November 2023
1 Kudo
Hello Claude, I'm so sorry you have experienced all these health problems. I was diagnosed with Hodgkin's Lymphoma when I was 22. I underwent chemotherapy and radiotherapy. I have been in remission ever since. However, since completing treatment, I have experienced health issues including hypothyroidism, a benign pituitary tumour, a benign skin tumour and, more recently, breast cancer. I am fortunate to have undergone treatment at Peter Mac. I am now on longterm follow up with their Late Effects Clinic. I highly recommend getting in touch with this service especially if you have undergone cancer treatment as a child or as a young adult (18-25) as this is their area of specialty. You don't need to have undergone treatment at Peter Mac to access this clinic. They can review your past treatment, identify possible late effects, formulate a follow up plan and make referrals to other health care professionals. For example, I commenced breast cancer surveillance before I turned 30. This is done through the breast clinic at Peter Mac (they provide screening for people who are high risk for developing breast cancer). Because I have been able to access breast MRIs through this clinic, my breast cancer was detected early. I underwent surgery but have not needed chemotherapy (thank goodness!). If you are looking for further resources on late effects and follow up, I recommend Peter Mac's website (look for the Australian Cancer Survivorship Centre), Canteen and The Leukaemia Foundation. Wishing you all the best, flight.
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February 2019
Hi Kate. Lots of useful information tonight. I am trying to find information regarding breast cancer screening for young women post treatment for hodgkin's lymphoma. Are there treatment guidelines regarding this? Most of the information I have found targets older women
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February 2019
Hi Kate. I found the information very helpful. Found a few new resources to go and check out. I am interested in finding out if guidelines have been developed regarding breast cancer screening for young women post treatment of hodgkin's lymphoma. I am having difficulty finding information about this- it focuses on older women. Thanks for your help.
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July 2012
Hi Alana,
Hope this has been useful in some way. As a young person undergoing treatment it can be very difficult and frustrating trying to find information and support that is relevant to your own situation. I know how much it has meant to me to meet people closer to my own age who have undergone treatment.
Cancer support that is specific to young adults is a fairly new concept in Australia as is the concept of survivorship. There are supports out there but there is still a long way to go.
The Livestrong website (Lance Armstrong's cancer support organisation) has some terrific resources and supports for young adults too.
Hope all is going well with you. Don't forget to send us an update on how you are going with treatment too.
All the best,
Flight
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July 2012
Hi Alana,
I had chemo (ABVD) and radiotherapy for hodgkin's in 2001.
Have you had any contact with the Leukaemia Foundation? I have attended a support group that they run for people living with lymphoma. They also run patient seminars on a range of topics related to blood cancers and treatment. They host a web based forum and telephone support groups too. They also provide printed resources on topics including Hodgkins, Chemo and Stem Cell Transplants. They have also developed a printed resource for young adults diagnosed with blood cancer.
Peter Mac has a program for young adults. It is called OnTrac@PeterMac. They provide a range of services for young people affected by cancer and you don't need to be a Peter Mac patient to access some of their services. You can look them up on the Peter Mac Website.
Canteen provides various support programs to young adults up to 25 years. And don't forget the cancer council. If you ring their helpline they will discuss the various support groups that they run including internet and telephone support services.
The nurses on the helpline are very good shoulders to cry on on those more difficult, scarey days too.
I hope that treatment is going well for you.
Regards,
Flight
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December 2011
I have been fortunate to discover a copy of "The Cancer Survivor's Companion" through my local libray. It is written by Dr Frances Goodhart, a clinical psychologist who consults with the Macmillan Cancer Support Service in the UK.
The book provides useful strategies for dealing with worry and anxiety, depression and low mood, anger, self esteem and body image, relationships and sexuality, fatigue, sleep and relaxation.
The book is an excellent resource for people who have completed treatment as well as people who are undergoing treatment for cancer. It provides useful strategies for patients as well as hints and advice to family and friends.
My favourite chapters were on dealing with anxiety and changes to body image. The chapter on anxiety discusses common worries surrounding cancer including check ups, relapse and worries about the future. One of the things that I found really helpful was that the book acknowledges that it is normal to feel worried about these issues. The book goes on to examines common thought errors that cause anxiety and provides useful strategies for the reader to try.
I also liked the chapter on body image. The chapter talks about acknowledging the changes that have occurred as a result of cancer treatment and allowing yourself time to greive your losses. It goes on to discuss dealing with comments (or silences)from people you know (and well meaning strangers)in response to physical changes, for example- hair loss and scars.
I highly reccommend this book- I wish it was available through the cancer council (although,I did see a copy at my local book shop).
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May 2011
Hi,
I highly reccommend the In Touch group that is available on this website. It is facilitated by Kate (from Cancer Council Vic) and meets fortnightly. It offers the opportunity to meet with other people who have had cancer in an online forum that is held in real time. We discuss all topics and issues related to cancer treatment and survivorship. The next session will be held on 12 May.
From
Flight
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January 2011
Hi,
I found this resource "Maybe Later, Baby- A guide to fertility for young people with cancer".
There is information on fertility in males and females. It discusses a range of topics such as options for preserving fertility pre treatment, the effect of chemo and radiotherapy on fertility, what is infertility and what is involved in fertility testing post treatment.
It also emphasises the importance of discussing fertility options with your doctor prior to undergoing treatment.
The link to this resource is :
www.nowwhat.org.au/about/resources/maybe-later-baby-a-guide-to-fertility-for-young-people-with-cancer .
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November 2010
I found some helpful resources on the website for Sloan Kettering Memorial Hosital that focus on survivorship. The topics inlcude sexual health, fertility, coping strategies, late effects, reducing health risks in cancer survivors, second malignanices and survivorship care plans. Here is the link: www.mskcc.org/mskcc/html/92631.cfm.
Flight
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November 2010
I've been reading some articles on cancer survivorship. I would like to get involved in that area. Has anyone been involved in volunteer work in that area? What did your role involve? How did you become involved?
Flight
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