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Old 10-12-2016, 08:04 AM   #1
Senior Member
Join Date: Sep 2016
Posts: 459

Hello all,

I was just wondering how you deal with anxiety? I have been having anxiety on and off since I was told that my cancer has spread, and Iím not sure how to deal with it. There are times when I feel very positive, and Iím sure the medication is going to work and put me in remission, and there are other times when I just sit there and think that the cancer is spreading. Right now, we think itís only spread to my lungs (test results show bones, liver, stomach, etc. look good), but we have not done a brain MRI yet (Iím still waiting for an appointment), and Iím really worried that itís spread to my brain. I donít have symptoms, however, I canít stop thinking about it spreading! Also, every time something is wrong with me now, I think itís the cancer, even when itís just a pimple! I mentioned this anxiety to both my doctor and nurse practitioner, and they both said it was normal, but didnít give me any advice regarding how to deal with it. I was wondering if anyone can give me some ideas. I have tried mediating at home, but it doesnít seem to be working. I try to keep busy with work and friends, and I try to focus on reading or watching TV when Iím at home, in order to keep my mind off of things, but some days itís harder than others. Any suggestions would be much appreciated.
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Old 10-12-2016, 08:20 AM   #2
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Join Date: May 2013
Posts: 568
Re: Anxiety

You've already named all the strategies I use. Many people medicate, I haven't reached that point. I try to walk it out of my system. Getting outside is my happy place. I really suffer in the Winter as I hate going outside in the cold. Anxiety is to be expected and is "normal" for us but your medical need should take it very seriously. I am surprised you weren't offered counseling, support groups or medications.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 10-12-2016, 08:51 AM   #3
Senior Member
Join Date: Sep 2016
Posts: 459
Re: Anxiety

Thanks Tracy. I also walk a lot, even in the winter, and I do find it helps. That being said, I’m starting to feel a heaviness in my chest on and off from the anxiety. At first I thought this was the cancer, however, it comes and goes based on how I’m feeling mentally, so I think it’s anxiety. I will be seeing my nurse practitioner before treatment next Tuesday (my Doctor is at a conference in Copenhagen) and I will mention it to her again. I do have access to a social worker at the hospitable where I get treatment, and I may ask to speak to her next Tuesday as well. I’m really trying to stay positive, but I’m having a hard time. I took my first CEA blood test last week, and I’ll get the results on Tuesday. As I’ve never done one before, we won’t know based on my tumour markers if the treatment is working yet, but at least I’ll know what my tumour markers are. I’m hoping they are not that high, however, given all of the bad news I have received recently, I’m not sure. Waiting for this test result is also giving me anxiety, and I just need some good news for once!fficeffice" />>>
> >
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Old 10-18-2016, 02:09 AM   #4
Join Date: May 2014
Posts: 26
Re: Anxiety

I understand that dealing with anxiety is real difficult. But almost everyone nowadays are fighting so hard for a cancer cure. No one could be very sure of the things that will come next but we have to be positive and just put our trust and belief in God that everything will be okay. Prayer is always a big answer to all our ailments and hardships in life. Just try to see the good things always.
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Old 10-19-2016, 04:42 AM   #5
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Join Date: Sep 2016
Posts: 459
Re: Anxiety

Thanks. I saw my doctor yesterday, and she gave me a prescription for ativan, in case I need it. Iím going to try not to take it though unless itís necessary. I also spoke to my social worker, whoís going to email me some different techniques to try, and I have an appointment with the clinicís psychiatrist on November 7. For me, the worst part is the not knowing. Once I know for sure that the Perjeta is working, I think I will feel more positive, although, Iím sure Iíll then start worrying about how long it will work. I guess the anxiety never ends for people like us!
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Old 10-19-2016, 11:47 AM   #6
Cheryl Edwards
Join Date: Sep 2016
Posts: 7
Re: Anxiety

Just keep praying and I am sure everything will turn out fine.
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Old 10-20-2016, 02:09 AM   #7
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 478
Re: Anxiety

Tiffany, you are right to say the anxiety never ends. However I guess we learn some degree of acceptance, except for scan times! I agree with Tracy that physical activity is really helpful, and meditation is also worth a try. But basically we need to come to terms with uncertainty being a constant in our lives - and trying to make the most of whatever time we have. Best wishes..... Pam
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 10-20-2016, 04:56 AM   #8
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Join Date: Sep 2016
Posts: 459
Re: Anxiety

Thanks Pam. I am starting to realize that this is my life now, and I have to get used to the constant anxiety, hospital visits for treatments, and endless doctor’s appointments and scans, etc. I guess I will learn to adjust. My anxiety has been a better since I saw my doctor and social worker on Tuesday, and I am hoping to be able to learn to cope better with it in the future. It’s hard, because I’m usually a very positive person, and, before I found out I had a recurrence and lung mets, I really thought I would beat cancer and move on with my life. I think that’s why the news hit me so hard, because I was so positive during my first round of treatment, and yet it didn’t work! I can’t bring myself to feel positive with this round of treatment, because I don’t want to set myself up for disappointment again. I guess I’m hoping for the best, but expecting the worst.

12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!
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Old 04-18-2019, 06:37 AM   #9
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Join Date: Apr 2019
Posts: 2
Re: Anxiety

In my view, anxiety is about one's relationship to uncertainty. And there are definitely things one can do to suffer less about uncertainty. I am offering what has worked for me, since I have walked the path of out of control anxiety, and know what a *B* it is to experience. So here is my perspective: Take it, or leave it. This is a faith issue. This is about *the god shaped hole* that we all suffer with. You will NEVER be able to create certainty in all areas of your life. So, the remedy is to work on your relationship with uncertainty. Or, the mystery, as some people call it. I cured my own anxiety through prayer. Not by prayer that it go away, and having it disappear. But rather, by using prayer, putting trust is something beyond my own ability to understand, and letting my own mind relax into the unknown. I used my anxiety as a *bell*, that is, when I felt anxious, I would say a prayer, or a mantra, and that helped discipline my mind, to not be like a runaway dog. One of my favorite mantras is this: I am as God created me. It is so simple, but it is deep. And I can pull that out in any situation and start to feel relief, immediately. So, that is my offering to anyone who is suffering. This is about how much you trust life. Actively cultivating trust in life, is the cure to anxiety. Self medicating as well as solely relying on medicine isn't an option, though there were periods in my life when I trusted traditional medicine more. I started doing yoga as well as drinking shilajit tea and according to this study https://purblack.com/moomiyo-extract-super-yogis/ it helps, and indeed it did. Still, now I solely rely on healthy diet and healthy lifestyle. And I think if there're signs of anxiety and depression, you should see a professional. The quality of medical information available to the public is worse than poor. It's "dumbed down" and used, in many cases, to sell something on the website. Medical professionals have access to the full text of research papers; which are far more informative. Much of that material is behind paywalls, and unless you work at a medical company or research university it's "invisible". For example, the National Institutes of Health (https://www.nih.gov/) maintains an on-line catalog of all medical research. It's a project that goes back over 35 years. Best wishes!
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