The Pink Link
This site isn’t medical advice – it doesn’t tell you what you should or should not do. It is just things I have learned and am still learning. Please pass on what you have learned too so we have a place that our classmates/friends can come and get information if they are dealing with something in their lives too. I am going to start this and you can e-mail me firstname.lastname@example.org and let me know what you have learned through your experience with any challenges. Also if you have any questions or want to just share. You can let me know what I can post and what you don’t want me to post. I have learned a lot through my experience with my son having a brain tumor and seizures. Then now with me experiencing breast cancer. These are just thing I have learned by researching the internet. We do have some doctors from our class that can also maybe let us know of things of important, so maybe they can let us know if something new is out there for us to look into. They might know of a trial studies going on somewhere in any area of medicine.
Things I have learned about breast cancer.
1. There are different kinds of breast cancer. They are also feed in different ways. All breast cancers are now routinely tested at the time of diagnosis to determine whether the tumor is receptor positive or negative for estrogen and or progesterone receptors (ER/PR receptor status). The test is done on the breast cancer biopsy or tumor specimen. If a breast cancer has measurable receptor sites present, then it is called estrogen- and or progesterone-positive, or simply hormone receptor-positive. If the breast cancer does not contain measurable receptor sites, then it is called estrogen/progesterone or hormone receptor-negative. Breast cancers that have not been tested for hormone receptors are referred to as unknown receptor status.
A. Positive – feed by estrogen and progesterone - Hormone therapy for breast cancer blocks hormones from being used by cancer cells to stimulate their growth. The hormones estrogen and progesterone circulate in the bloodstream. They can attach to breast cancer cells and stimulate tumor growth. Estrogen is the major promoter of cell growth in hormone dependent breast cancer. The goal of hormone therapy is to deprive the cancer tissue of estrogen, suiting in halting or slowing of cancer cell growth. Unlike chemotherapy, hormone therapy, also called endocrine (EN doe krin) therapy, does not kill the cancer cell. Hormone therapy acts by either blocking estrogen from reaching cancer cells (receptor blocker) or reducing the production of estrogen. The specific hormone treatment chosen depends on many factors including whether the tumor has the protein features, called receptors, needed to use these hormones to spur growth. Tumors that have these receptors are called receptor positive; those that do not have the receptors are receptor negative.
a. Drugs given for positive
i. Tamoxifen – this also has been shown to help with bone loss. Click on link below and it will give you others. If clicking doesn’t work just copy and paste in a web search.
ii. Go to this site and it will tell you other drugs.
B. Triple Negative breast cancer - This isn’t fed by estrogen or progesterone. They say that exercise and low fat diet may help with triple negative.
I think one thing I can’t stress enough is to keep in prayer. This really has been a very easy time for me because of the Lord holding me in his arms. Those that know me know this isn’t my natures so I know the peace that I have is because of our Father holding me so close. Another things I can’t stress enough is to research. Not only will it let you know what is out there but will let you know what question to ask. Here is an example of a few questions I ask ….
1. Will you do a Sentinel Lymph Node Biopsy? (sentinel lymph nodes are under your arm and are the first node to receive waste from the breast.
2. Do you think I should have radiation if I chose a lumpectomy? (there are different kinds of radiation … there is the Mammosite Breachytherapy – which is around 5 days and you go twice a day …. http://www.mammosite.com/breast-lumpectomy/advantages-mammosite.cfm
. Savi is just a different end but is the same system as Mammosite.
Then the traditional radiation treatment is around 5 to 6 weeks and around 30 to 35 sessions.
Mammosite Breachytherapy is also used in some Prostate cancers.
3. Will I take medicine after the surgery? If so, what do you think the difference is between Tamoxifen or Bisphosphoonates of Raloxifene?
4. Is the tumor estrogen fed?
5. Does a biopsy and messing with the cancer cause it to raise its ugly head and start spreading or growing faster?
6. When would be the soonest that I could have to surgery to remove the tumor?
7. How long after the surgery would it be before I start the radiation if that is what you think I should do next?
8. How long will it take to recoup after the surgery? Lumpectomy ____ Mastectomy ______
9. What should I expect after removal of the cancer?
10. What do I do after the surgery?
11. Is it a fast growing tumor?
Think of what you want to ask and write them down and take it with you. You might want to also take a tape recorder and ask them if they care if you tap what they say so you can go and listen to it again if you want to. I went in with my right breast. They wanted to do another Mammogram (which I had 6 months earlier) and an ultra sound. They saw something and wanted to check it out so they set me up for an MRI. It came back that the right side was OK but they saw something in my left breast. Now remember I didn’t go in for my left side. Then they wanted to do an ultra sound core needle biopsy. They did six on the left side and four on the right side. Now, if you are like me this sounded really scary … again the Lord was holding me very close … it really was a breeze … they only made a small cute and went through the same site for the six on the left side … then another small cute on the right side. They deadened it and I really didn’t feel a thing. It sounds like an electric stapler but it didn’t hurt. If someone is going to have to go through something like this and wants to talk to me just e-mail me and if you want I can call you back on the phone. It really helps at times to talk to someone who has gone through it.
I have also dealt with my precious son having a brain tumor and the Lord brought me the Cleveland Clinic in Cleveland, Ohio. We went to Dr. Gene Barnett and the Lord used him to perform a miracle.
Dr. Gene H. Barnett
9500 Euclid Avenue
Clevenalnd, Ohio 44195
Phone (216) 444-5381
Brain Tumor and Neuro_Oncology Center/Desk R20