Diagnosed and Feeling Overwhelmed
Hello.
I had my mammo and ultrasound on 9/24 and was told I needed to come back for a biopsy on my right breast. I've had a biopsy in the past but all was ok. I haven't slept well since my biopsy on 9/29 and it's even worse now after the diagnosis yesterday 10/1, that I have invasive ductal carcinoma. I need to have another biopsy on both breasts on 10/5 and am even more terrified. I don't know what to say to my kids and the rest of my family. I don't know if I will feel better once I meet with the surgeons and have a treatment plan. I'm totally overwhelmed and feel out of control and just want to get rid of this. Can anyone share how they coped with things? Thanks.
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oh lollipopgirl17,
I am so sorry you had to join us. It is a shocker for sure.
I had issues with patience - I too wanted it out now! Diagnosed late June, Surgery in August. The surgery (lumpectomy) went well and now it is chemo, radiation, and hormone therapy to keep it away. I started chemo on 9/14; so still have a ways to go.
What helped me: I read as much as I could; (this site is awesome for that) and talked to my sisters and close friends. (I don't have children or a husband) Just be as honest with those you trust and they will support you.
I had a list of questions for each doctor and that also helped. Deep breaths help too. If you are a religious or spiritual person - focus on that. If not, I hope you have someone to talk to.
Good luck to you, I am sure when things calm down and you have a treatment plan; you will be able to cope.
MEandJax
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Hi, I know how you are feeling.... I had the same tests as you on the same dates and was also told I had Invasive Ductal Carcinoma in the left breast. Estrogen Receptive Positive.... Also feeling overwhelmed and feeling impatient since it is the weekend and I cannot make with a surgeon until Monday.... I am 58 you. ??
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Hello MEandJax and RJM33437.
Thank you for your feedback. I feel like I'm in a nightmare. I try to act "normal" for my kids who are 13 and 11. I'm 47 and can't wrap my head around this. I'm angry too and I also don't understand why they couldn't do the biopsies on both sides at the same time. This way makes it worse. I won't be able to meet with the surgeon until after the results come back from this biopsy. I feel awful. Have no appetite and so much anxiety. I keep thinking that having a hysterectomy in December 2020 didn't help and now this. I have so many questions and no answers.
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lollipop I’m so so sorry you have to be here. I remember the days of first being diagnosed. I’m still pretty new to all of this and my anxiety and depression are real. (Which I never had either before the diagnosis) please know I’ll be praying for you and If you have any questions feel free to message me privately if you like. I have found this forum to be so so helpful.
Hugs sent to you.
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Dear Lollypopgirl17 and RJM33437,
Welcome to you both. We are so very sorry for your recent diagnoses. We are very glad that you reached out to our members. You are in good company here with others who truly can offer support and helpful tips and information. Keep us posted on how things continue for you both.
The Mods
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Thank you to all you lovely people for replying and sharing your thoughts. It makes me feel a little better. I wish none of us had to go through this. It's the worst having to wait. I don't want to do another biopsy but it has to be done. Hopefully I will get to meet with the surgeon soon after this.
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The anxiety is terrible but normal. For what it's worth, basically everybody feels better after the initial meeting with doctors. I felt I could breathe again. There was still ongoing anxiety until the full pathology and onctype results came back after surgery, but it was never again as bad as in those first weeks.
If you have a supportive doctor, I would ask them for a prescription to help you with the anxiety and sleep. No need to suffer needlessly and pointlessly. My regret was not starting those meds earlier.
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I agree with Salamandra, ask you doctor for something to help you with the anxiety. I’m so glad I did, it really helped during those first few weeks. You can do this!
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Thank you Salamandra and OCDAmy. I will ask my doctor for something because the emotions I'm feeling are too much.
I have a couple of questions/concerns and not sure if I need to post somewhere else:
How involved will my doctor (ob-gyn) be through the entire process? He's pretty much in surgery himself every week. When I spoke with him, he reassured me on a few things but I would feel better if he was on top of things as well.
I'm in NJ and just wanted to see of other's experiences at the same hospital.
Thanks.
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Hi Lollypopgirl -
My referring doctor - gynecologist who found the lump - was not involved at all once I started seeing my oncology team. I made sure she had access to the medical records and when there's an impact on my gynecology care she has the info, and could communicate directly with my oncs if she ever needed to. I think if someone had medical issues that could impact the cancer care, their oncologists would probably bring in their doctor/specialists. But in my case it was more of a 'write her name on the release forms, keep her posted next time I saw her' kind of situation.
(I'm not in NJ though)
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Like salamandra, my ob/gyn had no involvement with my care after my bc dx. She does have easy access to all of my records (I’m a Kaiser member) but not my bc care. I think that this is fairly standard as your mo will be the point person for all treatment decisions and procedures and, of course, is the cancer expert. In terms of coordination of care, it seems that the mo is the go to person for that. It may differ between cancer centers, medical groups, etc., but your ob/gyn is generally not involved unless there is a compelling reason for that.
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Hello
I was 45 at my diagnosis, 11 months ago. I remember being where you are and wondering how my mental health would sustain. Guess what...it did...I found telling my children to be extremely challenging with lots of tears. I would definitely tell them but wait until you have all of the information first. There are lots of steps you will take but take one at a time. Come to the forums often, it is a wealth of information. I endured surgery, chemo, and radiation. Things can change at every turn. If prayer is your outlet, cling to it. Whatever makes you relax ..then hold on to that..find things that keep you busy..be your own best advocate so become knowledgeable. You are 1 in 8 women diagnosed.. I'm sorry you are here but you will be supported by women and men who have shared experiences..
Virtual Hugs
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Thank you again Salamandra as well as exbrnxgrl and AB45. To me it's kind of sad that the PCP or ob-gyn are not more involved but I get it.
I have found this site very comforting so far. I really appreciate all of you...How are all of you doing and how has it been since you first got diagnosed?
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Same here. Had biopsy this past Monday. Lab results are invasive ductal carcinoma. Meeting with surgeon on Monday. Just want it out now and totally overwhelmed. I'm 56. Mine is HER2+
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lollipop girl,
It sounds as if you are very comfortable with the doctors you had prior to your dx. That is wonderful but they are not the experts on the situation you’re facing now nor will they, likely, be part of any decision making regarding tx or most other aspects of managing bc. If those doctors are willing, you can certainly provide them with info on your situation but since they will not be involved in your bc care, it would be informational only. I really like my pcp, but she is not an oncologist. She has access to all my medical records but is not involved in my bc care.Take care
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Hi Rubyroad2000. I'm so very sorry about your diagnosis. Please know that I'm here if you ever need to reach out. I hope you will find some comfort being on this wonderful site.
And exbrnxgrl, yes I really like my doctors but I know that they won't be the ones to go to for treatment advice. I just hope my ob-gyn will care enough to check in on me. But maybe I'm asking for too much.... You take care as well.
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hello sweetie ill never forget going thru all you just described but I had my cry several times what me I eat good exercise etc. Well my story is i prayed for a good living man in my life been divorced for yrs. God sent him into my life almost 6mo dating and move in together planning our 2nd marriages then I found the lump in shower. Was diagnosed had 2nd opinion and then IDC stage2 0/3 nodes 3mo chemo before and after L mast got married then 7wks rads and 5yrs on tamoxifen .Praise God now a 27yr Survivor. Hold on sweetie Positive thoughts and Hope Hope Hope. msphil
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Hello everyone. Thanks again for all your thoughts, support and just for "listening".
I had my appointment with the breast surgeon today. I liked her but I'll be honest and say that I was a bit overwhelmed with the information. I asked a few questions here and there but I still feel like I don't have enough answers. Because I'm supposed to meet with an oncologist to go over treatment. This is all so confusing and stressful.
I also have a question that I will make sure to ask at my next appointment:
--Does the stage change after treatment and surgery?
Thanks.
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Lollypop, The pathology report from your surgery is going to determine your treatment and actual stage. The oncologist will dictate your treatment plan. You will also see your surgeon for follow up. For how long depends on which surgery you choose. Sending my best. This is the hardest part. We're here for you, it will get better eventually.
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I had my biopsy on Tuesday, just got the results. I have 3 masses that are IBC and now I get to wait to be contacted by the Breast Clinic. I suspect the waiting is going to be the worst. Because the clinic posts all of the tests and images to the portal, I had already figured out that it didn't look good so there was no surprise. We'll get through this!
Hugs
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I am sorry you are going through this. I will be honest, yes your treatment plan and stage can change depending on surgery pathology report. When I was first diagnosed I was Stage 1 and no chemo...after surgery pathology report, lymph nodes positive and chemo...no one wants chemo but if and when. ....you will get through it!! Take one thing at a time and try not to take too many steps at first...this can be a long journey but you have other survivors cheering you on!
Best
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Lollypop, I always had a good relationship with my ob/gyn, but I saw him only once a year for over ten years - he called me his most boring patient because nothing ever came up. Hadn't even started menopause before all this. Then boom, the cancer at age 51. As others have said about theirs, my ob/gyn got all the reports and diagnosis. One evening, well past office hours, he called me directly to offer his support and whatever recommendations I might need. I was so incredibly touched! So now I'm no longer his most boring patient and he isn't directly involved in my cancer care, but he's been great to have in my corner, and he continues to keep an eye on me even though technically, after he did my hysterectomy (unrelated to BC) I'm not really in ob/gyn territory.
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I'm so sorry to hear about your diagnosis and completely understand and know how you feel. I'm a 14 year survivor, never missed a screening; did everything I was advised to do; cycling 15 plus miles a day; healthy diet; no drinking or smoking; literally doing everything possible to keep myself healthy. Then it hit me like a tone of bricks. The word recurrence and enlarged lymph node. This was on 9/15/2021. I've had biopsies, bloodwork; ultrasounds; MRI; CT and even a panic attack that mimic me having a heart attack that scared me so much I ended up in the ER for 5 hours. I was in to see my PCP yesterday and left with a prescription for Xanax. I'm scheduled for a PET Scan on 10/19/2021 to see if the cancer has spread elsewhere. I have not sleep since 9/15 and while the waiting is the toughest part, I encourage us all to tie a knot in our rope of hope and hang on. We are all troopers and in for the fight of our lives! God bless each and every one of you. Continue to hold on to God's unchanging hands...🤲🏽
Angelwings1
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Hi everyone and thanks again for all your thoughts, feedback and support. It means so much to me. 🤗🤗
I met with the oncologist and have appointments set up to get my echocardiogram and port placement, since I will be starting chemo first before any kind of surgery. Everything is moving so fast. I can't wrap my head around that this is actually happening to me. I'm surprisingly staying as calm as possible.
I also met with the Associate Director of Oncology Clinical Research at my hospital. With the doctor's recommendation, they want me to take part in a clinical trial of Paclitaxel, Herceptin and Perjeta. Anyone else take part in this and would you be willing to share your experiences?
Thanks and take care.
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Yes your staging is finalized with pathology after sugery. You did not list your hormonal status or Her2Nu status but you may not know those. Those can affect what treatments are needed to keep you safe and thre cancer cells away. I know there are threads on most of the chemo drugs in there that have some info on there and the main site has a ton of infornation on them as well. Best wishes to you.
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Hi Lollypopgirl, sorry to find you here. Sounds like you are moving thru all the steps. I also had 2 additional biopsies after my initial one and dx too, it is all overwhelming. I was also strangely calm. I think it’s already so upsetting enough, that it doesn’t really help to work oneself up more. And there is def shock in the beginning.
I was dx in March and just finished chemo, and feel like I am just starting to really deal with it. So yea, it’s a process. Just feel your way thru it, ups and downs. Hopefully you have some good support.
I am not familiar with that treatment, but I am sure someone will come along who can help. I am in NJ if you would like to message me on anything local.
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Lollipop Girl 17 And all....I never thought i would be on this road. 1 of 8 with breast cancer? I found the lump in late June. To the PC office, then referred to City of Hope. I too used prayer. Told myself i can do anything once. I had a mammogram, ultrasound breast, ultrasound pelvic, Cat Scan, MRi and Bone scan. My breast cancer was shown to be 5cm in left breast, no lymph nodes or no spread anywhere else. Whew i thought. Then August 12 i got a call from the oncologist. She did not want me to be blindsided at my DR. visit the next day. She said i have BRCA-2. I know moved into a whole different treatment. I decided right then to do one treatment at a time. No research of thinking ahead. I am now at 10 of 12 treatments of taxol/carboplatin. I have taken it a week at a time. 12 Fridays. One week later, I have 4 different ones every 2 weeks.
Today i am reading posts myself as a friend left this site and i missed sharing this journey with her.
I also will have my tubes taken and ovaries in January and a double mastectomy. Seems BRCA-2 Loves those body parts. My worst side effect has been tired. I got something to inject at home for white blood cells. My red go down. Also, constipation. I take anti nausea pills the 2, 3, 4 days after chemo. Rotate 2 different pills. Must take laxative pills. Seena is my best one. I pray every day. I have about 10 friends who know and five more in general. My 2 sisters know. ALL of them support me. My treatment came with my diagnosis. Not all of us have the same one.Tell kids is hard. I do not have kids or a husband. I was told at my Oncologists office visit it is always my choice to continue. I am in a plan with results for patients like me.
As to trials, put it in search. On this site, there are people of all kinds. What all of us share, is the cancer cure journey.
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Hello Lollypopgirl,
Just wanted to say hello, as we have both found ourselves here and dx'd in October, I received my biopsy results back just yesterday, Invasive lobular cancer. Couldn't sleep this morning, so I'm going to do a little reading with coffee and try to breath & pray a bit. My first appointment (do most start with their surgeon?) is next week. I'm already spinning a bit on what surgery might look like, because I'm in a State that has extremely low hospital resources right now. Maybe it will be a better option to travel for that?
I only received the type of cancer I have yesterday, no additional pathology information. Is that normal?
I'm truly so sorry you are going through this, but what an amazing group of people here - that are encouraging, straight-forward, and have a wealth of information. My husband & I want to talk to our kids today - they are 25 & 27, out of state, we are a pretty close family so it makes sense that we won't wait to let them know... I can't imagine them getting the news if it leaked out somewhere else. They are going to be good once it settles, but it will be a shock. I truly am the one in the family that NEVER got sick.. I joked with my husband yesterday afternoon, I can't believe I've had the best immune system of all four of us and now we are going to trash it, on purpose.
I don't know exactly what to pray for quite yet, but I think it's along the lines of "positive receptors".. (yes?), not much bigger than they could see on the US, and from my mammogram, the lymph nodes looked good. 28 x 14 x 10 mm is what the Ultrasound measured..
Take care all.
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Hello Deborra67 - I started with my surgeon and I really liked it that way. Others on here will tell a different story, but for me it was the surgeon who did the biopsies, ordered all the initial scans, and referred me to an oncologist. I have no regrets as to how that worked. He was my rock and my initial guide and I will be forever grateful to him for that. Unfortunately he retired after I was about 2 years into all this, but he saw me through the worst and most crucial parts initially (who knows what's yet to come?).
I did get an initial typing of everything back with the biopsy results, IDC, ER/PR+, HER-, and a size estimate from scans and surgeon measurements, etc. I would think your biopsies would have the ER status for you by now. As others have noted, things can change after surgery. Do you have access to a "patient portal"; something like MyChart? They post results immediately and you can read what the pathology after the biopsies says right there. Some prefer to wait for the dr to tell them, others want to see it as soon as the info is available online, but results are posted as soon as they are ready, so you can have access even before the dr. I like that feature, so I use MyChart a lot, but again, some don't and just want to hear all from the dr.
Sorry that you've had to come here, but you will find many with lots of help and tips. Best of luck to you!
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Thanks all, just a quick heads-up before I get too far in - I had good advice from somebody that my username can be searched, and it's a good idea not to have "too much" info in that name. So, Deborra67 = BernerMom from here on out.
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