About Joining a Private Breast Cancer Online Support Group

In Breast Cancer, Recent Posts by Barbara Jacoby

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As soon as you receive a diagnosis of breast cancer you are immediately joining a group known as Breast Cancer Survivors. More than likely you will also be asked whether you are interested in joining a local support group that is associated with your medical community, hospital, church or even your employer. On the surface, this may sound like a great idea and for many people it actually is. But here again, just like anything else, you will need to check out your options carefully.

“And if for some reason you do not find a group to join, you just might want to start one of your own. I promise you that the rewards in helping others in this way are immeasurable.Barbara Jacoby

I personally did not meet the person in charge of our hospital’s support group until I was coming out of anesthesia from my first surgery. It seems that her sole mission was to shove a pink pillow into my hands while I was trying to receive instructions on how to deal with the drain tube that had been inserted at the end of my surgery. She also found that an appropriate use of this time was to try to start a conversation with the nurses who were attending to me and to totally ignore my husband who was standing next to me. Of course, he could have used a little support himself.

Many people were dissuaded from returning to an in-person group because they found the other women in the group were only there to moan and groan and complain about how awful their lives were after their individual diagnosis and treatment. Now, if you were one of those who wanted to have some support and positive reinforcement and inspiration, you do not want to be part of such a gathering and more than likely will give up on the support group idea if this is your first experience.

However, now we have a whole new selection of PRIVATE groups that we can join online that are so very specific. I have already discovered groups that have been set up for metastatic breast cancer, for those with BRCA gene mutations, aromatase inhibitors side effects, specific treatment drugs, young breast cancer survivors, breast reconstruction and male survivors.  Many of these groups were set up because people did not want to meet others in person or have to travel to meetings or because outside groups were not dealing with the issues where people were seeking more information. And as medical doctors may have become less and less accessible to patients, more people were turning to their own peers for information and help.

Many of these groups are very proactive and supportive and helpful to all of the women who participate. Some are composed of those who have already recovered from their surgeries and treatments and now help those in need with all kinds of information which include questions and answer segments, video pieces that provide information from medical professionals and supportive information about other programs that may provide info and resources to those in their group. These groups are also extremely helpful for those who may not be able to attend in-person groups because they are being held when the participants are working or attending to families, etc. so that the support that one is seeking can be found when a person has the time within their own schedule.

However, we must remember that our own medical team is always the best place to ask for information first. As we know, each person’s cancer is as individual as our fingerprints and our medical professionals has all of our personal data. So if you are dealing with specific treatment issues, as an example, and experiencing problems on any level, you should turn to them first. However, if they are not providing you with the answers that you need, you may want to get a referral to a second or third or fourth medical professional in order to switch medications or determine whether there are other medical testing that is needed in order to determine what is the best way to treat you personally.

Whether you choose to join an online group or not is strictly a matter of preference. Some people are very private and prefer to not share with those that they don’t already know with regard to anything going on in their private medical life. However, as you do not need to interact, this may be the best way to find information in a peer group of others who have already had the same or similar issue(s) with which you are dealing in order to enhance your own doctor/patient conversations and help you decide whether you might need to find a different medical professional. The most important thing to know is that such help and such groups are available to you. And if for some reason you do not find a group to join, you just might want to start one of your own. I promise you that the rewards in helping others in this way are immeasurable.