HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 02-07-2015, 03:50 AM   #1
JessicaV
Senior Member
 
JessicaV's Avatar
 
Join Date: Apr 2014
Posts: 206
My projects: your advice would be appreciated.

Hi, I wondered if I could ask your help and advice about a couple of projects I am embarking on in fear, humility and trepidation.

I am an analytical psychologist in Australia training in Jungian Analysis, currently not working because of chemo-induced cognitive and physical fatigue, and trying to find my path back into my vocation and confidence.

First I want to write a book for the newly diagnosed about how to go about taking really good care of ourselves through the diagnosis, treatment and "come-what-may" of breast cancer. The mindset it takes. The skills we have to hone. Basically what we do that helps and how we use our minds and hearts and intuition and energy and friends and time etc to create a mindset that allows us to live effectively and well despite or even because of our cancer.

I have learnt so much from others, and would love to tap into your wisdom if you have things you would be prepared to share.

Also, I heard my oncologist speak today about the problem of non-compliance with treatment program which result in patients getting less than the 86% of the drug program that worked in trials, and that then leaves them much more likely to get metastatic cancer.

She said this is often because the patient sits and says how bad the fatigue, joint pain, hot flushes etc are, and how unbearable they are, until she has to say do you want me to cut your dose and reduce your side effects, even if it means you are more likely to get metastatic cancer. And she knows many other oncs just give in without asking the question. 56% of US patients do not get this minimum recommended dose.

I'd love to research this. My first thought is that I'd like to just find out what is happening from the patient point of view.

Then I wondered whether the communication is actually going awry between patient and onc.

Patients are taught that they should tell their oncs what symptoms they have so the onc knows the facts and can monitor them properly. Patients often also need to have someone in charge hear their anguish, pain, and distress. Patients may not be expecting oncs to say they will cut the dose, they may be expecting oncs to say,"It is a really hard process, and I respect how brave you are and how much strength you show in taking it on the chin."

I would love to know what you think, and if you think either of these could be of use. Any comments gratefully accepted
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

JessicaV is offline   Reply With Quote
Old 02-07-2015, 06:02 AM   #2
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
Re: My projects: your advice would be appreciated.

Hello Jessica,
I think a book or booklet about this could be very helpful. If you look on this site you will find that many people couldn't take the Aromatase inhibitors (tamoxifen, Femara) as long as proscribed due to side effects. I remember, myself, being told after weekly chemo for 4 months that I should consider a chemo break by the chemo doctor. I said no, I wanted to do it straight through. the very next week I had an anxiety attack when they wheeled in the chemo. The panic attack lasted about 20 minutes and I was able to take the chemo but I realized that however "strong" we try to be, we can sometimes be overwhelmed. However I do not think talking about this with the oncologist is productive and wastes his/her time. Better to bring this up to a support group or a cancer buddy (believe me having someone who has been through this to talk to is extremely important - this site is a perfect example) that is the best solution. These people know how they have coped and how to keep on through those difficult times. I think knowing what may help a person comply would be very helpful. As someone who is part of an active support group, I would like to know anything helpful to tell our cancer patients - ours are not just bc but mainly bc.
Go ahead with your idea. Not only will it help you but possibly many others.
Good luck
Sarah
__________________
sarah is offline   Reply With Quote
Old 02-09-2015, 09:48 AM   #3
JessicaV
Senior Member
 
JessicaV's Avatar
 
Join Date: Apr 2014
Posts: 206
Re: My projects: your advice would be appreciated.

Hi Sarah, thanks so much for your thoughts and encouragements.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

JessicaV is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 12:37 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter