Thursday, August 25, 2011

Resources for Cancer Patients

I spent hundreds of hours looking for resources that had valuable and reliable information. There is a lot of opinion 'out there' so make sure, especially when reading information online, that the information is from a reputable source. I found the following resources to be helpful especially when I was trying to understand this disease and my options, but remember don't make any decisions without consulting a doctor or your cancer team. I was looking for a list like this when I was first diagnosed and I couldn't find one so why not try to make one with resources that I've used? - If you are reading this blog, you have obviously discovered this website however, this website is different than any other website I have discovered because it focuses on the individual. It recognizes that each person's diagnosis is different but that we all share similar experiences and difficulties. This is the only site that I have found that talks openly about issues like vaginal dryness, sex after cancer (or in my case, during chemo), and at the same time has threads on the forum like Music Monday and eating properly, etc. This website focuses on the person not only the cancer and I think that's one of the hardest types of resources to find. It allows people to discuss openly and honestly about however cancer has affected them.
This is an essential website for young women facing breast cancer. It wasn't until I found this website that I realized that not only was I not alone, but that there are so many other young women like me facing breast cancer. This is from their website, 'Launched in 2001, Rethink is the first-ever, Canadian breast cancer charity to bring bold, relevant awareness to the under-40 crowd; foster a new generation of young and influential breast cancer supporters; infuse sass and style into the cause; and, most importantly, respond to the unique needs of young (or youngish) women going through it.' Love it! (American) (Canadian)
These are websites that support young people dealing with cancer. This was challenging to find; I could find a lot of information on breast cancer but I couldn't find a lot about young women with breast cancer. Women diagnosed with breast cancer under 40 are not represented in much of the literature or research that I could find. Even the pamphlets, etc. that I can find at the hospital, all have pictures of women over 50. It makes it difficult to relate...
This is a great forum for anyone facing cancer (either as the patient, caregiver, spouse, etc.). You can ask any cancer related questions and this website is set up to have the most qualified member of the website answer that question. From their website, 'We are a welcoming and caring community that has come together to meet, share, and learn with each other. We welcome patients, families, caregivers, survivors, professionals, and organizations. All members are encouraged to share their unique knowledge and experiences. The more we share, the more people we help.' (Canadian Breast Cancer Foundation)
For everything breast cancer. They have a lot of specifics about symptoms, side effects, treatment, day to day issues, etc.
This is the Canadian Cancer Society's website and it answered a lot of questions early on. There is a lot of general information about all different sorts of cancer. This website was useful for some of the things my medical team didn't tell me like, to get a pap-test and a dental check-up prior to starting chemo. Your vaginal cells can change while in chemo and it's good to get a baseline just in case and if they find a cavity in a tooth after chemo starts they can't work on it due to possible infection. These were simple things that I didn't know prior to being diagnosed with cancer.

Your PDN - Your Private Duty Nurse is there for you. After treatment #2, I was pretty sick but I thought that vomiting, not sleeping, and constant nausea for 48 hours was just part of chemo. I waited 2 days before I called my PDN and I should have called after 2 hours at the most. Within 4 hours, I was hooked up to an IV at home to hydrate me as well as give me anti-nausea meds intravenously too. Your medical team is there to help you get through chemo with the least amount of discomfort as possible so use them.

Your Pharmacist- I have called my pharmacist on a number of occasions to ensure that certain medications can be taken with others or to verify that certain meds cause certain side effects. Don't be afraid to call a pharmacist to ask questions about your medication if you feel uncomfortable calling your PDN or oncologist.
Whenever you have any questions about your prescriptions you should always advise your PDN, pharmacist or doctor. However, I found these websites helpful when I was looking up quick facts about new prescriptions and their side effects, doses, etc., I used it as a verification tool.
Each cancer is treated with different chemo cocktails. If I'm not mistaken, the patient's cocktail is determined by the type of cancer (so in my case, breast) and then also the make-up of the tumour or cells. I had a cocktail called 'FEC' for treatments 1-3 and 'Taxotere' for treatment 4-6. I found that this website answered some questions about each of these treatments. So much of my fear prior to starting chemo was the unknown and this website was able to answer some of those 'unknowns'. I found that when my oncologist asked if I had any questions, my mind would be overwhelmed with new information so I didn't have any questions at the time and then once I got home, I couldn't get enough information about it. A lot of the different chemo treatments are listed on the left side of this website's page so if you aren't getting FEC or Taxotere, it doesn't mean that your treatment isn't on this website.
I need an injection once every treatment that costs $3000 each. Keith's plan covers 80% but that leaves $600 out-of-pocket. The Victory Program covered the outstanding cost of $600 so the $3000 injection that was going to put us into debt ended up costing us $28 each. It's an incredible program. Ask your oncologist about this program if you require this injection (there are a few different injections that this program covers but mine is called Neulasta). It's used to increase your white blood cell count during the days when you are highly susceptible to infection. Direct phone number is 1-888-706-4717.

* Don't be afraid to call your insurance company too. They cover things like wigs, mastectomy bras, and other 'stuff' you may not expect. A phone call never hurts.

PICC/Port/IV- Be aware of your options. From what I know, most chemotherapy is administered intravenously and depending on the the number of treatments you need, along with the limited access to veins that one has, one of the three options are chosen. In my case, I am petrified of needles so although the insertion of a PICC line caused many sleepless nights and too many tears, I chose it because it didn't add the anxiety to every chemo treatment, instead it was all over with one procedure (and I would do it again). Also, because I had lymph nodes removed from my right arm so, I will never be able to have an IV put in my right arm ever again (that is the 'limited access' I was referring to above). The PICC line is inserted into your arm using an ultrasound machine and guided up your arm through a vein into a larger vein that leads to your heart. My PICC line is 53cms long. It's not pleasant to think about but I can't feel it. A PICC also requires a lot of care; homecare comes to my house twice a week to change dressings and sanitize the area on my arm. For the record, there is no where that says you can't get an IV every time you get chemo, it just wasn't the right option for me.
I don't know a lot about the port but from my understanding, you get the port (it's inserted under your skin in your chest and is a minor surgery) when you are going to be in chemo long term. For example, during my first treatment, I met a woman who had been there every three weeks for a year and a half and she had a port. I think when you are HER2 positive they recommend a port rather than a PICC. Keith and I had lots of questions about chemo's effects on fertility and I found the following sites helped answer some of these questions. We were lucky enough to get referred to a fertility doctor prior to the start of chemo and although we learned about some options, if you are of reproductive age, be aware that there are many unknowns when it comes to chemo's effects on fertility so ask questions. For example, In Vitro was an option but because it requires hormone injections to over stimulate your ovaries in order to extract eggs and my cancer is hormone based, there wasn't enough research (to satisfy or convince us) that it would have no affect on recurrence. We didn't feel like there was definitive proof that it had absolutely no chance of increasing my odds of recurrence. There's no point in planning for a baby if I'm not here to have it. That's not to say that there aren't studies on women with breast cancer who have chosed IVF but there wasn't enough research for Keith and I to agree to go ahead with it. Our thought process was, at least we know the outcome (although it could mean that we can't have children) if we don't pump me full of hormones but there are so many variables and uncertainties with hormones and cancer if we were to use hormones.

Mastectomy Shop
- I went to a local, independent store where the owner was incredible. She was very knowledgeable and helpful. She helped me pick out the appropriate post-surgery bra. I know it may be a little intimidating to walk into a mastectomy specific store because every one knows why you are going in there (assumingly it's the same feeling as walking into an 'adult only store' - not that I would know) but it's so worth it. I went to 3 or 4 stores prior to feeling comfortable with the stock and the salesperson. So much of cancer is out of our hands and uncomfortable so when you have some say in the matter, make it count by shopping around first. I loved the bra I ended up getting.

Hospital Wig Shops - I was lucky enough to have benefits that covered my $655 wig but many people don't have that option. Some hospitals have used wig shops that sell wigs at a reduced price or supply them free of charge. These wigs have been donated after being lightly used then cleaned and sterilised. I know there is one at the hospital where I get my chemo and the hospital in Toronto where I did the lgfb workshop apparently also has something along the same lines. I can't seem to find a website to post but don't be afraid to ask someone in the hospital or cancer centre.

Support Groups- Support groups are usually specific to some sort of classification like type of cancer, or age, or are for caregivers of the patient, etc. I know there is one at my hospital that is specific to 18-35 year olds who have been diagnosed with cancer. I am hoping that I will be able to join in the fall because by the time I found out about the summer group, it had started three weeks prior. Regardless, I have yet to hear of anyone going to a support group and not feeling like it was worth it. I think there is a sense of comradery, validation, and some what relief that you are not alone. Although, I can't recommend them from experience, I do recommend them based on what others have told me.

A Mentor- My sister-in-law's mother was completing her radiation around the time I was having my surgery. She was diagnosed last year, had surgery, chemo and radiation and I really leaned on her for the 'is this normal" questions and the 'on what day of treatment did this happen" kind of concerns. She really put me at ease and validated my fears and concerns. If anyone out there has any concerns, or questions and you don't have anyone to ask these questions to, please don't hesitate to contact me. I am not at all qualified to be a mentor but sometimes you just want to know on what day someone else's hair fell out or how long thrush lasts while you are taking Taxotere. I am no doctor but I certainly don't mind answering questions about my experiences.

An Extra Set of Ears - I'm not going to lie, I have unintentionally completely quit listening to doctors in the middle of appointments because I get stuck on certain pieces of information or because I get overwhelmed with new side effects or when 'the plan' changes (for example when a lumpectomy turns into a mastectomy in the matter of minutes) so either bring your spouse, mother, daughter, friend, etc. and/or bring a pad of paper and a pen and write down as much as you can (especially if you are planning to repeat this information to family and friends at some point). I have been lucky enough to have my mom, Keith or a friend with me every time and they always pick up on something that I didn't even realize the doctor had said.

Physiotherapy - Your doctor will probably refer you to a physiotherapist but if not ask about going to one, especially if you've had any lymph nodes removed. They will tell you and teach you techniques and exercises that your surgeon may not that will increase your mobility. - I was able to apply for EI from the comfort of my own home and just had to send away some of the forms via snail mail but it sure did beat waiting in line at an office. I didn't find the process all that difficult either. The website is pretty informative and remember that you can't apply prior to your last day of work.

Health Services- Your doctor is aware of many resources for your well being so don't be afraid to ask. You have access to (although some of these will not be covered by OHIP) psychiatrists, nutritionists, social workers, psychologists, occupational therapists, etc. and if you feel like you could benefit from any of these, don't be afraid to ask your doctor about them. Your recovery is not only physical, it's mental too.
Victoria Ann Morrison was a wife, mother, grandmother, and the best friend of Deborah Rogers, the founder of Victoria's Quilts in the U.S. She was also a cancer patient. One of the comments she made about her chemotherapy was that she got cold while she was laying in the treatment facility waiting for the day's infusion to be over. Deborah remembered Victoria’s comment about being cold and wanted to do something. Since Victoria made so many quilts in her life time, Deb thought that this would be a good place to start. You can request a quilt for someone who has been diagnosed with cancer and within a few weeks, the quilt will be delivered to the patient's home. My mom got one for me and it is beautiful. This is an incredible organization that is completely free of charge. It is currently in Canada and the U.S.. -Look Good Feel Better - A 2 hour workshop that is supportive, informative, and full of easy and inspiring strategies for managing the appearance-related effects of cancer and its treatment. Participants feel empowered and ready to reclaim their sense of self and well-being. They also learn that they are not alone on their cancer journey. As I have said, it was the first time I had eyebrows in months thanks to the easy-to-follow tips on how to draw them on. My brother could have sworn that I grew them overnight, that's how natural they looked.
Cottage Dreams Cancer Recovery Initiative is a registered charity that offers recent cancer survivors the opportunity to spend a week at a private, donated cottage to reconnect and rejuvenate with family and friends after successfully completing treatment. Cool, eh?
I have found that this book really validates a lot of feelings that I have had thus far on my 'journey'. It is called "I Am Not My Breast Cancer" and it's a compilation of women's views, expressions, feelings, approaches, etc, to breast cancer. I have quoted it a few times in prior blog entries and I just can't recommend it enough. When I was first diagnosed, I bought a number of books but this one was that one book that I couldn't read a page without stopping and reading part of it to Keith.
Keep in mind, your cancer centre probably has a library full of books that can be used as a resource as well as your public library that way you don't have to go and buy them.

I found these websites very helpful but I don't advise you to make any decisions without consulting a healthcare professional based on the information found in these resources. They should be used as a guide but they should not be your only source for decision making. This entry was meant to be used as a database and as a way to educate yourself with what's out there. I found these websites to be applicable to me and I had to weed through a lot that wasn't. Hopefully this will save you a little time in an extremely time consuming venture known as the world wide web of cancer information.

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