Scared and alone. Please help.
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thanks. I know. My tumor is big but the size is confusing. It says the mass is 3.5cm but the disease extends to 5.3cm. So I’m just going to say that it’s probably bigger than 5cm. I’m hopefully getting an mri next week
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So I am brca and did mammogram and mri screening. I paid very close attention to birads and when my screening hit birads 4 I sought a surgeon to complete my prophylactic masectomy. They don't give a birads 5 out light. This is the criteria for a birads 5 rating....atlas defines category 5 assessments as appropriate only for lesions that are almost certainly cancer, with a positive predictive value (PPV) of ≥95%. This said I have had 2 cancers and I've learned something. While you are waiting. Start arranging thing you can control. I see you mentioned losing insurance. One thing you can do while you wait us research flma and your work insurance options if your off work for 4 months. Alot of people work during cancer treatment. I took intermittent flma. My chemo was every 3 weeks and I only felt bad for a week, so I worked the other 2 weeks. Radiation was not too bad working, so I set my radiation for 430pm and set it up for after work. If by chance you did live insurance, you can apply for Affordable care insurance. I just had stomach cancer and had to quit working. I am on aca insurance and it has covered all my treatment and hysterectomy and mastectomy. Work on what you can control and wait for more information on your exact type of cancer. All breast cancers are not the same, each one has different treatment plans and different types of targeted therapy drugs. Try not to speculate your full diagnose. I know it is an awful wait, but you can work on a few things beforehand to keep your mind off the what ifs. Also remember Breast cancer has a high survival rate. One thing oncologist know really well is how to treat breast cancer. Good luck, I have a good feeling you will be fine.
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Try not to diagnose yourself. The doctors will get it done for you, eventually. I started with a 2cm tumor, Grade 2, and a touch of DCIS with no suspected node involvement. I went in for a single mastectomy and sentinel node biopsy but had multiple nodes removed during the surgery. The final report after surgery came back with extensive DCIS, 8.5cm tumor grade 3, and no node involvement. I had a recheck on everything, and the pathology was changed to extensive DCIS, 8.5cm tumor grade 2, and cancer at the nipple. In the final report, I was stage 1B with a low Oncotype, which I considered good news after I was much better educated in breast cancer.
Without scans or more biopsies to confirm anything before surgery, you won't have the full report until after surgery.
Try talking with your oncology team about the anxiety and stress you are taking on with the diagnosis to see if they can help. They are experienced in this and can provide guidance. This is not new to them. Everyone handles it to the best of their ability. No one has to do it alone. It does get better.
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it’s a really bad day. I don’t know what to do. I need to talk to someone
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What can we do to help? Does your medical facility have a social worker or hot line available? What about your county? Many of them have warm lines or resources for crisis counseling. Have you called your doctor to see what assistance might be available? Please let us know.
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@bossmom24 you aren’t alone!! We are here for you. Keep talking to us when you are down if you need to. We UNDERSTAND. Sometimes crying it out and venting really helps the body, mind and soul. I know sometimes I will just stand in the shower and bawl my eyes out. And sometimes I will come here to let it all out and vent. At the end of the day it actually makes me feel better. Your going to have good days and bad days, but know your strong and you have A LOT to live for! And know your “odds” are very good. Fortunately even Stage 4 breast cancer survivors are living long lives because we have come so far with treatments! I think I might have mentioned to you already my grandma had her first bout of Breast Cancer at age 26 and she’s had two recurrences and is Stage 4. She’s here and strong as ever at 80 years young! And my Aunt also- was given a 20 some percent chance 15 years ago Stage 4 and she’s in her 60’s and doing great! You’ve got this. It will be OKAY. But know you CAN feel and let it all out here. If you ever need to personally message me or call me I will be glad to talk to you. It might be good for me, too ❤️❤️❤️
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{{{{HUGS}}}} I’m sorry it’s a bad day. I got an IV infusion today by the beach and feel so worn down still. It’s the stress of impending suckdom. Not knowing answers means not being able to see light at the end of the tunnel. I keep hearing things WILL get better with more sense of control once this part is over. I hope you get to rest and pamper yourself today.
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thank you. I had a bad panic attack and I wish it wasn’t Saturday so I could call my psychiatrist. I am thankful just that the few of you reached out. I have a lot of family and friends but I still feel completely alone. No one knows what I’m going through
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Bossmom - just lending my support. I feel so bad for you. This truly is the hardest time in a breast cancer diagnosis. The waiting is miserable and torture. Exbrnxgrl had good suggestions to reach out for help. Does your psychiatrist have an answering service you can call?
We understand what you are going through and are here for you. (((Hugs)))
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@bossmom24 one of the biggest things I hate to hear people saying is “well atleast they caught it early” or “breast cancers common so you don’t have to worry” or “there are many worse cancers to have gotten”. But it doesn’t change the fact that we still have cancer. Some of these things come off as very insensitive. And I’m sure they are just trying to be optimistic for me, but unless they’ve been here they don’t understand the feelings that we have being in “the unknown.” Nobody realizes that mine was actually DCIS since 2021 misdiagnosed as benign tissue, so it’s a bummer to know it could have been caught prior to becoming invasive. And nobody expected me to have lymph node involvement since my tumor was “so small so they MUST have caught it early!” 🤦♀️ I actually love coming here for encouragement and positive stories from others just like us. It makes me feel so much better and I hope it will help you too. It took me some time to get out of the “grief” moment and into the “brave fighter,” but I have this group to thank for it! I’m sure you’ll get here too! But yes…the grief and sadness come first and that’s totally normal. ❤️
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thank you all. I just feel like my progonosis is so grim with it being a very large tumor (5.3cm) plus lymph node involvement. Everyone that has reached out to me friends-wise either has been dcis or stage 1-2. I don’t know any stage 3 survivors who haven’t eventually turned to stage 4. I keep trying but, it doesn’t look promising
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bossmom,
I am stage IV de novo, so not everyone who reached out to you is lower stage. Although I mentioned that I am not typical, I have had 12 progression free years.
You mention that you feel your prognosis is grim but you haven’t received any prognosis yet. Although you have staged yourself, you haven’t received your official staging, correct? It’s not uncommon to let your mind wander to the worst case scenarios, but please don’t put your foot in the grave yet! I can’t see into the future, none of us can, but focusing solely on the worst possible outcomes is creating more stress. I also wanted to say that knowledge is a powerful tool for bc patients but don’t let internet searches take the place of your medical team. One thing you often read on this site is, “Dr. Google is a terrible diagnostician.”I personally don’t know any stage III patients beyond bco members but many of them appear to do very well and never become metastatic . And that is only a small sampling of all stage III patients in the world as bco members represent only a small portion of bc patients world wide. Hang in there. It sounds trite from where you’re sitting right now, but this really is the worst time. Regardless of what your dx turns out to be, once all the info is available and the treatment plan is in place it actually becomes more doable than you’d think. Take care
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@bossmom24 even stage 1 and 2 can become Stage 4. Everyone’s journey is unique and you can’t base your story off of anyone else’s regardless of the stage. Like I said, I have two close family members stage 4 who have been alive and thriving several years after the stage 4 diagnosis. It’s not good for yourself to look at everything so negatively. It’s hard but really try to keep your head up! You’ve got this! Be strong for yourself and for your kids. I know the start of this journey is sad and grim, but it will get better as your surgery and treatment plan is set. I remember the phase your in. The waiting on results, waiting on surgery, then now waiting on my treatment plan beyond my surgery is where I’m at now. But let me tell you I feel better having checked off two of the three!
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@bossmom24 did your report say if you were Estrogen or Progesterone positive? Or HER2 positive or negative?
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bossmom24, just sending my support, too. I hope you are finding relief from your anxiety. Do what works for you, try knew things and then keep trying newer things. Since I knew nothing about 'eating healthy' with cancer, I found this website helpful during my waiting periods. I poured myself into eating well & exercising to prepare for BMX surgery and then chemo. It was something I could control and I knew it would make the surgery recovery and treatments easier to manage. My sister (dx w/ BC 10 years before me) gave me the book, 'Anti Cancer Living' by Lorenzo Cohen and Alison Jefferies, that was helpful, too. We are all here for you. You can (and will) get through this. Big Hugs! Take care.
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Bossmom24: There is every chance you are prognostic stage 1B - you are 'allowed' up to 9 lymph nodes for grade 2 ++- tumours regardless of size before you go beyond this stage. Validation of this newer staging system has confirmed it is more accurate regarding prognosis than the previous anatomical system.
I know at least two stage 3 long term survivors (one with 32 positive nodes) plus a couple of women diagnosed with breast cancer in their 30s as well as a bunch of others with various stages/types/stories, all doing fine.
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thank you all. I know listening to me is just a bummer and I’m being so sad and negative. You are all putting up with me, and responding and I really truly appreciate that. I was in a really really bad place on Saturday, but today I pulled it together for my daughter’s party and I feel a bit better overall. I did break down and cry while picking up her balloons at the store and the sweet lady at the counter hugged me. But I held it together for the party. Thankful for kindness of strangers
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@bossmom24 your feelings are normal for what you are going through. I’m sure we’ve ALL been there. This groups a great place for support. We are here for you! Glad you were able to enjoy your daughter’s party!
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I don't know if you've seen this yet but we had a stage 3 commenter make it a point to come back today for her cancer anniversary to tell us she's now at 18 years. So yes, people are living long lives at all stages.
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wow that’s great. Thank you for sharing. I haven’t been browsing the boards in the past few days.
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I’m going for a breast mri tomorrow. Anyone know what to expect in terms of what exactly they are looking for? Will they give me results then? They said it’s bilateral with and without contrast. Even though the cancer is only on the right side. Can they tell if there’s anymore nodes affected?
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I had one done between my biopsy and my surgery. You lie face down with your breasts in the coils, and it did not take too long. They take some pictures before the contrast and then some more pictures after they inject the contrast. It took two days for results I believe. I was told they were looking to see if there was any underlying disease other than what the mammogram picked up, and it is much more detailed for the surgeon to make his plan.
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@bossmom24 good luck! I had one too after my diagnosis and the results didn’t take long.
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hey everyone I got my mri results on thr portal. I’m a little confused about the 2 satellite enhancing masses they found. Does this mean it’s 2 new cancers or the main one has spread around the breast? Also, this means it’s not in any additional nodes correct?? Ugh can’t wait till my appt with the surgeon. It’s so confusing.
**There is a large irregular enhancing mass in the lateral right breast measuring 3.3 x 2.0 x 4.7 cm. This was recently biopsied and consistent with malignancy. There is a 1.0 cm enhancing satellite mass in the anterolateral right breast and a 5 mm enhancing satellite mass in the anteroinferior right breast. There is a single enlarged right axillary lymph node measuring 1.5 cm in short axis, which was previously biopsied and consistent with metastatic disease. There are no masses or suspicious areas of enhancement in the left breast.0 -
Since your cancer is confined to the breast, all conclusions about your tumors are still up in the air in a sense. It would really, really be impossible for us to start analyzing this in the manner that your doctor will. Please understand that almost all of us have been through similar assessments followed by too much waiting but trying to come up with a medically correct interpretation of your findings, by non-medical folks, borders on irresponsible IMO*. Again, please don’t get yourself worked up and stressed out by trying to do the doctor's job. The waiting is awful and we all want answers yesterday. Take care .
- I know not all members agree with me on this but breast cancer is serious and for as much as many of us have been dealing with it for years, I am uncomfortable with interpreting things that are far above my pay grade, especially with regards to other people’s health.
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Perhaps if there is a radiologist on here they could help, Bossmom, but reading MRI results isn't anything I'm familiar with personally. And nothing can confirm whether additional lymph nodes are involved until surgery but only one lymph node seems to be mentioned in your report and you knew about that one. If you want to call about your report by the way since it's in I would think your doctor's office would be responsive.
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Looks like nothing you didn’t know already in there? Hoping these are good results for you, @bossmom24. I hope you can talk to a doc and know for sure soon! 🙏🏼
I have my MRI Monday and a PET scan the following week. Today is an echo, tomorrow is port placement, and I think chemo will start this week or early next,
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I’m spiraling again. I just had my breast surgeon appt and it did not go well. I am ER/PR+, Her2-, but they had to do the fish test as it was a low positive (+2).
The really bad news is my ki67 was 77% for my main tumor and 57% for the lymph node. Wtf that is soooooo high! That’s so bad right?? I’m so scared.
She made me feel worse. Just said I need a CT and a bone scan and they will call me to schedule with an oncologist. She did not give me any sense of feeling like I’m going to survive this. She made me feel more scared that it’s spread further.1 -
bossmom,
I will say that I am no expert on this. My medical facility does not test for this and that is true of other facilities as well. Here is a quote from an article on bco:
“Ki-67 testing One way of measuring how quickly the cancer cells are growing is a special stain called Ki-67. Still, right now, Ki-67 testing is not a recommended routine test because the results can vary widely and may not always be completely accurate.”
This testing can yield a piece of information that may be relevant to the bigger picture but it is not , by itself, indicative or predictive of anything as it has widely variable results. It’s good to be an informed patient but I think you’re leaping to catastrophic outcomes when you have no indication that that is the case.
Why did your doctor make you feel worse? I think that until all assessments are complete, there isn’t much she/he can say save for explaining what is currently known. Remember, your doctor has no way to guess, deduce, or even divine, what the full picture may be until then.
I am not understanding why your visit didn’t go well but I strongly urge you to contact your doctor with your concerns and, perhaps, reassurance that your Ki-67 does not in and of itself tell you very much. What would you have liked him/her to say when you are still waiting on a CT and bone scan? Take care and please don’t focus on each puzzle piece as each one alone does not provide the complete picture.1 -
@bossmom24 when I talked to my medical oncologist the other day I specifically asked about the Ki-67 because mine is on the higher end too, and she said they don’t really acknowledge that as far as the treatment goes and can vary from biopsy to surgical pathology. I also had a ct scan and bone scan so I wouldn’t read into it much. They are doing their job to make sure they know as much as they can up front so don’t be discouraged because they are doing more, but be grateful they are being very diligent! You’ve got this!
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