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Amy48 View Drop Down
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    Posted: Nov 02 2022 at 8:45pm
Hi Everyone!
I am new here and absolutely terrified! I just got my pathology report and Negative ER and PR and Negative HER2. I guess this is where all of the tough cookies hang out! My tumor is 5 cm. (This one terrifies me the most) It is not in my lymph nodes. My current worry is my nagging cough and I am scared that it has metastasized to my lungs. I am scared that chemo is not going to work, I am scared of a mastectomy. Has anyone been through all of this mess with a large tumor also? I am crazy terrified and causing myself lots of anxiety. Please help me! 

Amy
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2022 at 10:57pm
Hi Amy, I'm so sorry about your path report we all understand how terrifying it can be!  But lets' take a deep breath and remember that this is treatable. Yes I've been weathering this storm off and on for 6 years. My mass was smaller than yours but I have been through many treatments and I am currently on chemo and immunotherapy.

So what is the plan regarding your cough? Chest xray, CT Chest?
Do you have a surgery date yet? Once you get things going with chemo and surgery you will feel relief that a plan is in place. Did you have genetic testing yet? I know this is all so very scary but you need to just take it one step at a time. One of my favorite sayings that I tell my kids is not to look at the whole staircase but just one step! It can be very overwhelming with all the decisions that are involved with this. This fight to me is more of a mental than a physical fight. We have surgery and our wounds heal but mentally we have to work on ourselves. You need to feed your mind with positive thoughts of the chemo killing bad cells and you winning the war!

I hope I eased your mind a bit. If you have any questions regarding mastectomy or treatment I am happy to help. You are not alone, big hugs and positive vibes to you. Andrea
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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rickles View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2022 at 8:40am
Hi Amy,   I am sending you lots of positive vibes and a big virtual hug this morning. I understand how overwhelming it can be to receive a diagnosis of TNBC. Andrea’s recommendation about not looking at the entire staircase but only one step at a time was right on. 
 My journey began 7/2021 with a diagnosis of TNBC, 3cm in size, lymph nodes negative. I went through surgery, chemo and radiation. Now here it is 16 months later I just had my first follow up mammogram which showed no signs of cancer! Looking back to this time last year was a whole different picture. I was in the middle of my chemo regime and feeling terrible. But thanks to my excellent oncology team I am in a much better place today. I hope and pray that you too will have a good outcome as well. I got through it by taking one step at a time. I would tell myself “ok I have completed 1/4 of the plan, 3/4 to go.” I would go on with this until I finished 4 out of 4. It felt like I would never see the light at the end of the tunnel but I did.
 One other thought regarding your cough. I also had a cough and some swelling above my clavicles. I had an ultrasound done of my neck and incidentally found a nodule on my thyroid. It was benign and I had it ablated after my treatments were finished. The nodule was pressing on my airway. Once I had it ablated my cough was gone, swallowing improved as well as my voice. I don’t know the cause of your cough but this might be something for you to keep in the back of your mind.
 Take care and I wish you all the best. Diane 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2022 at 10:09pm
Hi Amy,
Stay positive! I went through chemo/ mastectomy/ hysterectomy. I was diagnosed in October 2020 with 1.5 cm triple negative tumor/nodes negative.  I was also on a chemo pill for one year after my primary treatment ended.

From my experience, the toughest part is diagnosis and all the screening tests. It gets better once you start the treatment, taking one step at a time.

Regrading the cough, hope you are getting all tests done that your oncologist recommends. I also had nagging cough and frequent headaches. My brain MRI was clear but in my PET scan and chest CT, a nodule was found (that scared me the most). No further tests could be done, so I proceeded with my treatment. Two years later, I have no lung nodules in my CT.

Hope this makes you feel better. Please don't hesitate to reach out if you have any questions. We are here for you!

Wising you the best,
Vibha

11/3/20 IDC 2cm, brca1+, AC-T neoadjuvant treatment, bi-MX 5/26/21, Hysterect 7/19/21, Olaparib (Lynpraza) 8/5/21,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2022 at 5:56pm
Hi Amy,
I was in a very similar situation when I was diagnosed in May 2018 at 54 yrs. old. Healthy, runner, non drinker, non smoker and dietitian by profession. It was shocking.  I had an excisional biopsy (basically lumpectomy) 1.7 cm of invasive TNBC. MRI showed another 48 mm of disease. They estimated my tumor around 5 cm. Lymph nodes and genetic testing negative. I was terrified like you, especially since I was had very small breasts. Couldn't wrap my head around the size of the tumor

I had a double mastectomy, followed by dose dense AC/T. Also, like you I had a persistent nagging cough. They did a chest x ray which was negative prior to surgery and chemo. I didn't want anything to delay my treatment so I forged ahead. I'll admit it was hard going through chemo with a cough, but in the end made it through! After chemo I had chest CT and pulmonary function tests that were pretty normal. I actually found the surgery fairly easy to get through. Never had reconstruction because it would have delayed treatment
My oncologist would not do testing after surgery and chemo so I went for a second opinion. Steve, the wonderful advocate on this site was on the phone throughout the session for support. The oncologist there told me its not just the size of the tumor, but more importantly the "biology" of the tumor. She told me she had good luck with her TNBC patients who are "node negative"  

Please take whatever positive messages you can get and hold on to them. Time helps too. I have learned to live more in the present. I agree with the others who replied. Take one step at a time. Just wanted to offer you some hope. Like you, I had a big tumor and I'm still here with no evidence of disease 4 1/2 yrs later.  Please keep us posted on your journey
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2022 at 6:40pm
Congrats Debbie on 4 1/2 years!!  I love hearing positive outcomes, thanks for sharing.
Agree, this teaches us all to cherish each day and stay present. Wishing you continued health.
Andrea
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 11:21am
Hi Amy,

It's normal to be terrified when first diagnosed.  I think we all had those same feelings.  I know several women who had large tumors that responded very well to treatment and still no evidence of disease years later.  Have you had any scans?  Are you starting chemo first? 

Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2022 at 9:36am
Thank you sooo very much everyone for the advice! I am sooo glad that I found you :) I am getting ready to go in this morning for my port placement and begin fighting against TNBC. The port has been the thing that I am the most worried about but I am trying to look at as, this port is going to save my life :)
I begin Chemo tomorrow morning with Taxol and happy that I am able to start now to get this done.
You guys are such an inspiration to me and I hope to be like you one day and help someone else also!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2022 at 10:13am
Good luck today Amy! I've had port placement twice over the years, it will be ok. Sending positive vibes for tomorrow as you begin chemo. yes start a countdown to the finish line.Hug
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2022 at 11:01am
Hi Amy! 

Good luck today.  You'll find the port is amazing for getting chemo.  It will save your veins and makes treatment so much easier.  Keep us posted on how you are doing.  You've got this! PS:  I'm from Missouri too.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2022 at 10:53pm
Hello Everyone!
I did get my port and I am still here! I got my first infusion today of taxol and carboplatin. I am feeling pretty good tonight because I feel like it's my turn to fight. So far, things are going well. No horrible side effects that I can't deal with. I know they are coming but for now I am just going to go ahead and check my very first Chemo off my list! Embarrassed
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2022 at 9:17am
You got this Amy!Way to go checking off the list! Take care of yourself. You may have to dial back on your normal daily routine for a time but that’s okay. You have the perfect excuse to say      ”sorry I will not be able to do…” Pamper yourself! Get plenty of rest, drink lots of fluids, wear your mask and avoid crowds and large family gatherings. We are here for you. 
🤗 Diane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2022 at 10:15am
Ohhhh I love this idea!!  Thank you Diane! So happy to have you 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2022 at 9:09pm
Glad to hear Amy! I recently made a count down calendar book with positive quotes for a good friend who started chemo. It helps to see an end goal and count it down to the end! Even if you just check it off a calendar it's a sense of accomplishment.

Yes rest up and take good care of yourself especially with this cold and flu season starting.
We want smooth sailing for youThumbs Up
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2022 at 3:18pm
Hi Amy-

All of us on this forum were probably shocked and terrified at the time of diagnosis.  I was a perfectly healthy and fit 66 year old and then…bam!  Blindsided by this news.  I am almost three years out now and the rest of my bio can be seen somewhere in these threads.

The reason I am joining in is to reiterate what I have mentioned before.  If you have questions about diet, supplements, exercise and homeopathic aids, I would highly recommend an integrative medicine doctor.  My oncologist was wonderful, but he did not have the time or expertise to answer all of my questions.  It was he who recommend this type of doctor to add to my team.  My IM doctor typed recommendations as we were talking about my issues and concerns, and I left with a print out just for me-not boiler plate list from the internet.  He did not try to sell me a thing.  These doctors are an out of pocket expense, but I felt it was money well spent.  I still consult with him as my situation changes.  

I am not a doctor but I would also recommend that you have your Vitamin D level checked.  Mine was at the low end of range when I was diagnosed and I now take a supplement to give it a boost.  Others have mentioned this also.

This journey is not a piece of cake but just focus on putting one foot in front of the other and giving yourself grace on the days that you don’t feel well.  You can do it!  

Best wishes, 
Cindy


Edited by CMDW - Nov 18 2022 at 10:29pm
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2022 at 3:12pm
Hello Girls!
I am a little confused. My surgeon ordered an MRI and it showed at minimum 5 abnormal looking lymph nodes. 2 of the 5 were biopsied and came back negative in October. So now, she wants to biopsy them again. She also found a few more masses and ugly lymph nodes in my breast and is recommending a mastectomy at surgery time. I am just so worried that I am stage 4 now :( 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2022 at 7:45pm
Hi Amy, I'm sorry that things are getting a little sticky. Obviously so important to have the whole picture before surgery. So besides the biopsies of the nodes that are done at the time of surgery she wants them repeated before surgery? 

Remember this, just because it is in the local nodes near the breast that doesn't necessarily make it stage 4. If it is still local and no distant metastasis like to the liver, bone etc it's a locoregional recurrence. When I had positive nodes at the time I was considered stage 3C. She may consider a PET Scan also to check before surgery. I know how hard it is to keep your mind from going there, it's only natural. This is still very treatable and you will feel better once you get things going!
Many of us have had a mastectomies including myself and you will be ok. Ask lots of questions so you can feel as comfortable as possible with her recommendations.

Big hugs, keep us posted. We are always here for you!
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Amy48 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2022 at 8:19pm
Hi Cookie!
I originally had 2 enlarged lymph nodes biopsied when I had my tumor biopsy. The lymph nodes came back benign. She wanted an MRI because she saw some calcifications and my MRI showed at least 5 abnormal shaped axillary lymph nodes so she wants another biopsy done of an axillary lymph node. I am so scared
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 20 2022 at 7:53am
Ok well that makes sense, ugh but sorry you have to go through another biopsy. I had so many over the years I was losing count !I know it's a necessary evil and you will feel a little better knowing everything was covered. Yes this is all so scary and it's ok to be scared! We all have felt or feel scared too. Sometimes I think the world expects us to be "rah rah" breast cancer you are a warrior. Don't get me wrong I am one of the most positive ,strong people out there. It's ok to be scared, sad, mad and so many other emotions that go along with this diagnosis. I always say have your pity party and move on. As long as when we get knocked down we get up again and continue to fight. Big big hugs for youHugHug

How is chemo going? I know you were starting last week. Hope you are feeling ok.

8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Amy48 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy48 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 20 2022 at 8:10pm
Thank you Cookie! It really is a scary ride that I cannot wait to get off of! I have had 2 doses of Taxol and Carbolatin and I am not feeling that yucky yet. They have given me medicine for any symptom that I could get so that's good. 
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