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Topic: Still in shock- please tell me this gets better

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Jul 22, 2020 08:09AM

Dent51 wrote:

Have been reading this for awhile but this is my first post. Diagnosed just over a month ago and still don’t have many answers. I moved from community hospital to a major cancer center so I know that delayed things by two weeks or so.

Had lumpectomy just over a week ago and still waiting for pathology to come back on margins and nodes and then for the genetic assay. I already know I will need ovarian suppression, tamoxifen and radiation with chemo still undetermined. I am a grade 3 so already trying to prepare mentally for chemo. It has been 48 days since the tumor was found and the waiting is just draining. I know I have a lot to be grateful for but this came as such a total shock I just feel so overwhelmed and broken. I am trying to stay upbeat for my kids but inside I am just numb. I feel like there is a a fright train headed my may and there is nothing I can do about it. Please tell me this gets better.

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Jul 22, 2020 08:38AM Spookiesmom wrote:

It does get better. You are still waiting and that is THE worst. Once you have a plan, and actually start treatment, it gets better. Maybe not easier, but you will feel like you have some control. There may be more tests to determine exactly what treatment is needed. Your job is to show up for them. I felt like pitching a tent at my hospital was so many tests.

It’s not an automatic death sentence either, so get that out of your head now. I’m stage 4 now, and plan on being here many more years. And many here have been, and are doing well.

You can do it!

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Jul 22, 2020 08:52AM edj3 wrote:

Chiming in to agree with Spookie--I found the waiting for everything to come together, all tests completed, all results received and analyzed, all genetic testing complete, all of that was so hard. And I think Spookie hit the nail on the head. Once you have a treatment plan and you actually start it, the mental side is much better.

Disclaimer, I didn't need chemo so I wouldn't ever say anything about that experience because I'd just be running my mouth. But the surgery, radiation and my brief attempt to take tamoxifen? Those I can speak to and even with side effects, none of that was as mentally and emotionally draining as the place you're in right now.

You are not alone.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2020 10:49AM claireinaz wrote:

The way I looked at it while waiting was that the lumpectomy got all the cancer out of my body, and that I might need some "clean up maintenance", but that kind of perspective helped me cope.

It does get better, but remember to also make a space for your fear, because it's very right to feel fear, worry, and sometimes terror (I had moments of terror). Your life is being threatened, and heck yes, you are right to feel the way you do.

I also asked my surgeon for an rx of Xanax-.25 mg. and I took a half tab when I needed which is a very small amount, and it helped, and didn't zone me out.

Big hugs--

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jul 22, 2020 11:56AM Dent51 wrote:

Thank you all for your replies. I am sure you are right that once I know the plan it will help. I feel like l am living in limbo not being able to commit to plans at work and for my kids because I don’t know if the next four months are going to consumed with chemo. Not to mention dealing with chemo during Covid and how that will affect my ability to work and interact with my kids. Covid has also really limited my interactions with friends and neighbors. Not wanting to tell people that I have cancer via email or text I have not told any friends yet. This forum is help to know that you are not alone because most of the time it sure does feel that way

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Jul 22, 2020 12:55PM edj3 wrote:

Honestly that's why I and others stick around after our initial dx and treatment. I know this place was a lifeline for me and I hope to pay it back for others who come in reeling from all the uncertainties they're facing.

Which is my long-winded way of saying vent any time. And let us know what your path reports say.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2020 01:32PM Spookiesmom wrote:

Me too edj3. Wanted to add, you don’t have to tell anybody right away. You can wait till your plan is in place. And maybe not even then. As for chemo, some ladies are able to work during, others arrange to get it on Friday to have the weekend to recover. Others take time off. It’s all about YOU now. Don’t try to be strong for others. If you find you need help, ask.

Yes, this is a safe place to vent, and to ask questions you may think are dumb. They aren’t. So fire away.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Jul 22, 2020 03:32PM Smichaels11 wrote:

I'm so sorry you have to deal with. I'm sorry anyone has to. Know you are not alone. Now that I have my diagnosis and treatment has begun (I had my second chemo neoadjuvent today, actually), I find the moments of terror to come around much less. I still have them, but it's not all consuming and I have anti anxiety meds which help. This site has been a lifeline. These women, and some men, have been there done that and lived to tell the story.

Chemo, while no picnic, is not our grandma's chemo. Medicine has come a long way and the doctors and nurses provide SO many meds to help nail any side effects you may experience. Covid is complicating everything and I feel badly I cant go anywhere right now, but even non cancer patients are feeling it too. Losing my hair sucked big time, but there are cold caps you can look into to try and save it or minimize the loss. I didnt go that route, but there are threads about here. I bought a human hair wig, and if I didnt tell you I was in chemo you would have no idea.

Also- Google doesnt know your cancer. There is no one size fits all. Google is full of outdated info that generalizes everything and prays on fear. Okay, that last part is my opinion lol. Your oncologist is your Google, so write down all of your questions and take them with you to your appointments. If your center allows it, bring someone with you. I thought I was paying attention but my SO picked up lots of info that I missed. If you cant take someone with you, ask if you can record it on your phone to play back later.

Best of luck!! ❤

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Jul 23, 2020 12:11AM AliceBastable wrote:

If you can't take someone with you to appointments, ask for permission to record the visit.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Jul 23, 2020 08:22AM Dent51 wrote:

Hi Smichaels11

Thank you for your concern and for sharing your story. It helps. I think we were diagnosed about the same time ( mine 6/11/20) and you seem to be moving at a rapid pace if you are on your second chemo already. I know Neoadjuvant moves much faster and I guess in some ways that good but also does not give you much time to prepare and process. I am glad that so far you are tolerating the chemo OK. Still have my fingers crossed on not needing chemo but going to look into both the cold capping and wig to be prepared. Seems like everything surrounding the cancer is a long wait and then rapid decisions. No visitors allowed in the entire cancer center except for parents of children. So will probably have my husband on the phone so he can listen for MO visit. I think it helps him understand everything too.

Stay strong!

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Jul 23, 2020 10:09AM pingpong1953 wrote:

I agree with recording your appointment. Definitely have your husband on the phone, because he's going to think of questions you haven't considered. Your head is going to be swimming for a while, but once you get a plan in place you'll feel much better. I was already retired when I was diagnosed, and I don't have young children, so I can't give you any tips on how to navigate that part of your life. But lots of women on this forum have been there and can help you. (Although doing all this during a pandemic is quite a wrinkle!)

I was afraid of the chemo, but it ended up being much easier than I'd anticipated. That was a nice surprise.

After a while you'll find it's just another part of your life. Then you'll be able to reassure newcomers who are right where you are now!

Dx 4/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 5/2/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/4/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 12/7/2017 Femara (letrozole) Surgery 2/27/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Right

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