All of this will be apart of my tx plan. So grateful to have access to one of the top cancer institutes in the western US at Huntsman Cancer Institute.
I have been struggling more with this gene mutation then with the fact that I “had” cancer ( feels so good to say that). But it finally came to me. My mother had different cancer 4 times starting at age 42 and finally dying of cancer at age 79. That was almost 20 years ago. She always wanted her body to used for research but for reasons I don’t want to get into it never happened. She always felt bad knowing that she put me at risk for developing cancer someday. I am now thinking of this as her legacy. I can now live her dream of providing research for a cancer cure while I am alive, something she never got to do. I know she would be so proud and I can almost feel presence guiding me through this process. It makes it easier knowing she is by side in spirit.
Thank you all again for your support!
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Topogjo: Your results are great! I'm happy for you! The worse part is past, now take care of you. HUGS
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It is been three weeks since your surgery was scheduled. I am wondering how you have made out, and how you are feeling? I am four years out for stage two IDC+. I’ve been through chemotherapy 9 treatments & proton therapy, And after some horribleExperiences with aromasin and exemestane, I am on tamoxifen. I hope you joined a local cancer support group like the pink sisters, and you engage in yoga if you’re able to. I was too depressed to get to know a lot of people and I didn’t join yoga or anything. But now that I spend a lot of time in bed, I start to join the forms just to six of communication from somebody and relief from TV. I’ve been very tired lately but I’m not losing weight. I worry that I have endometrial cancer or cervical cancer or ovarian cancer because of the cramps. I don’t think my doctors know what’s wrong with me. That’s the scary part.
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Well I was feeling pretty positive about the outcome of my surgery. A little nervous about the radiation tx which start on Monday. Met with my team on July 16th and all good. The usual radiation then tamoxifen for 5 years. During my appointment with both the surgeon and oncologist I was told that I was all clear and there was no need for the oncotest because they knew from the tumor pathology it would be low recurrence. But if I wanted to have it done it would give me the confidence to know that all is good. At first I said no but my girlfriend suggested I do it anyway just to know. Fast forward....my oncologist called me Tuesday my oncoscore was 30 which gives me a 20% chance of recurrence and they now want me to do chemo which will lower my chance by 6%. I am devastated. I don’t know what to do. I have an 80%chance of getting gastric ca and 50% chance of lobular be due the CDH1. And now20% of distant recurrence from this cancer that is not related to the gene mutation. I feel doomed like I am a ticking time bomb ready to go offf. I really need someone to help me to understand what this means for my future. It is clear that my doctors don’t really have a good understanding of how to deal with my situation. This stress is killing me. I am not sure how much more I can take
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So sorry Topogjo - I can imagine you were stunned and upset by the score. Despite what’s coming it’s a good thing you insisted on the test. I don’t think I’ve heard a doctor say they were positive about the outcome of the test despite the Pathology findings.
However, my BS was sure I didn’t have any lymph node invasion and lo and behold when the Path report came back there was a micromet in my SN. He was surprised. I was devastated. He said they had to dice and redice to find it because it was small but so what it was still there. Anyway thankfully my MO ordered the Oncotype test and my score was 11. 8% chance of recurrence. 8 years out this month.
Try not to be too undone about the score. Easy for me to say I know but there is a link on this website to survivors with high scores - higher than yours.
I completely understand why you have reservations about your medical team. They don’t exactly exude confidence and that’s what you need more than anything. Maybe get a second opinion?
Chemo is no walk in the park and brings with it horrific side effects but there are countless women who say it wasn’t as bad as they thought it would be. Check out the chemo link on this website too.
Whatever you decide make sure it’s the best decision for you. After all it’s your body and your life.
Good luck.
Diane
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Hello,
I'm new as well. I had 50 year oldroutine breast screening on July 6, additional mammogram and ultrasound on August 1, core biopsy on August 6th, surgical oncologist appointment on August 19th and am scheduled for lumpectomy and sentinel node biopsy on September 18th. I am still in a daze, and have bouts of fear and tears.
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I feel like I cannot breathe. I made it through the diagnosis, the MRI, and then the surgery, and now I am waiting to hear if I need chemo or can skip to radiation. I really do not want chemo, it seems quite unpleasant. Before all this, I was exercising, eating well, not smoking or drinking, and I thought everything was good. I was looking at new jobs (shhh, don't tell my current employer!) across the country, and then bam! Cancer. Really? I am waiting for my life to start again and I can start breathing again normally. I know it will happen, and if I have to have chemo, I will get through it, but man, its a terrible, long ride. Also, I alone except for my dog so that adds to the fun of logistics related to everything. A friend suggested I see a therapist, but right now I see so many doctors, I hate to add to the appointments. It does get better, right? This was more than a rant than I intended...sorry about that!
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Dotty - no need to apologize for ranting. It’s normal and understandable. We can all attest to that.
You will feel as close to your normal self(b4 BC) before you know it. I hope you don’t have to have chemo either. I was able to dodge it with a low Oncotype score. I did do 33 radiation treatments. They weren’t bad at all. I am 8 years out this month
Dogs are a lot of company. I’m a big time animal lover and subscriber to several animal rights causes.
You will be okay. We are here to help.
Diane
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Dottybird, I had a similar surprise following my surgery. I had a micro met in one of my lymph nodes, and my Oncotype came in higher than expected. I was devastated as well after being told that a lumpectomy and radiation would be sufficient.
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Thank you for your kind words and support! I had a melt down last night with a really big ugly cry and realized that it was the first time I actually cried since hearing the diagnosis. Maybe I was actually holding my breath! This waiting is the worst. I try not to become obsessive and look at things on the internet but now I am doing that which is never good, hoping to find a magical clue to my genomics tests. I wish you all best of luck and thanks again!
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