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This is a summary of the best websites relevant to the subject of fertility in relation to cancers and their treatments I could find on the net, both for information and for forums (message or discussion boards) and other kinds of support. For those living in the Australian region I'm currently developing a section on Australian fertility websites here.
Before I discuss specific websites, there's one point I need to emphasise for those just diagnosed. It's important that if you have recently been diagnosed with a cancer problem, and you may wish to have one or more children in the future, that you inform your doctor and your medical team about your fertility needs, and if possible discuss fertility issues with your doctor and medical team before decisions are made about treatments for your cancer problem. Don't rely on them to bring the subject up - they may not do it as their first concern will be for your immediate health and safety.
Supporters can help by making sure fertility is on the list of items to be discussed, and perhaps even initiating a discussion if you're attending medical appointments.
There are two good reasons for discussing fertility matters before any treatment decisions are made. The first is that some treatments for cancers can lessen your fertility or even cause permanent infertility in some cases. But fortunately there are often different treatment options available so you and your medical team can choose treatments which maximise your chances of being fertile in the future. Treatments for many cancers can be delayed for a while until fertility issues have been addressed.
The second reason is that if you think your fertility is going to be impaired in the future either by the cancer itself or by the recommended treatments, you may want to consider the options of preserving embryos, or eggs, or sperm, or some other procedure that preserves reproductive cells or tissue for future use. Usually these procedures either need to be done or are best done before treatment starts.
The American Society of Clinical Oncology has recently published an important scientific paper called "American Society of Clinical Oncology Recommendations on Fertility Preservation in Cancer Patients". The paper is especially relevant to those who have been newly diagnosed with cancer who wish to retain their fertility, and for members of the medical profession who may be advising newly diagnosed patients on treatment regimes.
Here are some quotes from the paper:
"The purpose of this guideline is to review the literature pertaining to fertility preservation options for men, women, and children undergoing cancer treatment, and to give guidance to oncologists about these issues."
"RECOMMENDATIONS: As part of education and informed consent before cancer therapy, oncologists should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists. Clinician judgment should be employed in the timing of raising this issue, but discussion at the earliest possible opportunity is encouraged. Sperm and embryo cryopreservation are considered standard practice and are widely available; other available fertility preservation methods should be considered investigational and be performed in centers with the necessary expertise."
"CONCLUSION: Fertility preservation is often possible in people undergoing treatment for cancer. To preserve the full range of options, fertility preservation approaches should be considered as early as possible during treatment planning."
The full text of the scientific paper can be found here www.jco.org/cgi/content/full/24/18/2917 and a patient-friendly "ASCO Patient Guide: Fertility Preservation" can be found here.
I suggest browsing through the scientific paper whether or not you read the patient-friendly guide, even if you don't understand some of it - that way you get the information straight from the people who reviewed the scientific literature and prepared the guidelines.
Websites devoted to fertility issues relating to cancers
As far as I know there is no one website that covers all issues relating to fertility and cancer. And there is no one cancer forum on fertility issues where the majority of people go to ask questions and discuss fertility concerns. So you may need to check out a range of websites to find information and support appropriate to your situation.
The development of forums specifically for those with cancer and fertility concerns is only in its early stages at present. A good strategy is to post onto more than one forum because you will reach a bigger audience and there's more opportunity for finding people who have similar concerns to your own.
The US organisation Fertile Hope at www.fertilehope.org "is a national nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility". They say "The organization was founded in 2001 by cancer survivor Lindsay Nohr as a result of her own endeavors to preserve her fertility in the face of critical cancer treatments". This is the best website I could find devoted to information on fertility issues as they relate to all cancers and their treatments.
Fertile Hope also has some forums (discussion or message boards) on fertility and cancer. They are the only group of forums I could find devoted entirely to fertility and cancer issues. In the first half of 2008 when I last checked they only received an occasional post so I suggest that if you post into the Fertile Hope forums you also post in other forums or mailing lists I mention further down this page. To find the forums, put your mouse pointer over the words "Find Support" you will see on the left side of the home page and click on "Message Boards". Or try this direct link www.fertilehope.invisionzone.com/index.php?.
For those with a breast cancer involvement
The organisation Breastcancer.org has quite a lot of information about fertility issues relating to breast cancer and its treatment on their website www.breastcancer.org. To find it, try this direct link www.breastcancer.org/fertility_pregnancy_adoption.html. On the left side of the page that displays you can see links to the different sections on the topic (you may need to scroll down the page a bit).
Alternatively go to their home page and click on the link 'Recovery and Renewal' near the top of the page. On the new page that displays click on the link 'Fertility, Pregnancy, Adoption'. Or type fertility into the search window at the top of the home page and click on Go.They also have very good and very active forums (message boards) and although none of them are specifically devoted to fertility, if you post onto one of the more popular forums you will probably get some responses.
The website of the organisation Young Survival Coalition at www.youngsurvival.org is specifically designed for younger people (under age 41) "the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer.” They have a forum called ‘Fertility & pregnancy after breast cancer’ which was pretty active when I last checked it on 23rd June 2008 - the direct link to their forum index page is www.youngsurvival.org/community/bulletin-board/.
For those with a testicular cancer involvement
Firstly a reminder that if you've just been diagnosed with testicular cancer and you may want to father any children in the future, it's really important to discuss fertility issues with your medical team before treatment commences. Semen can be frozen and stored for later use if necessary (sperm banking) and it's a simple procedure.
I've not found any website that give a comprehensive discussion of all facets of fertility issues in relation to testicular cancer.
There is a very good and easy to understand discussion about male infertility and cancer on the Lance Armstrong Foundation's Livestrong website www.livestrong.org on this page www.livestrong.org/site/c.khLXK1PxHmF/b.2660703/k.33CA/Physical_Effects_Male_Infertility.htm.
These webpages give brief overviews of fertility issues www.andrologyaustralia.org/pageContent.asp?pageCode=SPERMSTORAGE www.cancerbackup.org.uk/Cancertype/Testes/Aftertreatment/Sexlifefertility .
There are two very good testicular cancer websites where you can find some information about male fertility and testicular cancer.
The Testicular Cancer Resource Center at http://tcrc.acor.org has a Fertility Page - look for the link 'Fertility 101' on their home page or try this direct link http://tcrc.acor.org/fertility.html, and there's also a 'Fertility Articles and Links' page at http://tcrc.acor.org/fertility_links.html.
Testicular Cancer Information and Support (TC-Cancer.com) at www.tc-cancer.com has a page called 'Sex and Testicular Cancer' - look for a link to 'Sex With Testicular Cancer and Sperm Banking Options' on the home page or go to this direct link www.tc-cancer.com/tcsex.html. Also check out their very good Links page where you may find some links to other relevant websites. And they have forums where you can discuss fertility concerns with others if you wish. They don't have a forum specifically on fertility so simply choose whichever one looks closest to your needs or the most active one.
Other cancer types
You may find information on fertility issues on some of the websites I have listed for each cancer type on this website (www.bestcancersites.com). And there are forums and mailing lists not specifically about fertility where you can discuss any cancer-related matters including fertility issues, or search for discussions and posts on the subject. I won't list them all here - you can find them by browsing the webpages for each cancer type on this website. You may also find it worthwhile reading the information relating to fertility on the Breastcancer.org website (I've given links to it above) - some of it applies generally no matter what kind of cancer you are involved with.
Planet Cancer at www.planetcancer.com has a forum called 'Fertility Issues'. It was not particularly active when I visited on 23rd June 2008 but you may get some responses if you post onto that forum, or you could try posting into one of their more active forums. To find the forum go to their home page and click on the link 'Connect'and then follow the links, and when you get to the forum index page, scroll down the page to find the forum 'Fertility Issues'.
If your fertility concerns include questions about hysterectomy, Hystersisters.com at www.hystersisters.com has some forums on hysterectomy including one called ‘Cancer Concerns’. “Hyster Sisters is a women helping women website for hysterectomy support”. Look for a link to "Forums" on the home page. Their forums are very popular, with over 100,000 posts when I looked on 23rd June 2008.
General fertility websites (not specific to cancer)
Fertility is as we know a fundamental concern of humanity and there are numerous websites on or related to the topic. Time has not permitted me to do a detailed search, but here are a few good ones.
The USA's National Infertility Association RESOLVE at www.resolve.org "is a non-profit organization with the only established, nationwide [US] network of chapter mandated to promote reproductive health and to ensure equal access to all family building options for men and women experiencing infertility or other reproductive disorders, and to provide support services and physician referral and education" and "The mission of RESOLVE is to provide timely, compassionate support and information to people who are experiencing infertility and to increase awareness of infertility issues through public education and advocacy."
"RESOLVE has more than 50 local chapters available nationwide. Our volunteer run chapters offer many services to members, including local educational meetings, help lines, newsletters, support groups, and conferences".
They have very active forums on their website - find a link to 'Bulletin Board' on the home page. They also have scheduled chat sessions.
The website Fertility Neighborhood at www.fertilityneighborhood.com has many articles on fertility issues, about ten forums covering various aspects of fertility, and scheduled chat sessions. It's owned by a commercial enterprise but don't be put off by that. The website is well set out and I found the articles easy to read and understand. The forums are very active and well worth checking out if you wish to discuss fertility matters with others or look for discussions on particular topics. When I visited the site on 23rd June 2008 they reported "30,144 message board users have contributed 257,830 posts".There is a commercial company called Internet Health Resources which has created some good infertility websites. Here they are.
The Infertility Resources for Consumers website at www.ihr.com/infertility. They say "This Web site provides extensive information about IVF, ICSI, infertility clinics, donor egg and surrogacy services (e.g., surrogate mothers), tubal reversal doctors, vasectomy reversal doctors, natural infertility treatment, male infertility services, sperm banks, pharmacies, infertility books and videotapes, sperm testing, infertility support, and drugs and medications ...".
The InfertilityProfessionals.com website at www.infertilityprofessionals.com. "Welcome to InfertilityProfessionals.com. This Web site provides helpful information for reproductive and infertility professionals, including physicians, embryologists, nurses, donor egg services, surrogacy services, and clinic office managers."
The InfertilityBooks.com website at www.infertilitybooks.com. "This site contains over 320 infertility books, organized in helpful subject categories, for both consumers and professionals. Our goal is simple: to make it easy for you to find, evaluate, and/or purchase an infertility book."
IVF-infertility.com at www.ivf-infertility.com says "This website is designed by infertility specialists primarily for couples who are experiencing difficulty in having a child, and thinking that they might need medical help. We hope to guide you along the path of achieving a pregnancy, and take you step-by-step through the causes, investigations and treatment options of infertility, as well as assisted reproductive technologies (ART) such as IVF, their success rates and current legislation that govern them. In addition, it offers advice about counseling and lists helpful addresses related to infertility and its treatment, including a comprehensive listing of all licensed UK IVF clinics."
Their website has a wide range of information on matters relating to fertility and infertility, and a big message board with 8399 registered users and 226613 posts when I checked on 23rd June 2008. It's a website based in the United Kingdom and so also has a considerable amount of information specific to the U.K.
There's a very active message board with many individual forums on topics relating to IVF on this Australian website www.forum.ivf.org.au.
Surveys
I was asked on 23rd October 2007 if I would post a link to the following online survey on fertility and cancer, by members of the School of Psychology, Cardiff University. It seems like a good cause so I've put the link to the survey below (but please note that I don't endorse the survey or know anything about it beyond what I've read on their website).
They say "We invite you to take part in a survey on fertility and cancer. The purpose of the questionnaire is to learn about attitudes, opinions and needs with regard to fertility in people affected by cancer. Results will be posted on this website." The survey is at www.cardiff.ac.uk/psych/research/surveytracker/index.html.
New entry 2nd April 2008: Deirdre Page and Dr. Penelope Hasking at Monash University in Victoria Australia, are undertaking a study on infertility, the marital relationship and social support. They say "Very little research to date has been conducted into infertile couples as a unit, preferring to focus largely on the women’s perspective of infertility. ... The significance of learning more about how you as a couple cope during infertility and any subsequent treatment/s ... may have numerous benefits for couples experiencing infertility. Secondly, gaining an insight into how social support may lessen psychological distress such as feelings of anxiety and depression will allow us to better understand the experience of infertile couples and suggest strategies for increasing the wellbeing of such couples".
If you are a couple who may be interested in contributing to this study, you can find further details, and the questionnaires, online at http://coldfusion.its.monash.edu.au/med/spppm/questionnaires/dpage/.
More suggestions please
If you know of any other good websites large or small relating to the subject of fertility in relation to cancers and their treatment, or active forums (message or discussion boards) or mailing lists on the topic you would like to see added to this page, or errors or broken links on this webpage, please send me an email at
everest@bestcancersites.comEd Everest, Adelaide, Australia
I'm just starting this Australian section as at 29th September 2007 - here's the first two entries.
As mentioned above, there's a very active message board with many individual forums on topics relating to IVF on this Australian website www.forum.ivf.org.au.
There's an infertility support group in Western Australia called Genesis, with a webpage at www.users.bigpond.com/Genesissupport.htm - they meet once a month in East Victoria Park.
If you know of any other good Australian websites large or small relating to the subject of fertility in relation to cancers and their treatment, or active forums (message or discussion boards) or mailing lists on the topic you would like to see added to this Australian section, please send me an email at
Ed Everest, Adelaide, Australia
everest@bestcancersites.comPhoto credit two koalas
photo and copyright owner Jeremy Edwards
source www.istockphoto.com
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