Scared and alone. Please help.
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Oh dear! I hope no one thinks I was suggesting telling pre-school/elementary school students about their bc. I had actually just moved from kindergarten to first grade the year I was diagnosed. Back to school night occurred about 10 days into the school year. After doing a typical BTSN presentation, I was totally up front with the parents (students were not present) about my health,but let them know that I would be very general, non-specific and reassuring about my health when I spoke to the students. I was out for 3 1/2 months and it was a non-issue with the students when I returned. About three or four years later as we were beginning the school year, a boy in my class said, “My mom says you have cancer.” “Yup,” I said, “Now, who has a fish or reptile as a pet?” 😉. He had not been in school the year I was dx’ed but his sister was, though she was not in my class. Although I have been completely open about my bc with my school community, I am still not sure why his mom chose to share this with him 🤷🏻♀️.
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xbrnxgrl, I did not think that at all! I think my post was confusing. I was mentioning I was a preschool teacher and then I said how I was worried about telling my kids I have cancer because thru can tell something is wrong. I think Maggie thought I was talking about my students, as many teachers call their students their “kids”. So I was just clearing that up. I should have specified what I meant. I definitely won’t be telling my preschoolers. My 9 and 11 year old have been asking me what’s wrong cause they know I’ve been crying and sad. So I will have to eventually tell them.
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Bossmom, I was happy to read that your medical team is there for you especially during this waiting period. That was a key cog for me during my whole process. Xanax-good call, I'm a firm believer in putting yourself first right now, hubby might find that a little unnerving, but do what's best for you. Let the grandparents or hubby plan the birthday party if you can't do it. Then go and ENJOY it with your daughter. Biopsy results will be back soon, surgeon apt is early May…your questions will have answers soon. Until then, big hugs & positive thoughts!
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yes I love my gp and my obgyn who have both given me their personal phone numbers and who have been not only calling to check on me, but doing research and finding recommendations on best oncologists/breast surgeons in the area and calling around trying to get me in sooner. They are doing everything they can which isn’t much until I have these results but I’m thankful to have them looking out for me.
I also have a cyst on my thyroid and cysts in my ovaries. Had these checked a few months ago and brushed off as nothing because the report said no further imaging needed. But now…i dunno. Do you think there’s any relation to the breast cancer?1 -
I have growing nodules on my thyroid which have been biopsied multiple times and are benign. I also have lung nodules that are slowly increasing but appear to the radiologists and my pulmonologist to be caused by inflammation. Even if you have cancer it does not cause every abnormality in your body. If your biopsy is positive and surgery is done the results of your surgical pathology will determine treatment and whether any further imaging is needed. I had a 3.2 cm tumor and a positive lymph node but did not require further imaging. It’s tough to deal with the unknown and waiting involved but adjusting to it is something that comes with the territory. Hang in there, we’ve all been through this and are still here to tell the tale.
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@bossmom24 - the waiting is the worst. I am now a two-time breast cancer survivor - in the midst of 25 radiation treatments, and doing everything I can to be positive and celebrate every day. I feel good, and everyone says I 'look' good - although I don't always know what having breast cancer 'should' look like. Your diagnosis has not been confirmed, and we all pray you do not join our crappy club. But - I will say - if you do - this site/community has given me the best information and support throughout my two 'bumps in the road'. I work in healthcare (not clinical) and sometimes it makes it even harder to know just enough to be dangerous. Both times I was diagnosed, I upped my anti-anxiety meds with my primary care doc and this time, I also added Xanax so I could sleep at night. The nighttime was/is the worst time for me and when I go down the proverbial rabbit hole. I also mentally wrote my obit and planned my funeral multiple times in my head. All of those feelings you have are natural - the testing is overwhelming and the waiting is unconscionable. However - all here have said, and I agree - the more information/test results you are armed with, the better off you will be making your treatment plan (if needed!!) Knowledge is power! Thinking of and praying for you - and know you have this whole community to vent to.
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@bossmom24 should you get a diagnosis, look into short term disability through your workplace.
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In regards to thyroid nodules, I had them, too. They were found years before my breast cancer. I doubt they were related except maybe to let me know I had some inflammation. Anyway curiously enough they disappeared a year after going on endocrine therapy. No idea why but it was one less monitoring exam I have to undergo yearly so good riddance :)
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thank you Kay! Hopefully that’s it! I have a complex cyst on my one ovary that I figured wasn’t cancerous and haven’t had further testing but with the whole breast cancer thing, I’m just paranoid now that it’s all over the place. I’m supposed to have my preliminary biopsy results back today. Hoping they call soon because my daughter has a chorus concert and my son has a baseball game and I definitely don’t want to answer the phone and deal with that during either of those events.
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I hope it’s good news, Bossmom 🙏🏼 Hang in there!
I’m obsessively-compulsively checking my patient portal. I’m not getting an ounce of “focused” focus time at work, and everything else feels on hold while I’m literally and figuratively holding my breath.
I’m glad you posted this thread; reading along is helping me ❤️
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Good to luck to both of you. Oh we all know how much this absolutely sucks. So much for me in fact that I lost ten pounds during the diagnostic process and the day they told me I had breast cancer was actually a good day. I knew and I knew specifics and could now figure out how to deal with the damn thing. Called the NCI hospital nearby and made an appointment within 48 hours and although I've had bad days during treatment and still do sometimes, nothing has been as bad as the lead in to diagnosis. So know that regardless of the results, it gets better and gets better quickly. Just hang in there.
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it was bad news but I was expecting it. It is cancer in both the breast and lymph node. The rest of the results will take another 3-4 business days. I have an appt with a breast surgeon at a nearby hospital on may 3, but I am calling an nci hospital to see if I can get an appt sooner. If not, I will keep my first appt and try to go to the other appt as a 2nd opinion.
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@bossmom24 I am sorry. Take as many deep breaths as you can, focus on getting a solid plan from your team and getting through this now. You will get through it. Take the support of those that love you and know that none of this is your fault. I agree with @kaynotrealname that the lead in to diagnosis was the worst part. Once I had a plan in place to get rid of this, I felt much better. Best to you.
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I’m so sorry @bossmom24 … I think this entire community has been waiting to learn your results … hoping that somehow it could turn out okay for you. We care, and will be here for you and with you, whenever you need us.
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Bossmom, I’m sorry. {{{HUGS}}}} I wish it was better news. My doctor called me in this afternoon, and it wasn’t good news here either. I’ve decided partial results is more maddening than waiting for the first results. I have much reading to do now. I have no clue what half of the crap means.
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I am sorry you are going through this too Bailey. I am very scared. The radiologist said to me, if I were you I would go to xxxx and named a very highly rated hosptial. I agree that it’s a good cancer center but it left a weird taste in my mouth. Does she know something I don’t know? Like can she tell that it’s really really bad from the reports? Like stage 4 or something and that’s why she is telling me to go to this specific hospital?? The anxiety is so bad. I keep thinking everyone knows that it’s stage 4, not telling me and I’m sitting here. I know I’m probably crazy but I don’t know how I’m going to wait till may 3 for my appt. They said I won’t get any further testing results sent to me. They will talk to me about them at my appt.
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I was adverse about a "cancer center," too, but that's what's been recommended to me for the area I live in now, time and agan… and yet again today. I researched the local oncologist's name I kept hearing. She seems good, and she's beloved by all who review her. I told myself that if I could get it without waiting yet another month and a half between appointments as I have been, I'd go for it. I called from my PCP's parking lot, and I have a first appt with her on Monday afternoon. According to what AI says about my results so far, mine is "potentially aggressive," because there's hormone and lymph node factors that makes it challenging. I'll hopefully know more soon. I hope you know more soon, too and it's all hopeful things!
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so also, I just pulled up the report and it says this:
Tumor: Moderately differentiated invasive ductal carcinoma
Anyone know what ‘moderately differentiated’ means?
Lymph node: Invasive ductal carcinoma with associated scant lymphoid cell aggregatesWhat the heck does that scant part mean??
I should know about receptors and everything at my appt next Friday.
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Bailey I think mine is the same. My doctors also feel it is hormone receptive, estrogen specifically and mine is also in the lymph node. I made an appt with the breast surgeon at the nci hospital that was recommended to me on may 10. Please keep me updated on your situation. I am so sad for you. But I’m not gonna lie having people to talk to that truly understand is helping for me to process and cope
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Bossmom, I, too, am sorry for your results. I'm sure life is a blurr, but things will start falling in place after you meet with your oncology team. Can I suggest getting a notebook and writing down all questions, concerns you have - don't be afraid to advocate for yourself. Ask questions if you don't understand the terminology. Bring another person to all appointments if possible; another set of eyes and ears is very helpful because life can really be a blurr.
ER+ is good in regards that it allows you hormone therapy (another layer of defense) post surgery and treatment. You can search terms like 'moderately differentiated' on Breastcancer.org, although since they rolled out the new format for this site, I'm not sure how to do it. Maybe the moderators can chime in with assistance. Again, hang in there. You can and will get through this! We will all be there for you as best we can.
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I really wish it was better news for us both. I’m so thankful that forums are still around to lean on. I’m setting up camp on the IDC boards to start learning more about my so-far-subtype. I can glean from my biopsy: HER2-positive IDC, accompanied by high-grade DCIS, axillary lymph node metastasis, and hormone receptor-negative status (estrogen receptor-negative and progesterone receptor-negative), suggesting (per the AI program I’ve run it through) “a potentially aggressive subtype of breast cancer requiring targeted treatment approaches.” I want to find out about grading/staging yet and how I make sure it hasn’t spread beyond my armpit. I can’t believe I’m here again. I JUST got accepted into a highly competitive masters program this fall, so the timing potentially sucks. I feel for you with littles yet— thyroid cancer is much easier than breast cancer, but I had littles underfoot when I went though that 13 yrs ago.
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bossmom,
I too am sorry that you got the news. Lots of deep breathing, lots of distraction … but see my next sentence.
You had a breast biopsy and that does not and cannot determine if one is stage IV. Stage IV is metastatic, meaning the cancer has moved beyond the breast. Your biopsy tissue is only breast tissue so even the most highly trained radiologists can’t tell if something has metastasized when they are only looking at breast tissue. Metastasis is determined by biopsy/imaging of the organs/structures that are suspected of that. For example, I had a bone biopsy and that is what determined that I was stage IV. Nothing in the breast can reveal if you are stage IV.
That being said, please try not to focus on a scenario which is not at all common. Only about 6% of us were stage IV de novo. No guarantees, but the odds are in your favor by far. So banish those stage IV thoughts and know that a breast biopsy tells you nothing about metastasis! Take care and know that we are all thinking of you 💗3 -
bailey,
Very sorry to hear your news as well.
I don’t feel comfortable interpreting or giving my take on reports but I wanted to let you know that DCIS and IDC are commonly found together. IDC arises from DCIS. Since IDC is invasive, you will be treated for that and it will take care of the DCIS as well.Once your final pathology report is in, you and your mo will determine next steps. Doctors differ on further screening, i.e. imaging such as PET or CT. Because metastasis is uncommon at initial dx, it is often considered unnecessary and exposes one to unneeded radiation and they are hugely expensive*.Oncologists seem to handle this differently and there appears to be no standard approach. That would be a good question to ask your mo but remember that very few people are metastatic at initial dx. Can it happen ? Yes, but it isn’t likely. Take care
*$5,000 and up depending on your area for a PET scan.
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Bossmom, moderately differentiated normally means a grade 2 tumor. There are three grades from 1 to 3 with one being the least aggressive and three the most. Your's seems to be right between the two which is not even remotely unusual. And as far as a high rated hospital being recommended to you, it's just because it's a good hospital. No other reason. And regardless of the type of your breast cancer you want a good, highly rated hospital if possible.
Bailey, I'm so sorry your's came back positive also. If you have any questions, just let us know. But it reads like both of you are moving quickly and that's good. Once you have a plan in place you'll feel better and will just get on with it like the rest of us did. Thinking of you both….
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Bossmom it is definitely a shock to be faced with the prospect of breast cancer all of a sudden. I was diagnosed in 2011 and had a lumpectomy and radiation. My niece was diagnosed at the same time. She was in her late 20’s. She had a young son at the time. She did everything she could to knock the cancer in the head. She had a total mastectomy, and chemotherapy as well as radiation. She took her Tamoxifen religiously. She has remained cancer free all of these years and is doing very well. Cancer is not a death sentence by any means. Just take it one step at a time, take a deep breath and resolve if it is cancer that you will do everything you can to eradicate it. Treatment is so much better now. You will get through this.
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I read the report a little more and at the end it says locally advanced breast cancer. So basically it’s saying I have stage 3, grade 2? I can’t believe this. I feel like it gets worse every second. I don’t know how I’m going to be positive through this because it just sounds so grim.
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@bossmom24, and @bailey.boo, we're so sorry to hear about your diagnosis. Please know that you're not alone in this, and bossmom, it's okay to feel however you need to feel. What's important is finding ways to navigate through these emotions and finding support along the way. And, that's why we're all here!
Below are three articles from our main site that will hopefully assist you in understanding the stages and grades of breast cancer:
How is a breast cancer stage determined?
We hope this helps! Let us know how things are going.
The Mods
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Locally advanced breast cancer, Bossmom, just means that lymph nodes are involved. So no they are not saying you are stage 3. They are saying you have a lymph node that was positive and that can include anywhere in the classical staging system from 2B, 3A, 3B and 3C.
Remember breast cancer is a varied disease and much goes into determining stages including the makeup of the tumor. In fact we have two different staging systems and you can be at a different stage in each depending on tumor characteristics. I was at 2A in one and 1B in another.
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Bossmom - I think you should wait for the official determination before concluding anything. I was considered "locally advanced" at diagnosis in the fall of 2018, and unlike what Kaynotrealname has heard, I had no lymph nodes involved, and no detectable spread. It was my understanding that the designation referred to the fact that I had a large tumor (5.5 cm), but all was confined to and concentrated in the breast. I did happen to be stage 3b, grade 2 at the time, but a little later they changed the staging guide and I think had I been diagnosed under the newer system I would have been more like stage 2 b or c or something, so don't get too hung up on what it gets called either. You can see that both Kay and I have received different info, so who knows? Just take it one day at a time. I also want to say that I am truly sorry about what has happened to you and you have my heartfelt sympathy for sure. Take this all minute by minute, hour by hour, and day by day. You will get to a better place as time goes forward and the pieces of the puzzle come together more. It is hard, and we are all here to offer hugs and support. Hugs!
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I heartily agree! Although we want all info yesterday, trying to stage oneself is difficult because of the complexity and differences in staging systems. Please let the radiologists do their jobs and let their training and expertise determine your stage. That’s their job!
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