Breast Cancer Info Sharing

After having been recently diagnosed with breast cancer, I am encouraged to open this thread by others who would like to share information with others who have joined our sisterhood.

There's so much to learn and so much to take in all at once. Lots of decisions to make, too.

Please feel free to share your experiences and hope that we may save lives in the process, and lift each other up.

It is a good time not to be outside in the dangerous weather. I felt fine tyesterday morning so we went to Sunday School and Church. The lady, Jo, who works with the Junior Quilters with me and I signed up for altar care for the month of December. She took care of the set-up on Saturday while we were at church with the little girls and I was all set to clean up.

Well, I felt fine until I finished emptying the trays of communion glasses (we still use the washable individual cups) into the sink when I suddenly felt like I had to
sit down. Quint went to warm up the car and moved it into the portico at church so I wouldn’t have to walk through the blowing snow. A couple of other ladies finished cleaning up the communion service since Jo had gone home in the middle of service with a bronchial infection to go back to bed.

At least I made it to church and received communion which I did not want to miss.

I just felt like a wet noodle, kind of like going across the mountains and some altitude thing going on which I’m not used to, being a flatlander, as Quint calls me. Of course, he’s lived in Illinois so long he’s no so used to elevation anymore either, like he used to be when he lived in Colorado.

Anyway, it was blustery blustery here. Lots of snow blowing around with gusty winds.

But it’s going to get back up into the 30s by Wednesday. All I have done today was go over to the oncology center and get a shot of something to help me boost my white blood cells. Other than that, not much else going on. I have an electric blanket that I snuggle into when I’m watching TV in my
Laz-Y-Boy rocker.

What a life! Hope all is well with everybody out there.

— Jane

Hi everybody:

I have officially been cleared for “phase one” of my reconstructive surgery which is this Thursday. I was a bit anemic according to my blood work and was asked to take iron supplements for a week to build up my red blood cells before surgery, but I am fine now.

For “phase one” of this surgery, my plastic surgeon is going to insert an “expandor “into my left chest area. There will be 2 drain tubes in there too (geeezz - again!) As the tubes drain, I have to keep track of the cc’s and call the surgeon’s nurse with the numbers. The drains will be removed in two weeks or so.

Then I begin a series of injections of saline into the expandor for 4 - 6 weeks. About a month or so after that the implant is put in (more drains, I think - yikes!)and we wait for a while.

Then the “healthy”, right breast will be “adjusted” to match the new one - this is down the road - maybe March or April.

My last chemo is Dec. 22nd (hooray!) I am doing fine and grateful to God for my life. After this first surgery and the chemo is done, I am planning to do lots of research to determine which vitamins and minerals I need to take to stay healthy. I definitely will start to take Fish Oil-Omega 3 pill supplements to combat the aches and pains I am experiencing from the Femara I have to take.

Finally, to all of you who are facing having cancer or who are starting chemo or in the middle of it, you have all my prayers for the months ahead. To all the spouses who are standing by their wives and helping them stay strong, you are a blessing to your wives. My husband has been wonderful through this long year. God bless him.

Signed,
“Saline Bunches”

Bunches:

Glad to hear from you and also glad to hear that you’re on the wind-down with the chemo.

And also that you’re going to start the reconstruction.

This chemotherapy business may just be my grand opportunity to trade my kitty cat for a new one. Looks like I used up all the nine lives of the first kitty. So I’m starting over with a cute little new one.

I went in to the oncology center last Monday for a shot of something that will boost my white blood cells. As the nurse was injecting me, she warned that after three days or so my bones would start to ache. Especially the long bones. So far I’ve not had any trouble with my long bones but I was awakened this morning by a throbbing ache across my hip saddle. That did not feel good. As I lay there in bed, I tried to isolate the discomfort. It wasn’t a pain. But the throbbing definitely felt like it was in the bone and only happened when my heart beat.

“Good grief, now I’m micromanaging my aches and pains,” I thought. So I got up and took an Extra Strength Tylenol. So far over-the-counter stuff is working very well. Immodium is wonderful for lower GI distress and Pepto Bismol chewable caplets worked wonders when I thought I might become nauseous.

Today is the last day I’m supposed to be down here on the bottom. I can start my upswing anytime now, thank you very much.

Actually if I had two huge big poles, I could hang a hammock and suspend myself between heaven and earth. I don’t feel good enough to be up and about or bad enough to be parked in bed. And truthfully, this is the first day since last Monday since I’ve even felt like doing any cyberlurking or web-posting.

That’s an improvement for which I’m very grateful.

Here’s the deal. Since the partial mastectomy leaves me basically free of any cancer cells, except for the possibility of disguised ones that may be marauding around and hiding in tissues, hoping not to be detected, the chemo will reduce the odds of recurrence from 33% to 22%. That’s 11 percentage points, or, roughly 3 points a chemo cycle. The oncologist may not agree with that math but it helps me endure.

Then, the radiation takes me from 22% down to 7% odds that there will be no recurrence of breast cancer. While I’m going through radiation, and for 5 years, I will be on an estrogen suppressant that will take the odds of recurrence down to almost 0! I’ll take those odds.

My next treatment is now scheduled for December 30. Happy New Year everybody! Two more after that.

And I agree with you, Bunches! Thank God for wonderful husbands.

— Jane Reinheimer

You sound like just what I’ve been going thru! My 1st Neulasta shot hit me thru the hips and tailbone, too! throbbed weirdly, as well.
This time around tho my blood work came back so good I didn’t need the shot this time, so the stuff must work pretty well. That darn tumor continues to shrink. Be gone, evil thing!
I’m at my half way point now. Next dose is Jan 6th. We get 2 rounds in Jan. this time.

I can relate to the feeling poorly at church. That’s how the timing is for me. I plan to be there tomorrow, but who knows what may happen. Hoping the pastor’s sermon will be short! LOL!

It sounds like you’re handling it well, jane. See, it ain’t so scarey, now is it? Altho, I will admit we’ll all be real germaphobes by the time it’s all over, going thru chemo this time of year-worst time ever to have you’re defenses down.

Hang in there, ladies! And if I don’t hear from y’all, or you don’t hear from me (cuz I’m heading into “down time” soon) Have a joyous, happy, and blessed Christmas!

Hey Jilly:

Don’t worry about Taxotere. I took it for 5 months with Carboplatin and Herceptin and I didn’t get nauseous and nails were ok, but I did get heartburn. Be careful what you eat if you get that reaction. Keep your foods bland, puddings, applesauce, mild soups, soft bread is ok, watch the spicy foods and heavy rich sauces. You will see your reactions to various foods as you eat them and gauge what you should avoid for a while. You will get sleepy after the chemo but that’s natural.

I’m completely done with chemo (!!) and now in the breast reconstruction. I’ve had 2 injections of saline into my “tissue expander” since the operation to install it on December 16th. For those entering that phase I would advise you to take your time - 50 cc’s of saline is enough to inject into the tissue expander for each time (you get an injection once a week) - 100 cc’s was too much for me.

Ibuprofen is all I needed for the smaller amount of saline to combat the pain and doc advised me to do the walk the wall with your fingers exercise that people do after their mastectomy. I hate that exercise and it hurts but you want to reduce the stress on your ribs and surrounding tissue as you expand.

I think of myself right now as a flat Micheline tire that is being slowly pumped up (”choo-choo-choo”!). Eventually in March or April I will get the operation to insert the permanent implant.

Then after some rest we start working on the right breast to match everything up.

As I said, I had the expander installed on Dec. 16th so
Christmas was mostly pain, antibiotics and pain killers. I found some of the happy happy Christmas sing-a-long shows depressing cause I wasn’t feeling too cheerful, so I revelled in the troubles of “The Real Housewives of Wherever” repeats. These are plastic surgery poster gals with their rich lifestyles and lots of time for shopping and lunch. But I lived vicariously through them - a pleasure kind of like eating an entire box of chocolates while watching a 1940’s romantic movie!

I spend quite a bit of time with my hubby who has been wonderful and I have all you special friends here and on Facebook.

Keep your spirits up everyone!
Bunches

Well, my story is a little upsetting. I’m unemployed for 3 years and have no health insurance. I found a lump in my left breast the beginning of August. I called all the “Foundations” for help in getting a low cost or free mammogram. As soon as they heard “lump” no one would help me. That’s right NONE of these so-called cancer organizations would assist me.

Another reason I was rejected, besides the lump was that my unemployment “income” was too high....(not enough to live on, but too high to qualify for government programs!)

Finally I was directed to a surgeon in December who took me on and was willing to do a biopsy through funding. I had a biopsy and ultrasound. Originally he thought it was a benign tumor. On December 15, 2010, the biopsy came back, and it was breast cancer with a mastectomy indicated. I just stared at him, speechless. I don’t know how I got home that day. I couldn’t even squeak out the words ‘cancer’ to anyone. I didn’t eat for 4 days and had the ‘runs’ for 3 days. My first question was “Am I gonna die?” Probably many people have that same reaction.

I went for all the pre-op tests, but since I’m diabetic, my blood sugar was very high. They wouldn’t give me medical clearance until I got my blood sugar down. I’ve been working to get it down, and have been successful so far. Luckily, my PET scan came back clear!

My surgery is set for February 10, 2011...yes, I’m scared, but more upset over the impending sickness I will experience with the chem and radiation. Naturally, there is a part of me who’s vanity doesn’t like the idea of losing my hair, but hey, it’s life or death.

I’m very depressed over this, but I have a lot of people to support me. But one thing I will say... I have NEVER asked “why?”. I have a strong Faith and I beg God for the strength to endure this. I humbly submit to God’s Will, whatever that may be.

Ladies, your stories have given me new insight as to what’s ahead. You are all very couragous, inspirational women! I hope I am able to cope with this.

Please pray for me.

Peace to all of you!

MarineMomJ

MarineMom:

I am so sorry to hear about your diagnosis and troubles with health insurance coverage.

I guess my question is (1) do you have someone to be there with you for the surgery and afterward, friends, or family?) (2) has the surgeon told you anything about the tumor besides it being malignant - size? markers? any lymph node involvement?

The reason I am asking these questions is to tell you that I had Stage III cancer, my tumor was 5 cm., I had 7 lymph nodes removed, one solid year of chemo, 6 weeks of radiation, hair loss, etc. but now I am cancer free and am undergoing reconstruction. There IS light at the end of the tunnel.

Chemo can be rough, depending on what drugs they will be giving you - I had Taxotere, Carboplatin and Herceptin and it wasn’t that bad. The radiation treatments will make you tired, short of breath and there is some burning of the skin. But my radiologist gave me great advice pre-radiation treatments: If you apply Aquaphor (a cream/gel available at all drug stores) BEFORE you even start your radiation treatments on the affected area at least once and then three times a day DURING radiation, it really helps.

There are many other bits of specific advice all of us can give you as you go along with the chemo, etc. but basically I believe you can expect and find lots of support here.

Dear Bunches:

Thank you for your concerns. My best girlfriend will go with me to the hospital the day of the surgery and stay there. They expect to keep me in just overnight, barring anything going wrong.

The only thing I know about the tumor is that it is very large and the surgeon called it “T2” which means it’s big. According to an ultrasound I had last month, the lymph nodes looked clear and the PET scan was clear. I’m not sure if that means anything. They said they will know what stage it’s in when they open me up. (I have a feeling it’s Stage 3.)

I’m glad that there are ladies on here like yourself who can help me through this difficult situation. I’m very scared, mostly of the chemo and radiation. I don’t want to be sick. When you had chemo, were you throwing up? Or just nauseous? Could you eat? I don’t have anyone to take me to the treatments, so can I drive home?

Thank you for your kind interest. I will continue to post on here and it makes me feel better knowing there is support here.

Fondly,
MarineMomJ

Sweetie:

You may NOT be Stage 3 and if no lymph nodes are involved you are doing good. My lymph nodes were involved, 7 of them, when the surgeon told me he looked worried, the oncologist was worried too and darn it I fooled them all and I now I have had TWO clean pet scans.

Please call the American Cancer Society right away. They have an 800 number which you can find at their web site. They provide FREE rides to your chemo appointments, radiation appointments later on down the road, other doctors visits, Pet Scans or heart test or any appointments to do with your cancer. I have been using them for almost a year off and on and they are wonderful. These are folks in your area who are volunteers. They will pick you up at your home, drop you off at the cancer center or wherever and pick you up when you indicate you need a ride back. These times will vary according to whether you have all day chemo (say 9:00 a.m. to 3:00 or 3:30 p.m.) or just afternoon chemo from say 1:00 p.m. to 4:00 p.m. You need to call them one week before you need a ride and then someone will call you back with the name of your driver and then the driver will call you to confirm your address and the times, etc.

My chemotherapy in the beginning was once a week, week one was the all day session, week two and week three just half a day and then week four another full day.

The volunteer drivers often have relatives who have had cancer and they are great people - totally kind and understanding.

The Cancer Society also offers a counseling service whereby a representative will call you if you wish and talk to you about your concerns, fears and questions. These call volunteers have all had cancer and are now in different phases of recovery - some for five years, some for many years. They, more than anyone can identify with what you are going through.

I would strongly advise calling and establishing rides when you know when and how often you need chemo. You will receive a schedule from the oncologist indicating which days these will be. Sometimes your doctor will ask that get a blood test the day before chemo. Any lab close to you will help you with that - these are just standard blood test to check your levels of white blood cells, red blood cells and other readings once you have started chemo.

I did not get nauseous from chemo. Everyone is different, depending on what chemo drugs you need. In my cancer center I was given prescriptions for pills to take the day before, the day of chemo and the day after. These were anti-nausea pills, allergy pills and one other.

In addition, they give you the anti-nausea medicine by IV before your main chemo drugs are given. Like I said my most annoying reactions or one of them was bad heartburn - to combat that I just ate like a baby until my stomach settled down - lots of soups, puddings, applesauce, bland ice cream, yogurt (not too sugary), weak tea, waffles or toast but don’t put a lot of sugary jellies or butter on them if your stomach is acting up. You will see what causes a reaction and what I did was just avoid those foods for a while.

You can actually drive yourself for your radiation treatments - you will not notice adverse affects - at least I didn’t - until maybe the third week. I found that morning appointments are best when you are fresh and hopefully have had a fairly good night’s sleep. I would go as early as possible, the radiation treatment doesn’t take long and then I would go right home, sometimes I would take a nap, other times I had enough energy to do a few things around the house.

I was incredibly fortunate that I did not have to work during all of this. My husband has been exceptional. I have made friends for life, most of my family (with a few exceptions)have also helped out.

You will find friends and supporters here and through your contacts with the American Cancer Society and you will meet wonderful nurses and other patients when you start chemo.

If there are any other questions you have as you go along I know all of us here will be glad to help you.

Don’t be scared - you will get through this. God bless you and good luck with your surgery.

Bunches

Dear Bunches:

You are certainly a wealth of information!

I will call the ACS and obtain all the information I can about the rides, etc. That’s great! That’s a stressful situation that can be alleviated. Sometimes I feel so lost. All my ‘control’ is out of my hands.

Today I was thinking, here I was rolling along in my happy way, until THIS... now it’s screwed up every phase of my life. *sigh*

With all your support, I’ll continue to post on here. It’s good to know there are women like me who are scared, apprehensive about treatment, and need positive reinforcement.

Thank you for responding to me so quickly!

God Bless You!!

MMJ

Go out today and get a copy of Suzanne Somers’ book on fighting cancer, “Knockout.” Do not pooh-pooh this beacuse she was a mediocre actress on Three’s Company. The book is 90% not about her, but full of serious interviews and EXCELLENT advice from doctors who are CURING cancer without destroying one’s health through chemotherapy. In some cases chemo is still a part of treatment, but not always.

Everyone with cancer of any kind NEEDS to read this book. Conventional medicine is bought and paid for by drug manufacturers. Some things they do are very right and will save your life, and some things they do are simply because everyone does them, and they reduce the patient to a shell of a person, with no immune system or health left.

Many people are able to live a RICH, PRODUCTIVE, HAPPY life with cancer as a low chronic disease, but they and their bodies are strong. She lists many doctors in the book for you to visit or consult with to get your second opinions.

Don’t be one-dimensional in your learning about or battle with cancer. INFORM YOURSELF from all sides. It could be the most important thing you do. This book is a good starting point.

Just looked through the thread and am STUNNED to find, among FReeper women, that NO ONE has informed herself of non-traditional, yet still western MEDICAL, cancer treatments.

I am saying a prayer for all of you ladies suffering that all of you will receive a full healing.

But I just know that if I had a disease, I’d want to know MORE TRUTHS about it than traditional oncology and drugs. I know that true health, unrelated to the cancer fight, is NOT something you will hear from most doctors. Most doctors do NOT make sure you are taking in far more Omega 3 fats than Omega 6, they never make sure you are preventing illness with your correct dose of vitamin D, and other very important health actions. Why would oncologists ever consider treatments that do not involve drugs? They are mostly reading and learning the SAME THINGS, and the answer is always in chemo.

PLEASE at least read Suzanne Somer’s book that I mentioned in the previous, because those MEDICAL DOCTORS within have been doing some remarkable cancer treatments that allow you to KEEP your immune system and health. Isn’t that worth at least READING? You do not need to ask your oncologist’s permission to READ a book.

Good luck to all of my wonderful FReeper sisters fighting this battle.

I guess if I was to suffer a broken back, now would be the time!
http://www.freerepublic.com/focus/f-chat/2664766/posts#comment
Taxol might help regenerate spinal cord!

Welcome to MarineMomJ! It’s all scary and confusing at 1st hon, but once you get all the ‘help’ sorted out it gets easier. Right now I have a local B/C foundation helping me with my utilities. Another is helping with gas costs for trips to chemo. Of course, the ACS is a wealth of assistance. FREE WIGS, too! My cancer center made sure I knew all the help available and helped me with forms. I guess some places aren’t as helpful. Sorry you’re having such a time of it!

Jane? How’s the chemo going for ya? I’m still plodding along. No real bad craziness to report. : )

Hey...someone needs to get a Ping list going for here. I had thought activity had stopped and I hadn’t check back here lately.

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