An Urgent Alert
A few years ago, I blogged about my experience with vertigo, and the “miracle” cure I found in the Epley Maneuver. Several of you contacted me directly and expressed thanks after being freed from this previously “learn to live with it,” problem.
Today, I want to share with you a very urgent issue, unless you live in Connecticut or Texas, important information about your body is intentionally withheld from you. In my personal case, it unfortunately allowed cancer six months of free growth within my left breast. A recent biopsy showed it to be aggressive. Had I known then what I know now, I would have demanded determination at that time.
The issue is the tissue within your own breast it is not all the same as I had thought. Some women have fatty tissue others have dense tissue. Fatty tissue allows the mammogram to easily spot cancer. With dense breast tissue it is far more difficult and 45% of the time, cancer is not seen at all.
When the individual gets the written report from the radiologist, the tissue status is not included. The report the radiologist sends to the referring physician defines the tissue type. There are a couple of reasons that my research has found, first they do not want to alarm the woman, second is the cost of a more reliable screening such as ultra-sound or MRI. Both reasons indefensible in reality.
My surgery is scheduled for Tuesday, October 11th. Had I been aware, it could be seven months behind me with a lesser degree of cancer involved. My tissue is a part of me, and to think it is better to keep this information from me is beyond my ken. Insofar as the cost, well no savings there at all. Clearly it was more costly due to the delay in finding the tumor.
I personally feel the interpretive radiation department of a major cancer center greatly failed me. I am beyond disappointed. They were aware that my breast tissue needed better screening. I did have ultra-sound, but as there still was a suspicion, MRI would have better identified the cancer.
As it was, they asked me to return in six months rather than the normal year for the recheck. Unfortunately I foolishly went along with this. When I did return, they did the recheck with both the mammogram and ultra-sound and the advised me that I would need a biopsy.
I contacted a trusted friend who arranged a second opinion with a radiologist who designed a different form of ultra-sound called SonoCine. This was done on Monday September 19th. At that time, Dr. Kevin Kelly advised me that he found “invasive ductile cancer.” His suggestion rather than the needle biopsy scheduled was to ask for a referral to a breast surgeon. I did this and had that visit later that week. She ordered a double site core extraction as well as an MRI. These were done September 27th and 29th. On September 30th, 11 days after Dr. Kelly’s diagnosis I got the call that I did have cancer.
My reason for this alert is to ask you to express yourself to your primary care physician and ask to know what your breast tissue type actually is. Hearing dense, be aware that mammography is not enough. A 45% failure rate is very high, and a secondary type of screening is very necessary. In my case, traditional ultra-sound was not effective. For all my future follow up’s, and they will be at 6 month intervals for the next five years, they will only be SonoCine..I no longer trust my regular site.
Here are some links:
http://www.sonocine.com
http://www.densebreasttissue.net
http://www.areyoudense.org/pdf/densebreasttissue.pdf
Thank you for reading through this, now please share this with others and please let your congressional and state legislators know that you support notification.
Thank you,
Hugs,
Terrie
teresamasters
Latest posts by teresamasters (see all)
- An Urgent Alert - October 11, 2011
- Vertigo Revisited - April 15, 2011
- Hanuman and Ton, My Hero’s - March 12, 2011
{ 33 comments… read them below or add one }
Susan,
How wonderful to hear from you. this is my status as of today, 11/29/11. The radiation I received is called Brachytherapy, it is internal partial breast radiation. Rather than 5 days per week, once a day, for 6 consecutive weeks and whole breast radiation, I qualified for a newer procedure. It must be done within a 4 to 6 week post surgery period of time due to scar formation making it difficult and painful. It begins with surgical implantation under anesthesia of a device through which radiation passes directly into the cavity created by removal of the malignant tumor and surrounding clean margins. This requires 10 treatments, usually two a day, six hours apart. My total time because of the Veteran’s Day Holiday was 9 days, After the final treatment, the device is withdrawn, the incision is sealed and four weeks of no immersing. Back to the sitz bath washing.
The device called SAVI, now resides in aplastic bag in my purse. today I shared it with my opthamologist and a resident. They both knew of Brachytherapy, but have never seen the device. Amazed both of the, as it did my primary care physician as well.
The day after the SAVI came out, I began to feel better, and continue to do so. Now to find my stamina, balance and strength, as well as a good nights sleep and I will be on my way.
I so totally appreciate all the great messages I have received. Yes, I am now on a new bandwagon, down with cancer, more credit to new screening techniques, and share all the information possible. It is OK to challenge or question your physician, he/she does take off the white coal.
Hugs,
Terrie
Hello Terrie: I met you at Jay Whaley’s rolling mill workshop a couple of years ago, and was impressed by your warm friendliness. I’d fallen behind in reading the Orchid Digest, so I was very sorry to only recently read of your diagnosis and surgery. I hope by this point that you are well along on the road to recovery. Stay strong. You are in my thoughts.
Hugs to you (lots of them),
Susan
Jenn,
Thank you for your words, and I hope you do get an honest answer. Sad that one must live in Connecticut or Texas to get that answer routinely. I wish you the best, and hope you have negative results for your entire life. Believe me, I am too old for this.
Again, thank you for commenting.
Hugs,
Terrie
Dear Terrie,
Thank you so much for your selflessness and courage in sharing your difficult experience with us… our prayers and healing energy are all around you…
I’m due for a mammogram and will be sure to ask for my tissue type… thank you so much… I would have never known!
Hugs,
Jenn
Karen,
Thank you and believe it, I know you do and will, and I much appreciate that. My deepest gratitude to my Orchid Family.
Hugs and Thanks,
Terrie
Morning and a Half Later,
I’m up and sort of moving around, barely. How i would love to soak in my tub, but that is a no-no for at least until after my follow-up visit with my surgeon. Light shower after tomorrow, but I am not a shower person and all three bathrooms have showers in the tubs. Not sure I can climb over, and sure not going to ask the men in my household for help.
Good thing these deodorants.
Still not sleeping well, trying to think positive. I am seeing some of my sense of humor returning. Slowly.
I am so thankful for the kind messages I am receiving. Until the issue of fair notification where Dense Breast Tissue is concerned, I will not rest in publicizing
it far and wide. I hope the links I sent are shared as well.
Big Thanks and Hugs to All.
Terrie
Alma,
I so agree with you. Why women must fight for equal medical rights is beyond my comprehension. It is very lopsided IMHO. Probably would have had to go through it 6 months earlier as well, but for sure, the cancer may not have been invasive at that point and I may not have lost the lymph node as well.
I so thank you for your words, It is great to see a fellow long time Orchidian friend. I deeply value these friendships.
Hugs and Thanks,
Terrie
Dear Terrie,
Thank you for sharing this vital information. We will keep you in out thoughts, and support you continually.
Sending love and blessings on your healing journey,
Karen
Oh Franklin,
No wonder my head is swollen this morning. My oh my, flattery will get you everything. Still laughing over your comments. I am a bit more awake than I was during our phone call last night. You are the best, I’m so happy to have you in my life, and Don as well. What a wonderful combination. I am waiting for that home baked bread.
Hugs and Thanks,
Terrie
Barbara,
That is exactly how it should happen. Not all medical facilities are created equal, even when they are near the top. What a wonderful reference to San Jose Hospital in Monterrey. My Mexican roommate just got a notice of a 6 month mammogram follow-up because of something suspicious. She is older and not sophisticated but just saw what happened to me. I called her medical officer and asked them to provide her with her tissue type. They said they will call back, I sure hope so.
I am so happy to have read your post and really thank you.
Hugs,
Terrie
I was googling dense breast tissue in Spanish, did not have much success on the computer downstairs. Will do it from mine and print it out.
Gary,
What a sweet friend I have in you. Such wonderful words and wishes.
Thank You, and Hugs,
Terrie
Joan,
Thank goodness for your inner spokesperson. We do need to pay more attention to the little words within us. I know they may keep me out of trouble. I appreciate your sharing your personal experience. I trust that every follow-up has been clean.
Thanks and Hugs,
Terrie
Bobby,
What wonderful words. I so appreciate them. What is that song, “I’ll Get By With A Little help From My Fiends?” I do feel that is so true, I needed to share this experience so no one else needs to experience 6 months of waiting while cancer progressed. Now I have a week to wait for pathology reports.
Hugs and thanks,
Terrie
Lee,
Bless your wife, and by the way, you too. Thank you so much for sharing your personal information with me. It is welcome and reassuring.
Hugs,
Terrie
Judy,
Thanks, I was hesitant about sharing here on Orchid, but as I got angrier over the tissue deception, I decided to go for it. Amazing that such a strong issue could be swept under the carpet for so many years. What should be a number one priority for Women’s health, is a total betrayal. Anxiety and cost, are they kidding? Prove to me within my own case, where there is cost saving. Anxiety, well making me wait six months just to get a positive diagnosis, what aniety are they speaking of?
thanks for caring.
Hugs,
Terrie
Marilyn,
You are so correct. We were brought up to show respect for all, that is not to say we must accept that which is not comfortable. It is too easy in today’s world to double check, and it is our responsibility to do so.
Thank you for your kind words.
Hugs,
Terrie
Lona,
May you forever be benign. At least you will know. Good Luck,
Hugs, and Thanks,
Terrie
Susan,
Thank you very much. I miss your smiling face. I am sort of up and barely around, rather woozy. This morning one of my roommates showed me a letter the other one received. It essentially was the radiologist report with the “something suspicious” comment. I called her medical provider and asked for the tissue type. They will refer it to the nurse and call us back. Damn bureaucracy.
Thanks for your kind words, and Hugs,
Terrie
Terri, so sorry to hear about your situation. I will definitely keep you in my prayers and positive thoughts. Thanks, also for telling your story and giving this critical information to assist others. Sue Minnock
Terrie,
I have had much of the same tests you refer to including many mammograms, ultrasounds, biopsies and so far all seems to be o.k. I am due for a mammogram now and will schedule it asap.
Thank you for this vital information and I wish you all the best.
Lona
All the Best Terrie!! I have also found that you have to take your own health in control as I have had bad experiences listening to some doctors too. I have “fired” 4 doctors before finding one that could actually help me with a problem I had. Thank you for this inspiring blog.
Hey Terrie,
I just had a mammogram yesterday and will be sure to investigate the type of breast tissue when the results come back from the radiologist. My mom passes away in 1983 from breast cancer. You are in my thoughts and prayers. Thanks for sharing. –Jenny L
Oh Terrie,
I am so sad to hear your news and the story of inadequate notification. My prayers and thoughts are with you and I hope the surgery is completely successful.
Judy in Kansas
It can be brought to a stop (with a lot of luck). My wife has had two bouts with it and has been clear for almost 15 years after a mastectomy, lumpectomy, lymph node removal, etc.
She is 81, and I still can’t keep up with her.
Lee (the saw guy)
Dear Terrie, I have left this letter open as a reminder so that every time I see it I can say a prayer for you. Thank you for your courage and willingness to share to help others who may face the same thing.
Stay strong.
Bobbie
Terri, I, to was told to come back in 6 mos., but my gut feeling told me to seek another surgeon. I did and he told me he wishes more women would go with their gut feelings, because they are usually right. I had a moodified radical mastectomy within 2 months. God Bless you.
Terrie,
I’m so very sorry about all this with you. Let’s hope that the surgery will be effective.
You are way too dear a person to leave this vale of tears so prematurely! So don’t even consider it.
Fondly,
Gary
Terri – my prayers are with you. I had my last mammogram in Mexico at a private but non profit hospital. At the time of the mammogram, they found a mass (which turned out to be a cycst) but the important part is while I was still undressed from the mammogram, they rushed in and did a followup ultrasound right away.. A biopsy was done two hours later — how cool is that to be treated as someone whose health is important to the medical people?? Very cool is my answer! Viva Mexico! Viva San Jose Hospital in Monterrey! Love and best wishes for a complete recovery!
My Dearest Terrie,
To Know you is to know life itself, your energies inspire me to go that extra step in order to achieve, I have always looked to you for inspiration , and never have I walked away empty handed, for that I thank you, in your moment of need I send you now all the positive energy that I can muster up and mentally will be there with you ,holding your hand, as you go through your surgery.
As you are forever in my heart
Franklin Miranda Kerl
Dear Terrie, You are in my thoughts and prayers. There is no excuse for your doctors not giving you the vital information . I pray that all goes well for you now that you are finally getting treatment. It is terrible that due to your not being given full information at the very beginning that you now have to undergo cancer surgery. Bless you,
Alma
Terrie, I am praying for you.
Terrie,
I am sorry to hear of all your problems, they are tragic to say the least. Thank you, for thru all of your troubles, you would share this so others can be safe. I have my mammogram tomorrow & will ask for this info.
Thank you for caring for others.
peace,
Regina
Terrie,please know that my wife and I will keep you in our prayers.Thank you for sharing this information. It may well save someones life.We both are recovering from cancer surgery,so we know your concerns and appreciate them,God bless,John