Before You Donate
Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.
Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.
Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.
Finding Your Team
If you want to participate in your health care, and be an equal member of the team, indeed head of your team, you have to be involved in selecting the members.
The effort you put into actually admitting what is important to YOU, and selecting a team now, will serve you well if you ever need to have experts to take you through a new nightmare. It is well worth the effort just as important as early screening for breastcancer—PREVENTION.
The physicians and others you choose will be vitally important people and therefore must be highly respected and recommended by their own peers as well as other patients. They will be individuals you will always respect, and care for, too. I still pray for my team members every evening—each new day they are first in my mind and heart.
Once you are told that you need to have a biopsy it is not too late but it would be far easier if you would have begun searching for a team of physicians, advocates, and helpers ahead of time. Don't confine this to cancer, of course, but be darned certain you have a good crop of specialists somewhere.If you need one now find someone to help give you the greatest amount of accurate information, and appropriate treatment.
Breast cancer is treatable, today, but it has to be detected early to have the best outcome. Start by selecting a surgeon to look at your mammogram and determine the best type of biopsy. The surgeon may suggest that the radiologist (who read your mammogram) also a physician, go ahead and proceed with the biopsy, or perform it herself, but having these two physicians right up front, is an asset. Be sure, first of all, that the radiologist has WRITTEN a report on what was found on your mammogram, that the surgeon has this report, and you have a copy of it (a copy should also be in the hands of your family physician) AND, that you possess your original mammogram (FDA law provides that the patient owns the mammogram, not a copy, not the radiology group!). Also, ask them both to assure you that a Mammatome biopsy will not be the best direction to go to avoid displacement of cells, for one example.
Keep in mind: using an approach that is helpful to one person, may not be what you want for yourself. For example, bringing a cancer specialist into the picture, in your mind at this time, may be just too hard on you. If that's the case, that's all right. An excellent breast surgeon will understand. But, if you've already found an oncologist, you've solved a challenge ahead of time, and an excellent one will always respect your preventive approach to your healthcare. My own Next Step concept might help you. The next step may only be that which gives you the greatest potential for health and recovery, nothing else, nothing, not shopping, paying bills, working, nada!
Sometimes we just have to go one day at time—I still do. It helps me to believe I shall never give into this, but others have to help me, too!
Searching for a good team when you are well is a preventive step. If you must find one, in the beginning you'll have the energy to do this seeking in spite of being in shock, fearful, and concerned. As time goes by, if you have treatment, of any kind you will find yourself become more self-isolating, and much of this would be from exhaustion and hearing nothing but cancer for so long.
At almost five months into this, I longed for a solitary cabin on the Russian River or at least the Colorado. I just wanted to begin to lick my wounds, so to speak. We respect animals who do this . . . why not humans? My oncologist was very open about this need and the stress.
Finding each member of the team was a challenge for me. Originally, I just fell into the established process, went for the biopsy, saw a surgeon someone recommended, went for a second opinion, decided on that one so I could have a special node biopsy which the first surgeon told me was not being done in my city (he lied!), and on and on.
This ended is an unfortunate situation for me, and left me in terror, but I had to start all over again. This time, I undertook it with much more deliberation much to the pity of my poor new teammates!
Once you have the radiologist who is a breast specialist, surgeon, and perhaps a plastic surgeon, pathologists, oncologist, and any other physicians you want on your team you will feel much more in control of this crazy disease process. One caveat, they must agree to be a team!
Teammates will switch places of prominence in the course from diagnosis to treatment, maybe several times. Excellent team member will perform like musicians in a chamber orchestra, without conductors, but producing a remarkable blend of tones, and personalities. You'll admire your teammates, and respect them more everyday. This may not occur, and you or another physician, or your advocate may have to 'prime the pump,' so to speak. The team concept gives you a confidence in them, and defines your responsibilities as well.
Information is out in the open, and you will trust them and they will you. I would think it's important that a physician has confidence that her/his patients will speak openly with them. That limits the potential for misunderstandings, and a team will be more inclined to review your case and progress formally and informally, to enhance your care.
There was a time when one of my team members was ill and didn't want the world to know, but did confide it in me, and another professional, and we were able to help him by doing something he needed done to get through his illness. I now think how he must have felt to be able to know he could be open with those he knew would care and understand, and no pretenses of "professionalism" bogging him down when he was ill, to boot.
You're a team, and you'll learn from each other. I think mine have already discovered that I think they are the best after I'd received a comment about my surgeon (it was unethical of the speaker, and I nearly landed on the person on all fours, as weak as I was at the time, and duly reported him).
You'll find yourself "waving" to those you're leaving behind for a few days, to move back to one of the others, as needed, but you should always feel those teammates are there for you, ready to move in with their special expertise at any given moment and speak openly for and to the Team! You must be willing to do that, too, and you are best served if you trust them enough to perform for you if you are even unable to fully participate.
Formal Instructions to Physicians must be in each of their hands, and on file in your chart at the hospital. That's only being considerate of them and your loved ones (A Living Will). In fact, the person who has my Power of Attorney for medical decisions is also the one person I've told my physician that he can speak to about my case, if she phones. I do not want family members or friends calling my doctor (s) without my permission, or knowledge. I'm still competent, and if I'm not, I've made plans for that (part of preserving some control over this situation).
IF at any time, one of your physicians does not perform up to your reasonable expectations tell your primary doctor, and another, and replace that one. Physicians on teams do not become buddies, so don't expect that. In fact, few communicate well to begin with, those who do are exceptional. But, you can expect that the rest of your Team members will have referrals for you to consider. There is a bond between all of you, and that is acceptance, comfort, and understanding all around. They can relax with you—even when you're going "nutso" and they will help calm you. That's what they must learn: about you. For example, you can expect telephone calls to be returned in a reasonable length of time. If they are not, within a day, find another physician.
This is a learning experience, but one we could have all done without. Sometimes—I wonder.
rev 08/14/05