I'm new at this journey. Need support

[bcsurvivor]

Hello Her2 Warriors,


I’m new to this site. After several months, Oct 09-March10, of testing, which included mammogram films, Stereotactic Core Biopsy, Lab work, MRI, 2 breast conserving surgeries, and a Sentinel Node Biopsy… I found out that I had a cluster of IDC stage pT1a, er- pr-, Her2neu 3+, and more areas of DCIS, with no Lymph Node involvement.


I’m glad I chose a wonderful team of doctors to work on my case. My surgeon told me that, after two partial mastectomies, she needed to do a mastectomy. After much thought and research, I considered my risk factors, and decided to have a bilateral mastectomy and reconstruction.


When all this started, I was 49 and getting ready for the big 5-0! I have always been pro-active about my health. I am the type of person that believes in preventive medicine, so I have been having mammograms yearly since I was 40. I also make working out, eating right etc… a part of my life. I don’t smoke or drink. What happened? I have been on an emotional rollercoaster!

I just met with my oncologist and was told my case is a “Grey” area. She told me I may be a candidate for the Taxol/Herceptin trial for people with early stage cancer Her2+, but, it turned out, there was a glitch. When the very small area of micro-invasive cancer was removed from my breast, there wasn’t enough tissue to test for Her2+ or –. When I had my biopsy, the tissue was tested for Her2 using 2 lab tests (IHC & FISH), and the report said AMPLIFIED Her2neu 3+.

So… my Oncologist gave me two choices:

· She would give me the same treatment protocol as the trial.
· I could do nothing, and she would see me every three months.
I didn’t think waiting was the right option for me, since I don’t want to wait for it to return. Even if it did return after having the Chemo and Herceptin, I would know I did everything I could, and I’d go from there. If I wait, and it returned, I would regret not doing the chemo/Herceptin. I realize there are side effects, but I am healthy and fit, so I hope this will help me get through it a little easier. I also have a wonderful support system to keep me positive. I am a positive person by nature, anyway. This has been a very difficult.

Thank you for taking the time to read and respond to me. Any tips or encouragement to help me get through this would be greatly appreciated!!

bcsurivor

[krisvell]

Hi bcsurvior;
I can't say anything about the decision you need to make but I can share with you my experience with the Chemo treatment. I stayed positive and did what I love to do... which for one thing was exercise (running & Yoga).
From my signature, I had TCH, Taxotere, Carboplatin & Herceptin and did not have much in the line of side effects.
Everyone is different.
The only thing that stands out is the first time I got neulasta (day after treatment), I had moderate bone pain for a day or two. After that, it was no problem.

I too like you always stayed on top of my health and also regularly exercised. For the last 5 years, I ran a 1/2 marathon and came close to running it during my treatment. A month before the race and into my 4th treatment, I was able to run 8 1/2 miles. I just kept running; not as far; not as fast. I found a comfortable Yankees baseball hat and velcroed in a hair piece so I fit it with my running group. I really think doing health things you enjoy during treatment helps a lot.

So if you decide to do chemo, just move forward as best as you can and try to do the healthy things that you've already done I really believe will help you get thru this a little easier.

[LoisLane]

Hello bcsurvior. Just read your post and you seemed to have been through pretty much what I went through in November 2008. I also had lumpectomies on both breasts and then had bilateral mastectomies. I had my chemo in February 2008 and although it does seem like a difficult thing to do you will get through this stage of treatment and you will come out at the end feeling strong and determined to carry on and get healthy and fight this damn thing. One step in front of the other and you have a lot of support around you with family etc. I'm glad you found this support system here and there really are so many wonderful women and men here who will give you support and answer your questions on this journey. Take care.

[Bill]

Hello, Bcsurvivor! Welcome. You have come to the right place for questions and answers, and already received some. Please feel free to ask anything, and comment as you wish. As you stated, you have a proactive personality, and sitting there, "doing nothing" might not be the best idea. It sounds like you have a good team of doctors, but never be afraid to seek additional counsel. There are alot of very wise, experienced warrior women here who can be of aid to you. Thoughts and prayers, Bill

[bcsurvivor]

Thanks for the good advice! I'm so glad I found this website.

bcsurvivor

[Karen Wheel]

I will re-state - from the other post you had here on Her2 ---

I would absolutely do the Herceptin --- if you have to do the Taxol - then do it. It sounds like they are pairing the two drugs together and well, its okay but I am thinking that my choice of Navelbine (because I was early stage) and the Herceptin was a great choice.

I also will concur with your feelings of "what went wrong!?" .... I felt the same but I also have found, after a year of reading and studing diet and nutriton. That --- well, I thought I ate really healthy, but I didn't. Now I am a vegan. I only eat things that are whole foods. I juice at least once daily. Also, I eat LOTS and LOTS of fresh (raw!) veg. I try to eat 50-70% daily raw. I don't always get that ratio correct, but I feel better and stronger when I do.

There is no substitution for that phrase we heard as kids "you are what you eat".

I have came to terms that for some reason my body's immune system did not ward off the cancer when it started (years ago) and for some reason the immune system just missed it. Some people are lucky - eat badly, drink, smoke, and they live forever --- I know it sucks! But it happens. I just know that for some reason, some of us get cancer. So --- how do we combat it - well, I believe we have to change everything we did before and try a new way of living and eating. If not, the cancer surely will come back.

I can't say this for sure - as I'm only a year in - but I am hoping that in 5 or 8 years I can say I'm still NED and that the diet and changes are working to keep me cancer free.

Take care- feel free ask more --- its good and healthy!

:-)
Karen

Hello, To you wonderful women whom are seeking help, information and more importantly support. Like myself I have been recently diognosed with HER2+ DCIS and calsification on otherside, same breast. Ten days ago I had left mastectomy and axillary clearance of centinal node and twenty lymph nodes removed. I am currently trying to make sence of all ive experianced to date, and about to start chemo and Herceptin, with not much understanding of the process yet, rather not sunk in even though my oncologist has explained my new found and sudden, unxpected journey. It seems after reading other womens discription, I am not so knoledgable of my grade and or stage. Also adding salt to injury my surgical sight has become infected, suspect golden staf from surgery, how the f*** that happend I just dont know. Am at the angree stage still and even though threw this time of only 3weeks past I have not cryed yet, I guess my coping mechanisum for now. Anway, Im so glad I found your sight as I have a very small familly, just my sister, mother, and neice. I am 44 years of age with no children.
Thank you to all, hope to hear from someone. Cath

[whatz]

Hej Cath,
What feel is really is probably what everybody goes thru (at least I did, the shock, trying to make sense....), at least it sounds familiar to me. First things first...they will have to get the infection under control. I doubt they will start chemo with you if your immune system is already compromised. Have they talked to you about a "Port"? It's an access point to your body's blood system that is easier to use/find than just your veins (who get taxed enough by chemo as it is). I don't have any problems with mine and I much rather have the chemo through the port then them trying to find a vein. (the port is just a bump under your skin, no external appendages).
Hang in there.

[ElaineM]

First of all a combination of things can cause cancer. Even though we try to be proactive and take care of our health, excercise and eat healthy food there may be other factors like environment, stress or family history that can contribute to cancer. The main thing is that you can do whatever you need to do starting today to increase your chances of a long and healthy life.
Take good care of yourself. Hang in there and keep putting one foot in front of the other.

[BonnieR]

I recall when first diagnosed the doctor saying "this is the hand you were dealt" and I tend to think of things that way. Cancer does not seem to have much rhyme or reason to who it strikes. Certainly it is always wise to eat well and care for oneself.
Catherine, you might consider starting your own thread so as you move along in treatment, you will have a place to ask questions and not have them get lost.

[Bill]

Bonnie, good advice to Catherine. My first post on this site was moved for me by Jean, a kindness I will never forget. Perhaps someone can move Catherine's post for her. I'm sure she will not mind. I don't know how or I would do it. I'm still trying to figure out how to program my VHS player to tape Criminal Minds next week.

[BonnieR]

Good suggestion Bill. I am sure someone will come to the rescue.I am still trying to figure out my 8-track! lol

[misquam42]

Hi Everyone
I was diagnosed in Feb... surgery 1 for DCIS, Surgery 2 ... found IDC Her2+ SNB no lymph node involvement.I thought I was just facing radiation.
Onc has scheduled MRI on Monday and echocardiogram. Then because of the Her2+ even though it was small...3mm, I may have chemo/herceptin and er+pr+hormone blocker for 5 years after radiation. I am postmenopausal and very new at this. Thanks for any kind words or words of wisdom for those who have been on this journey.

[Karen Wheel]

Cath- you should start your own thread - but also - my advise - is READ everything - ask a TON of questions.... and then make decisions - don't let the doctors rush you. I found here in Italy that they tend to want you do everything they "say" is normal treatment. I find that there are a LOT more options .... and we need to take a deep breath and stay in command of our bodies (we are the bosses!) and make informed decisions. I would say my best hope and overall theory is that diet and nutrition is more important even than the actual "cure" they ask us to do. And... if you really read --- cancer isn't CURED from chemo - chemo just reduces the tumor load --- they do it for precautions but I really think that we have to eat our way to health. See my list of books - you can also google Susanne Somers - or read up on her controversial book (I have it on order but will take a few weeks to arrive from the US) but there are lots of good books out there to give us alternatives - and to help us rebuild our bodies and immune systems. In reality cancer is a immune deficiency disease.... we can not expect a different outcome if we continue doing the same things - eating, lifestyle, stress, meat and animal products, sugar .... etc. For some reason our bodies have not warded off cancer - we got it --- so now we have to do more than just take the medicine if we want to live long term. (not only my beliefs - many, many, many people have gone before us and have lived and cured the cancer long term --- even HER2!)

Few of my favorite sites with loads of information:

http://www.i-amperfectlyhealthy.com/index.html
http://www.cancerfightingstrategies.com/index.html
http://www.carcinomacancer.org/cance...ph-factor.html
www.drday.com
http://www.cancerrd.com/
www.livingfoodsinstitute.com
http://cancermonitor.blogspot.com/20...reatments.html
http://www.creativehealthinstitute.com/wheat_grass.htm
http://www.healthquarters.org/
www.gerson.org

Favorite Books:

The Cancer Battle Plan Sourcebook (this is the updated version) by David Frahm
Crazy Sexy Cancer Survivor – by Kris Carr
Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS
Eat to Live – by Joel Fuhrman, MD
The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM
A Cancer Therapy – Results of Fifty Cases – by Max Gerson, MD

Live long and strong –
Karen

[Karen Wheel]

Misquam42- see my note above (most applies to you) but as for chemo - since you are so early stage - I would really ask about doing the chemo I did --- Navelbine - it is less toxic and they say when coupled with Herceptin it has the same results as higher much more toxic chemo therapy. You can google the words Herceptin and Navelbine and find articles that support this.... thats how I ended up taking it as my oncologist here in Italy knew I was really against the toxic levels in chemo - and said I had to read up on all her options (she gave me 3 options for chemo) but that I had to do one to get the Herceptin (which I wanted - and just finished my year of Herceptin a few days ago) so.... thats my advise...

See my signature for more - feel free to email me at wheelistic@yahoo.com - if you (or anybody) wants more info on diet/nutrition/pH and other supplements...

:-) Karen

[Jackie07]

BCSURVIVOR, Cath, Misquam42, and other new comers,

Welcome.

There is a (or several) thread(s) about 'long-time survivor' you all might want to check it out. Just type in the terms in the Search window on the top right and you can locate past discussions on certain subject/questions. Just be aware of the time of the postings.

Most survivors have their treatment history listed in the 'Signature' field (under the 'User CP' function). If you look at other members' signatures - especially other new comers' signatures, you can see the current trend of the treatment schedule. Since I've been 'actively participating' on the Board 3 years ago, I've seen lots of changes and many successful stories. Keep in mind that many of the 'cancer-free' sisters are often not actively participating. I wanted to emphasize this because there are many, many successful stories out there.

Getting plenty of sleep, keeping a positive attitude (helps to release 'endorphin' to improve our 'immune' system and make us happy), eating well and exercising regularly (increases endorphin also)to maintain our physical strength all contribute to a better cancer journey and better outcome.

Keep us posted on your progress and ask as many questions as you like. Don't forget to share what you've learned from your oncologists - they might have something new that can benefit others.

Welcome again.

[misquam42]

Hi Everyone,
Thank you for all the kind words. I have just completed my second chemo treatment and am doing fairly well. Although I drink plenty of water it just isn't enough!! I have had 2 infusions of fluids for dehydration. The first chemo treatment caused a few problems, but I am hoping for the best this week.

[Jackie07]

Pat,

Are you taking any anti-emetic medicine? The only reason I could think of for your dehydration is that you are losing fluid because of vomitting. If that is the case, you might want to talk to your treatment team (the oncology nurse is the one that helped me the most) and get better pre-meds and after chemo care.

I threw up a lot after my first chemo. But was able to go through all six rounds thanks to the pre-meds and post-meds. Eventually I'd even gained several pounds.

Hang in there. Every problem has an solution. Modern day chemo needs not make patient suffer unnecessarily.

[NanaJoni]

Pat - I'm really new too, in fact, having my first chemo (TCH) treatment tomorrow. But my oncologist gave me prescriptions for compazine and Zofran to take before treatment. The onc. nurse also said they'd had some real success with patients taking a Zyrtec (or generic which is really cheaper) once a day for the seven days after treatments to help the nausea. You should ask your doctor before trying that but it may be worth a try. I'll post in a few days if it helps or not.