posted on September 6, 2009 08:29:11 PM new
Thanks you all for your concern I'm very touched by being missed. I'm alive and will eventually be back to my old self, but never expected Lyme to last this long or what was to come.
As for feeling better, not much....I feel like crap from this disease, but am glad I don't have the joint pain, headaches and the 40 horrific other symptoms that many have. What I do have is extreme fatigue and tremors. I also have almost a complete loss of appetite, not related to Lyme, have lost 80 lbs and could well afford to lose them, but not the way it's happening. I am practically living on Ensure and orange juice. I can say I look much better because of the weight loss from 210 to 130 because I'm only 5'2"
I went to see an Endocrinologist about my loss of appetite and she ordered metabolic blood tests which came back pretty much normal except my vitamin D-3 was on the low side...told her I take 1000 IU per day and she said double it. Then she ordered an ultrasound of my thyroid which came back reporting the right side was enlarged and almost all tumor and suspicious for cancer and a few small nodules in the left. Next I was to have a biopsy with ultrasound to see just what the tumor was. Came back not cancer but a colloid nodular goiter which simply means my thyroid kept enlarging to compensate for it not producing enough thyroid hormone....will have an ultrasound ever six months to keep a watch on it.
The same day I had the biopsy a friend and I scheduled a mammogram, did the mammogram first then thyroid biopsy. Thyroid needle biopsy took five minutes, not much pain at all.
After the mammogram they told me they wanted to me to take a few more pictures then the doctor wanted to talk to me. She asked me if I would stay for both a needle and a core biopsy of my left breast with ultrasound and I did. Took longer than I expected, 25 minutes, and even though they deadened the area I found it somewhat painful, but bearable.
I was in the hall and waiting for my thyroid biopsy when she, Jennifer Sabol MD, not an oncologist but a breast surgeon who did the biopsy, asked if I would give her a few minutes so we went to her office and she showed me the mammogram pictures. I asked her outright if I had cancer of course expecting a no and she said yes. I wanted to know why she was so sure without the biopsy results and she said I've seen enough of these tumors to know and she was right...I have breast cancer.
When the biopsy report came back a few days later I went back to see her and she spent 2 hours with me explaining what I have and what she wants me to do.
What I have is a HER2-NEU (IDC) invasive ductive cancer 3/4"
She suggests a lumpectomy followed by 6 weeks of radiation 5 days a week probably followed by Herceptin, an Estrogen blocker. infusions which is not chemotherapy. My tumor is Estrogen & Progesteron recpetive. She feels I have a very small chance of having bone cancer..less than 2% and doesn't expect to find any in my lymph nodes but will check while I'm in the OR.
If I opt for a mastectomy there will be no radiation, but will have chemo.
My God what a choice...both something I don't want to go through, but have to and chose the lumpectomy.
She said she will have a plastic surgeon with her in the OR to repair my breast and if he does a lift he will also do the same on my right breast. Hoping for that, could use a lift.
I have an appointment with him 9/14 Wish it was a women...oh well.
I also have to have what is called Staging Studies which are an MRI, Xray, Bone Scan and 4 different blood tests.
I have been reading all I can about breast cancer at a really good web site breastcancer.org president and founder is Marisa Weiss MD. She practices at Lankaneu and Jefferson hospitals. I will have my surgery at Lankenau hospital in Wynnwood, PA
Dr Sabol's secretary called me Friday and said the doctor Dr Sabol would like me to choose for my Oncologist is Marisa Weiss, so I feel like I am in very good hands and delighted to have both for my doctors.
There is no one in my family with any kind of cancer so all this has been difficult to accept and along with the Lyme I don't know how I'm going to get through it.
My friend Roxanne was with me on both doctor visits and biopsies and said she will take me for my 30 radiation treatments and Herceptin infusions and even though it's not necessary I will be glad to have her with me.
I'm touched with everyone's concern and I know I should have posted sooner, but when you feel lousy all the time you fond yourself doing nothing.
Anyone here have breast cancer or know of someone who has or had it I would appreciate
anything I can learn.
From now on I will post and let you know what's happening every step of the way.
posted on September 6, 2009 08:41:36 PM new
Oh Jane - I am so sorry! It sounds like you have excellent medical care and that is something to be thankful for. I am praying for your speedy and complete recovery. Do keep us posted.
I am also very sorry to hear of your medical problems...it's almost too much to absorb at one time and you must feel totally overwhelmed by it all.
It sounds as though you have a very good friend in Roxanne. Between her and your friends here at Vendio and your own inner strength you will get through this.
Please know that although very few of us have met 'face-to-face' we are almost family!
posted on September 7, 2009 04:24:36 AM new
I'm so sorry to hear what you're going through McJane. Our thoughts are with you.
I just finished doing a research project for a writer on breast cancer stories and support that is available online.
There is so much information and support available online it's incredible. I read through some of these sites and found them so moving and inspirational. Hopefully you will find support and information there as well. Here are just a few of the blogs that I had been reading through that may help you, and of course there are tons of support sights available:
www.assertivepatient.com: The Assertive Cancer Patient - Living with Cancer and an attitude.
www.beyondthefight.blogspot.com: Writer was diagnosed with stage 2c breast cancer in 2006 at the age of 27. This space is often a vent, often a platform from which she shares my experiences with cancer and what is left after that.
www.birdsstillsing.blogspot.com/
This blog follows a breast cancer treatment. It was originally written only to a circle of friends/support people/family. It has honesty, humor, depth and inspiration to help you navigate through your own journey with this diagnosis.
We're thinking of you, and please keep up updated when you can.
~~~~~~~~~~~~~~~~~~ Caroline
posted on September 7, 2009 06:08:23 AM new
Sorry to hear about your illness.
I have a question on your thyroid test-I went thru some testing years ago and from what I recall,they took blood test looking for a certain hormone secreted by the pituary gland either T3 OR T4,which is meant to prompt the thyroid gland to produce more thyroxin.
See if they find that hormone (t3 or t4) in your blood,it means the master gland is not happy with the amount of thyroxin circulating in your body and wants the thyroid gland to work harder.(of course the master gland can be wrong,which is another story).
You said you lost weight,a lot of weight,if this is just a thryoid gland problem ,then it usually indicate an overactive thyroid not underactive,but then you also have cancer so this muddle the picture.
One cannot assume just because there are nodules formed around the thyroid gland,the gland is working overtime,a good endocrinologist should be looking for that hormone unless they have made changes on how to test the thyroid gland?
*
There is no 'Global savings glut',only wild horses and loose bankers.
posted on September 7, 2009 06:27:22 AM new
here is the website which explains the testings-
http://www.thyroid.org/patients/brochures/FunctionTests_brochure.pdf
*
There is no 'Global savings glut',only wild horses and loose bankers.
posted on September 7, 2009 07:25:40 AM new
I am so sorry to hear about your cancer Jane, you have enough to cope with from you Lyme disease. It must be very hard for you and your family.
As an RN I know that the 2 types of cancer that now have the greatest cure rate are prostate and breast cancer. I just pray that you will be able to be one of those that are cured.
How thankful you must be that you had your mammogram. I have been getting them for over 20 years, since they first started, and have had about 12 lumpectomies, and more biopsies than I can count. When I started nursing over 40 years ago, there was no way to know until the cancer was far advanced. We can be very thankful for modern medical advances and medications.
posted on September 7, 2009 07:30:35 AM new
I am so glad to hear from you but so sorry for all the troubles. It does sound like you have a very good and supportive friend and that will help very much. Also know we are all praying and hoping for a great outcome from your surgery and other tests. Congratulations on the weight loss but what a horrible way to have it happen. Take care of yourself and please drop in once in a while. Pat
posted on September 7, 2009 08:11:15 AM new
McJane, you have mail .
Hwahwa, thanks so much for the thyroid link. It makes the levels much easier to understand. Now I see why I stay so cold all the time.
Research is finding that many Americans are iodine deficient due to all the warnings against salt. Patients who present with mild thyroid problems may just be iodine deficient.
Also, many are Vit D deficient due to decreased sun exposure either from desk jobs, lack of outdoor exercise and/or the extensive use of sun-screen. My doctor says that a full 85% of the patients she tests are deficient.
posted on September 7, 2009 09:19:20 AM new
Jane,
Sorry to hear about your illness.
Please do keep us posted when you feel up to it.
You are in our prayers.
Diane
posted on September 7, 2009 09:25:10 AM new
I'm sorry to hear about this.
One thing I can suggest is having a family member or friend sit down with you and a notebook.
Write notes about everything important including insurance numbers, doctor info, appointments allergies, prescriptions, prescription schedules, etc... just about anything important.
We wish we have done this when my girlfriend was diagnosed with lymphoma and went through chemo. It really helps staying organized and helps others know the basics of your health care.
posted on September 7, 2009 09:47:46 AM new
actually very few people suffer from iodine deficiency.
These days we shop for food which is brought to us from all over the world or country-so if you live in midwest or high up in the hills,you can still get veggies and fruits and meat from the coast,the sea water seeps into the soil and there you have it,iodine in the soil and it is picked up in the grains fed to the animals and in the veggeis and food.
Sometimes there is disease which jeopardise the thyroid function or certian food blocks the production of thyroxin,like raw brocoli,raw cauliflower ,cooked bamboo shoot and for me,too many soybeans .
Some are born with an underactive thyroid,constant constipation is one sign.
*
There is no 'Global savings glut',only wild horses and loose bankers.
posted on September 7, 2009 05:23:46 PM new
I should have said 85 % are Vit D deficient.
I have to diasgree with you though Hwahwa about the iodine from food sources. While we do not need much idodine, people on low salt diets and people who eat a lot of fast foods are not getting their iodine needs met. In addition, over-farming of the crop lands and food stabilization before shipping is reducing the amount of natural minerals we obtain from food.
As for sea water in the soil, not very likely in the major growing regions of inland California, Texas and the midwest. Obtaining iodine from seafood or other marine sources? Americans are not eating enough seafood and if they do , they increase their exposure to mercury. It is a no win situation unless you are supplementing your diet with vitamins and minerals.
posted on September 7, 2009 05:56:48 PM new
Junk food is salty,so there is iodine in it,unless the maker is so cheap it uses salt without iodine.
As for people with low salt diet,there are low dosage synthroid pills he can take or he can add kelp or seaweed to his diet.
The amount of iodine we need daily is very small.
For some who live by the ocean,they may even get it in the air they breathe .
*
There is no 'Global savings glut',only wild horses and loose bankers.
posted on September 7, 2009 11:10:30 PM new
Shag great suggestion, very good idea...will do that so have already started while the dates are fresh in my mind.
Roxanne was with me on the second visit taking notes, and did get the important things...tumor type, size, etc, but the doctor told her she didn't have to write much of what she was saying. Couldn't have anyway we were there two hours. We are bringing a tape recorder next time.
hwahwa could be lack of iodine causing my thyroid problem. In the last year I haven't eaten very much...
No appetite at all and to think I used to feel so sorry for people who lost their sense of taste, not that that's good, but not wanting to eat anything is something else. Right now though I am craving orange juice.
Amber...nurse here too AD community college.
I take it your tumors were benign since you didn't mention radiation. Hope so.
I still can't come to terms with having cancer my mammogram/biopsy was 8/26 seems like forever. I will breathe easier after my bone scan.
neglus, I feel like I'm in excellent hands speciallt when I found out my oncologist is president and founder of breastcancer.com
otterop...Agree should have come right here where I knew I would find support, suggestions and understanding. Roxanne is an unbelievable friend. When I was in the hospital both times with Lyme she was there everyday. It means a lot when people care.
caroline...Wonderful sites you sent me to. Made me realize BC is a big deal, but curable, but when it happens to you, you keep saying why me and why can't just remove the lump and then just leave me alone. It's the cure that I hate to think about.
hwahwa T3 & T4 came back normal. My metabolic blood test which is different than the usual blood test is looking for problems in the endocrine system...they were very near normal. JUst wasn't making enough thyroid hormone so my thyroid enlarged to compensate....make more.
pmelcher aka Pat
Thanks for your kind words encouragement and prayers....I'll get through this, just wish the lyme Disease would let up a little more.
Might have to go back on doxycycline and dread it. When it kills the bacteria you get sick all over again, but a good thing bcause it means you are still infected and the abx is killing it. Called a Herxheimer reaction and it's miserable.
LtRay....are you Diana ???
Your right, bet almost everyone here is a little low on Vitamin D and if you buy some make sure it's D-3 not just plain D
I've been taking D-3 for close to two years 1000 IU a day plus what was in my multi vit and still was on the low side.
ebabe Will keep you posted..probably will drive you all crazy when I start bitc#@g
Thank you for your prayers.
neil...that's a good site, best I've seen on how to understand thyroid tests. I have copies of all my tests so that came in handy.
Pixia...I was so sure I saw a post from you, can't find it...
Fluffy thanks really mean that you woke me up and got me started....should have come here sooner.
Still have to always stop and take another look at your beautiful cat, but then to me all animals are beautiful, no exceptions.
BTW did you ever get anymore of those little RS five petal flowers/silver chain. I have pink, peridot, and clear. Love them and bought probably ten of them would like more to give as gifts to the techs in the dental office and now nurses. I'm sure you don't but thought I would ask anyway.
Everyone.....Feeling very good seeing your concerns, help and suggestions, also I'm ashamed for not posting sooner. You all have been wonderful. My first appointment is 9/14 pplastic surgeon of all things...will let you know just what he's going to do...wish he was a woman.
And to Glassgrl...LB...my good friend from way back when you were so kind to me and this was AW.
I'll be OK, please don't worry I really will.
Jane McLaughlin
302 Cheyney Road
Glen Mills, PA 19342
edited for spelling....twice.
[ edited by MCJANE on Sep 7, 2009 11:16 PM ]
[ edited by MCJANE on Sep 7, 2009 11:18 PM ]
posted on September 8, 2009 10:46:28 AM new
McJane, I have not posted much lately (or even visited) because we are getting ready to move and it is taking all my time. I was upset to read your current post. Lyme Disease is bad enough but I know this is even more worrisome. It seems that you have excellent support and a terrific medical team. I will be thinking about you and sending the very most positive vibes I can muster.
-----o----o----o----o----o----o----o----o
“The illiterate of the future will be the person ignorant of the use of the camera as well as of the pen.”
Maholy-Nagy, Vision in Motion, 1947
posted on September 8, 2009 11:48:39 PM new
Thanks photo
Lyme is bad because it's hard to diagnose and doctors very often don't prescribe the right treatment mistaking it for something else.
When that happens your in big trouble. With Lyme you need to stay on Doxycycline for at least six weeks...at least that's what the LLMD (lyme literate medical doctor) say.
And I'm talking about 1st stage, if you get to second or third stage you're very sick.
I was in late 1st stage and still am not completely over it, but doing OK.
At least with cancer they get right on it, several tests and surgery followed with more treatment. Then you pray it doesn't come back.
posted on September 9, 2009 03:18:56 AM new
Hi Jane
I'm really so sorry to hear about your illness and all you are going to be going through.
Please think Positive and forget any neg thoughts, so your mind will help your body to heal and be ready to accept all that you will be going through.
Now more then ever this is the time to be strong and determined to get through this in a positive way.
My entire Family will be praying for you, we know how important it is getting the mind ready to accept what you will be going through
and with all your friends here and family doing the same we know you will have all the strength you need.
posted on September 9, 2009 04:04:22 PM new
Hi Toni,
Your right have to be positive negative is out of the question and stress is the worst.
Got a call from my doctor's secretary today and they are really getting things moving.
I had my last dental implant done today at 11:00 and she called right after I got home and said my MRI is scheduled tomorrow9/10 and my bone scan (full body) is scheduled 9/11 so I'll be glad to bet both over with.
Will see my plastic surgeon 9/14
Also had four blood tests today and on the 22nd I see my oncologist.
I'm feeling very positive and glad to get things started.
Thank you for your families prayers and the support on VD...I know I'll be fine.
posted on September 9, 2009 07:55:25 PM new
Let us know how things go with the tests. I know everyone here cares about you and will be with you every step of your journey to recovery.
-----o----o----o----o----o----o----o----o
“The illiterate of the future will be the person ignorant of the use of the camera as well as of the pen.”
Maholy-Nagy, Vision in Motion, 1947
posted on September 9, 2009 08:59:24 PM new
Jane - I'm so sorry to hear of your news. I am a stage 2 cervical cancer survivor (20 years now) and I know the road you are going to travel will be tough. I had the radiation treatments. Make sure you have plenty of comfort food on hand because the radiation will make you ill. Not as ill as chemo, however. Also, make sure you get plenty of iron because radiation treatments can cause anemia. I think it's mainly because you don't want to eat from being sick. I had to have two transfusions because I wasn't taking care of myself and I didn't have a good support system at the time.
It sounds like you have a good support system. That's important. A sense of humor is also very important. I used to joke that I glowed in the dark. In fact, even 20 years later when someone says I'm glowing (meaning I look healthy), I laugh. I'm probably still radioactive.
It sounds like you have a good team of doctors. Be sure to ask plenty of questions, even if they seem stupid to ask.
My prayers are with you for your speedy recovery to perfect health. It's all about attitude, girl! Just know you can do it and you can survive it. I expect to hear from you in 20 years saying you, too, are a 20 year cancer survivor!
posted on September 15, 2009 07:11:15 PM new
photo just got my bone scan test from my doctor today...results...negative. Am I ever happy to hear that.
She also told me she has the results of my MRI and it's telling her the tumor is 3.7mm almost twice the size as what shows on the mammogram. She's puzzled about this. I have the disk, was given to me right after I had the MRI, she just has the report so I am meeting with her tomorrow and giving it to her and we will look at it together. I would love to put in my computer and take a look, but what if I destroyed it...wouldn't know what I'm looking at anyway !!!
Cheryl
It is so much better now than it was 20 years ago, even 10 years ago so it hurts to hear what you had to go through. I know it's not going to be smooth sailing the whole time, but I expect it to be as good as it can with all the advancements. I appreciate your sdvice and sharing your experience and will keep you updated and will be a 20 year survivor, like you, for sure. I have a good outlook I can see you do too and it's probably a main reason you are a survivor.
You cannot let yourself get stressed it's a killer if you do.
posted on September 16, 2009 08:37:24 PM new
The latest news:
Took the MRI disk to my doctor today after looking at it she said it's pretty sure the cancer has started to spread to my lymph nodes on the left side. It also shows the tumor is about twice the size on the MRI as it was on the mammogram from 1&3/4 mm
to 3.7 mm
She asked me to stay for a needle biopsy with ultrasound...which I did. Results may be in Friday, but most likely Monday.
posted on September 20, 2009 07:21:42 PM new
Jane, I wish I could send you some flowers to show that I am thinking of you. These are only cyber flowers but my wishes for the very best outcome tomorrow are very real.
Beverly
-----o----o----o----o----o----o----o----o
“The illiterate of the future will be the person ignorant of the use of the camera as well as of the pen.”
Maholy-Nagy, Vision in Motion, 1947
Caroline 
.
