Tag Archive for Cancer Support Community

Getting the 411 on Breast Reconstruction

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The Cancer Support Community surveyed 762 breast cancer survivors (who were eligible for breast reconstruction) and found that 43% of these women did not receive any info about breast reconstruction PRIOR to making surgical decisions (mastectomy or lumpectomy).  Why is this a huge problem?  Well, if you opt to reconstruct one or both boobs, the method you choose to reconstruct can be affected depending on how the initial surgery is done.  Since you can’t go back and re-do your mastectomy, this is an extremely important conversation to have with your doctor BEFORE a mastectomy takes place.

 

Whether you’ve been diagnosed with breast cancer or have a family history of breast cancer and/or the BRCA gene and are contemplating a mastectomy, check out BreastReconstruction.Org, the most comprehensive site on breast reconstruction that I’ve come across.

 

To provide a better understanding of the breast reconstruction process and the different options that exist, BreastReconstruction.Org has created a site that contains easy-to-understanddetailed information with illustrations and photographs on topics including: mastectomy; options for reconstruction; secondary procedures including nipple tattooing; pre and post operative care; as well as the latest news & information on reconstruction.  You can also read stories from other women who have walked in your shoes and learn from the decisions they have made.  It’s really a fantastic site.

 

BTW, my dear friend and kick-ass breast cancer survivor Diane Mapes (AKA @Double_Whammied) just wrote an incredible article on her breast reconstruction using the BRAVA/ fat transfer method.  To read about Diane’s experience, see her article “Reconstructing Hope.  Diane also blogs about breast cancer at www.doublewhammied.com.

 

 

 

 

The 411 on Cancer Support Groups

David Haas, fellow blogger & passionate cancer patient advocate approached me about guest blogging for CancerHAWK.  David writes for the Haas Blaag and he has also guested for other blogs includingBreast Cancer is my BITCH (which is where this post is from),  cut the b*tches off and others.  So without further ado, this is David Haas’ article Cancer Support Groups…. Thanks for sharing David!

 

“If you are a cancer patient or a cancer survivor, you may feel at times that no one understands what you are going through or what you have been through. Describing your experiences to someone who hasn’t had cancer can seem like describing snow to someone who has spent their life living in the rain forest. Indeed, your friends and relatives may just not be able to relate to your experiences.

 

This is why (I believe) it is important to get support and strength from other cancer survivors who understand what you are going through.  For example, if you have or had breast cancer, you may want advice and companionship from someone who has gone through breast cancer or is going through it currently. The same goes for if you have a rare disease such as mesothelioma, you may want to join a support group for cancer survivors who have gone through mesothelioma treatment. Not only will you be encouraged and find companionship, but you will also learn what you can expect and tricks to help cope with treatment from others who are farther along in their journey.

 

Some people find that writing about their experiences is particularly helpful. If this is true for you, then you may want to join an online support group. An online group is also good for people who may not be able to get out of their house to attend support group meetings in person. One such online group is called the Cancer Support Network and can be found at http://csn.cancer.org.

 

If you find that talking about your feelings is particularly helpful, you may want to join a support group locally. That way, you can gather together with other survivors in order to talk and work through your concerns and fears. You will also be able to share your victories and accomplishments. In addition, you may be able to find out about resources in your local area when you attend such a support group. This can be very helpful. In order to find a local group in your area, you may ask your oncologist or simply do a web search. Sometimes, groups post information in the newspaper about their meeting times.

 

Getting the support that you need is important. Whether you are a survivor, fighting cancer right now or in remission, you may want to join a group in order to connect with others who understand what you have gone through and are going through.”    By: David Haas, Haas Blaag

 

If you are interested in joining a support group (whether you are a patient, a caregiver or a survivor- there are support groups for everyone touched by cancer) but don’t know where to start finding one, check out these resources:

 

  • The Cancer Support Community is a GREAT resource to find support groups throughout the country.  Click HERE to find a support group that meets in your area.

 

  • Also check with your doctor’s office, infusion clinic or a nearby hospital… they usually have support groups or at a minimum, know of where a good one is.

 

 

  • There are several organizations who can “match” you with someone with your same diagnosis or most closely matches your situation, including Imerman’s Angels & Cancer Hope Network, to name a few.  Click HERE for more information. 

 

BTW,  all of the support groups that I know about are absolutely FREE of charge… there is no cost to participate.

 

Paying for New Boobs

In June, I wrote a post called Shopping for New Boobs which talks about a great FREE resource that The Cancer Support Community created to help educate woman on breast reconstruction.  You see, The Cancer Support Community surveyed 762 breast cancer survivors and found out that 43% of these women did NOT receive any information about reconstruction PRIOR to their mastectomy.  Here’s the problem with that…. if you decide to reconstruct one or both boobs, the method you choose to reconstruct absolutely affects how the mastectomy should be done.  (To download your free copy of Frankly Speaking About Cancer:  Breast Reconstruction, click HERE.)  

 

Now what happens if you want new boobs after having cancer but don’t have insurance and you can’t afford to pay for reconstruction?????

 

Check out this amazing organization… My Hope Chest… they provide FREE breast reconstruction to uninsured woman who have lost one or both breasts to cancer.  To qualify, patients must be 69 years of age or under; be free of medical complications that would preclude safe reconstructive surgery; be able to demonstrate financial need; and be a legal resident or citizen of the US.  For more information, on eligibility reqs, click HERE.

BTW, I saw this on my very good friend’s FB and this is what she has to say about breast cancer…  I LOVE it and want to share it with you….

The normal boobs ( . )( . ), the silicone boobs ( + )( + ), the perfect boobs (o)(o). Some boobs are cold (^)(^), and some boobs belong to grandmothers \./\./ And let’s not forget the very large boobs (o Y o), and very small boobs (.)(.), and lastly the asymmetrical boobs (•)(.). We love them all. Post this message on your wall and say ┌П┐(◉_◉)┌П┐ to breast cancer.

 

Sexual Healing MD Anderson Style

 

I am guest blogging for one of my favorite “go to” places when someone is diagnosed with cancer, The Cancer Support Community. Today I wrote a post for them called “Keepin’ the Love Alive… Sex & Cancer.”  Even though the need for intimacy and sex are not life and death issues, they are REAL quality of life issues for anyone, including cancer patients and their partners.  And talking about these issues with your partner and even your doctors can be very awkward.

 

I write about some helpful resources that can help a couple navigate their way through this part of the journey.  Click HERE to read my post on the Cancer Support Community’s site.

 

And this is a funny coincidence… because this morning, I received MD Anderson’s monthly newsletter Cancerwise.  One of their feature stories is “Sexual Healing, MD Anderson Style”.  There’s some great info here so I’m re-posting their article verbatim here at CancerHawk. So without further ado….

 

Sexual Healing, MD Anderson Style

 

“Some of you may be fans of the cable television series, “The Big C”. In its second season, it tells the story of Cathy Jamison, a woman in her 40s who’s diagnosed with stage IV melanoma. Cancer turns her from a staid, conventional woman into a free spirit, getting the most from each day, even though she’s often sad and afraid. In a recent episode titled “Sexual Healing,” the show explored the relationship between Cathy and her husband, Paul. She’s about to enter a clinical trial and is feeling exhausted. Paul keeps busy giving her shots and preparing healthy, but inedible food. Meanwhile, their sex life is headed out the window.

Paul tells Cathy that he doesn’t miss sex, but the next day catches him masturbating while looking at a lingerie catalog. The truth comes out — Paul is feeling very sexually frustrated.  Cathy’s solution is to make up a sexual fantasy for Paul, only to turn herself on. They end up having a great mutual encounter. The storyline does a good job of showing how partners can slip into a nurse/patient relationship that makes it very difficult to feel like lovers.
Another realistic theme is the extra effort it takes, both in terms of making time and sometimes trying something new together, to find intimacy in the midst of feeling tired, scared and sick. Finding the feeling.  For many years, my colleagues and I at MD Anderson have urged people going through cancer treatment to continue to make time for intimacy. Sometimes, that may mean exchanging back rubs or cuddling on the couch, or just taking a walk while holding hands.
Sexual problems caused by cancer treatment can easily turn lovemaking into work. A man feels anxious and ashamed that he can’t get or keep a firm erection. A woman is surprised when her usual sexual routine leaves her vagina dry, so that having intercourse is painful rather than pleasant.
We can often improve those sexual problems with a pill, shot or the right combination of vaginal moisturizers and lubricants. However, too few of the men and women we treat for cancer get the information that could help them stay sexually active, rather than giving up.
Why does intimacy matter now? Why is it important to keep your sex life going during and after cancer treatment? Sexual pleasure reminds us that we’re alive and vital. It also helps a couple feel emotionally close at a time when illness can divide them. There’s also growing evidence that our sexual organs stay healthier if they get some exercise.

 

When men have radical surgery for prostate cancer, they’re more likely to recover firm erections if they use a medical treatment to get an erection every few days. The tissue inside the penis needs fresh oxygen so that the tiny blood vessels can stay healthy and the spongy tissue in the shaft can keep its ability to stretch as blood fills it during erection. Men who aren’t sexually active after surgery may be more likely to notice a loss of penis size. We don’t know if a similar process happens in women, but it would not be surprising.

When women get sexually excited, the vagina gets as much as one-third deeper, and the cells lining it produce the clear fluid that makes sex comfortable. These processes, like an erection, are triggered as blood rushes into the genital area. So, don’t forget your sexual healing as you recover from your cancer treatment. Rather than worrying about erections or orgasms, set the goal of having good feelings in your body and giving pleasure to your partner.”

For more information, check out MD Anderson’s Sex and the Female Cancer Patient and Sex and the Male Cancer Patient.  Two more places to find great information about keepin’ the love alive… in spite of cancer.

Coping with the Cost of Cancer

 

I had no idea how expensive having cancer could be, that is until I lived it… co-pays, RXs, supplements, OTC meds, special foods, private nursing assistance, testing that insurance didn’t cover (even though we had excellent insurance coverage), parking fees at doctor’s offices, the list of expenses goes on & on… plus like many people, Alan was unable to work during his treatments.

 

I read a post in Wall Street Journal’s Health blog how out-of-pocket cost for some cancer patients exceed $700 a month.  Another study estimates that 30% of cancer patients (with insurance) go into financial debt because of cancer. Others don’t fill their prescriptions or get treatments because they simply can’t afford it.

 

Here are some AMAZING organizations that are advising patients on what resources are available to ease the financial burden that cancer can cause.

 

I really LOVE the Cancer Support Community‘s FREE booklet Coping with the Cost of Cancer from their Frankly Speaking About Cancer series.  It contains tons of great information on navigating the cost of care like identifying potential costs associated with care; listing questions to ask your health care team that will help estimate costs & figure out where you might need help (before you actually need it… hopefully); finding financial assistance programs; and much more.

 

Also check out the Cancer Financial Assistance Coalition (CFAC) is a group of national organizations helping educate patients & providers about existing resources through a searchable database of financial resources.

Another AMAZING resource to help navigate the financial side of chemo is Chemo101. Check out their financial & insurance section, where patients & caregivers can find information on sources of financial assistance, insurance-related questions, & other resources.  They also maintain a list of Patient Assistance Programs (PAPs), which are programs run by pharmaceutical companies that provide FREE medications to people who can not afford to buy their meds.  What a GREAT resource!

 

Wish I had known about these amazing FREE resources at the beginning of our cancer journey, instead of having to learn everything on our own.  Sue would have devoured this sort of information.

 

Check out the Cancer Support Community, Cancer Financial Assistance Coalition & Chemo101…. And please post any information you may have on these & other resources that help to manage the cost of cancer care… Knowledge is power… Share the power PLEASE!

Shopping for New Boobs… Breast Reconstruction

Alright… I have to admit, the idea of getting a new pair of perky boobs is very appealing to me.  Let’s just say that after giving birth to & nursing 3 kids, the “girls” just aren’t the same.  However, opting to get a new pair of boobs is very different than needing to get a new pair.  Having breast cancer & needing a mastectomy is no laughing matter.

 

The Cancer Support Community is an amazing natl nonprofit organization dedicated to providing FREE emotional support, education & hope for people with cancer & their loved ones.  I just LOVE this organization & wish I had known about them during my cancer journey with Alan.  I especially LOVE their “Frankly Speaking About Cancer” series of books & workshops…. tons of amazing, important, helpful, FREE information.

 

The Cancer Support Community recently surveyed 762 breast cancer survivors (who were eligible for breast reconstruction) and found that 43% of these women did not receive any info about breast reconstruction PRIOR to making surgical decisions (mastectomy or lumpectomy).  Now you may decide not to reconstruct and that is of course totally fine.  But if you opt to reconstruct one or both boobs, the method you choose to reconstruct absolutely affects how the initial surgery is done.  This is an extremely important conversation to have with your doctor BEFORE a mastectomy takes place.

 

I had no idea there were different ways to do breast reconstruction…with implants, without implants, immediate reconstruction, delayed reconstruction, with tissue flaps, etc. etc. etc.  Did you????

 

The Cancer Support Community has put together an amazing resource on breast reconstruction and questions to ask your surgeon about breast reconstruction BEFORE you have any surgery.  Click here to either to download a FREE copy electronically or to order your FREE hard copy of Frankly Speaking About Cancer:  Breast Reconstruction.

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