I'm New - Would Like Advice

[newmom06]

Hi everyone,
I'm new to this site. Thanks so much for having it!

I'd love advice to make sure I'm doing everything possible to fight my newly diagnosed cancer.

In August of 2006, at the age of 35, I felt a lump/thickening of my right breast while I was breastfeeding (pumping) my four month-old baby boy (our first child.) There were also broken capillaries on the outside of my skin. I don't remember feeling this thickening in June, when I did a breast-self exam. [And when I was about 6 or 7 months pregnant, this breast had leaked a little blood, as my breasts were preparing for my baby. I went to my OBGYN right away, who did a hand exam, but didn't feel anything. Plus, she said this can happen sometimes during pregnancy. The blood stopped, and never showed up in the breast milk....which I could see, since I would pump and feed my baby using bottles.]

It all happened so fast. Although my OBGYN didn't think it was anything (other than a blood clot or something), she sent me in for an ultrasound. On the ultrasound, they found a mass around 2.5 centimeters. They had me do a mammogram right there, while I was still in the office. This showed some calcifications.

I was sent to a surgeon who performed a biopsy during my first appointment. He used the ultrasound machine, to guide him during the biopsy. I remember how shocked he was to see, what looked like, a large blood vessel right next to the tumor. To me, it looked like a mini heart pumping, right next to the tumor.

The results came back as being invasive ductal carcinoma, and a nottingham score of 8 out of 9 (grade III of III.) Wow!

Then we spoke with tons of doctors and had lots of tests....the cat scan, mri of the left breast ad brain scan were all clear. Except for showing some activity in my lymph nodes. My husband and I decided to have a mastectomy on the right side, and to start the reconstruction process. The surgery went well, but we didn't get the results we were hoping. The tumor was 6.5 centimeters, 10 out of the 14 lymph nodes were positive, I was estrogen/progesterone - and HER 2+++.

[Has anyone heard of a tumor growing so fast? Some of the doctors said it couldn't have grown that fast. Others had said it was possible. I was confused that on the ultrasound it was showing 2.5 centimeters, and then about 3 weeks later it was 6.5 centimeters. One week, they couldn't feel the lymph nodes under my arm...the next week, they could.]

After 3 opinions (from Rex Hospital in Raleigh NC, Duke Hospital, and from an Independent Oncologist in Long Island, NY), who all agreed on the treatment plan, I started chemo. I'm doing AC every 3 weeks for 4 treatments. Then I'm going to do Taxol and Herceptin treatments for every week for 12 weeks. Then I'll remain on Herceptin, every 3 weeks, until I've taken it for a year. Lastly, I'll have 7 weeks of radiation after my 12 treatments of Taxol/Herceptin.

[For those who have been on these drugs, how does Taxol/Herceptin compare to AC, as far as side effects?]

I've tried to add more fruits and vegetables to my diet...I participate in a local support group through the hospital...I'm trying to keep with my regular activities, and not sit on the couch feeling sorry for myself. I have great support from my family and friends. For the most part, I'm keeping a positive attitude and know that I can beat this...and then there are times where I'm so scared!! (especially about 5-6 days after chemo, where I get real teary and emotional, and the severity of all of this hits me. It has lasted for about 2 days, with each of my 2 AC treatments that I've received so far.)

Chemo has been better than I was expecting...with using Emend and Decadroid (spelling?)...and Ativan. Although I still have a long road ahead of me...2 more AC treatments and 12 more Taxol/Herceptin.

Is there anything else I can do? Any other things I can do to increase my chances of survival?

Thanks so much!

[tousled1]

HER2+++ breast cancer is very aggressive and fast growing. I had 26 nodes removed - 14 were positive. You are on a good plan with the A/C and then the Taxol. You said that you would remain on Taxol for a year -- I'm hoping that it was just a typo and that you will be remaining on Herceptin for one year. Just make sure that before you begin the Herceptin that your oncologist sends you for either a MUGA scan or an electro-cardiogram. While on Herceptin the standard protocol of to have the MUGA or electro-cardiogram repeated every 3 weeks. Reason is to keep a check on your LVEF (left ventricular ejection factor). If it drops to 50% or lower then Herceptin must be stopped until the LVEF goes back up. Good luck to you.

[peace]

hello
welcome to this site!! we are share eachothers expiriences and wonderful knowrige.

I am sorry to hear that you got monster duing a so busy time your baby.
I went almost same way .but mine was chemo first and surgery..I'll
take a radiation therapy next week.
I was A+C X4 and taxtere+herceptin x4.duing AC idon't have energyat
all and start THwas much more worth I went bathroom so many times.
my friend sugested take EMEND before the chemo for nausea.(my friend is surviver)
I start taiking that It was miracle!! stop going to bathroom!!
EMEND is very expensive medicine.I don't think many docter tell you about it.which is very wrong. you can ask about that to your doc.
if you need and if you don't get it please let me know.

ye~s. diagnosed was 3cm . it did shrink to -1cm but grow back (doing chemo) so quickly !!
-1cm to 1.5cm about 3weeks.

I think good idea to keeping busy and excise as much as you can.because if you went too low it's hard to built up your strength.

and drink as well..if you don't like drink try another and watermelon.
try to avoid caffeine.
listen to your body your body let you know wthat you need.

I hope you are sleep enough. and I hope next chemo going to easier for you.

big hug&peace

take care

[newmom06]

Hi,
Thanks for the responses!

Yes, it was a typo. I'll remain on Herceptin for 1 year. Did you have any side effects with Herceptin, other than possible heart issues? My doctor has already done a MUGA scan; but that's good to know that they should keep doing it, while I'm on Herceptin.

Yes, I'm on Emend and it works wonders. I have the weakest stomach, but I haven't had an issue with that at all. That was a big fear of mine, since I was even on Zofran during my pregnancy for morning sickness, and it didn't even work for me. And my health insurance has ended up being really good, because I don't have to pay anything for my chemo drugs, like Emend. So I really feel blessed!

Thanks!

[Bev]

Taxol and H are generally easier than AC. Some get extremity pain with taxol. Start B6 during this treatment for this. Fatigue, cloudiness and appetite increase due to premeds. Keep up with your MUGAS to make sure heart is OK. Best of luck with it all. BB

[gin-tx]

Sounds like you are doing all that you can do. Her2 breast cancer is very invasive and fast growing. I was diagnosed for 2nd time in 10 yrs, different side, with ductual carcinoma, when the surgeon removed wider margins and lymph glands (only one positive) it became Her2. Then he sent me for a bone scan, something showed on spine. Following was an MRI, changed everything to Metastatic Grade IV carcinoma. I'm on herceptin/aridia and Femora. You are quite young and have a lot of wonderful things going for you. It sounds like you have had so many opinions and various exams, you must be on the right track. Keep up the support group if you are in one and family/friends support. Keep me informed as to your progress. I have not had the drugs that you are being treated with as I had to start 18 radiation treatments before they could begin the Herceptin. Think I had about 7 or 8 before first Herceptin treatment. Because of tumor on spine could hardly sit thru treatment but as it began to decrease it became easier to sit thru the treatment time.

hugs,

ginkott1@aol.com

[RhondaH]

I'm sorry you are going through this. I TOO am the mother of a 5yo son and want to do EVERYTHING I can to keep from EVER getting this again. My aunt in Chicago sent me this article and I do it RELIGIOUSLY for 6 days a week (Sun I rest/splurge:) In the almost 2 years since my dx, EVERYTHING I have read in the news, articles, publications quantify doing EVERYTHING Diane says and I do. I also take a TBS of Olive oil in the morning, drink a glass of Concord Grape juice in the morning, put Desitin on my feet, take Magnesium, COQ10, A&D supplements and when the time changes will add an EXTRA dose of D until daylight savings ends. If you want to know about the grape juice, desitin, and magnesium, put it in the "search" bar along with the name Gina P (a member who sadly, no longer posts) and she can explain it in detail. I figure, I treated my body HORRIBLY the first 40 years of my life, now I'm going to be EXTRA good the next 40 as I want to see my 5yo AND my grandchildren grow up. Take care and God bless.

Rhonda

http://www.prevention.com/article/0,5778,s1-1-93-43-270-1,00.html

[tousled1]

NewMom,

Regarding side effects of Herceptin -- there was a recent thread dealing with Herceptin side effects that is very lengthy and detailed. Here's the link.

http://www.her2support.org/vbulletin/showthread.php?t=23696&highlight=Herceptin+side+effects

[peanutsmom]

Hi there new mom, I have never posted before, but wanted to let you know I had nearly the exact same experience. I had my daughter in June 05 and breast fed using a pump. I felt a lump in January 06, my ob/gyn saw me two days later and could not asperate it so she sent me to get ultrasound and mammogram. I had a biopsy two days later and confirmed I had breast cancer. I also had Grade 3 (8/9) but Stage 1, no lymph nodes. However, we did not get clean margins so went in and had masectomy and they found 2mm in lymph node breast cavity. Er+Pr-, Her2 + (44 Oncutype) I had 4 cycles on A/C 3 weeks apart, they almost killed me did not respond to Emend, Decadron, Ativan or Zofran...12 weeks of Taxol and Herceptin (cake walk) now I am just doing Herceptin every three weeks and trying to decide on removing ovaries and hormone therapy...this is a very long road but just stay focused on your baby and faith and you will get through this. I even got a promotion at my job during my chemo treatment. I will keep you in my thoughts and prayers. You are recieving the best protocol for our cancer. Hugs, Lisa PS Hair grows back on Taxol !!!

[Moni]

Peanutsmom, did you get any information regarding hormone therapy? I'm doing research for my brother's wife here who is in Germany and the doc wants to discuss in the future any hormone therapy. She's her2+++ with a single mastectomy, chemo, (no radiation yet- they are not sure whether or not they should prescribe it... ARGH), 1 lymph node smaller than 1 mm effected so far.
I'm trying to find out what exactly can be done here compared to her "treatment" in Germany which isn't a treatment at the current time. I guess due to their health system things work differently....
She's complaining lately about bone pains and I'm wondering if she should get a scan done or check on the bone density? Any ideas?
Good luck!!!
Moni

[peanutsmom]

My dr has asked me to partake in a clinical trial, it's Phase III evaluating the role of ovarian suppression and the role of Exemestane (Aromasin) Adjuvant therapy for premenopausal women w/ ER +...basically it's a study to see if it's better to take tamoxifen alone, tamoxifen + shutting down ovaries by shot or radiation, or new drug called exemestane (Aromasin) plus shutting down ovaries is better...I want the third arm of the trial, so I'm thinking I might just go that route and not participate in the study because it's random...I have also been considering having my ovaries removed and taking Arimedex..I will go with whatever presents the best odds of recurrance not happening...I think the bone pain could be from Taxol, if she has the same protocol as me, alot of women have pain with that, I just had horriable, and I do mean horriable, heartburn. It made me crazy...I wish your family the best, let me know if I can help...much love, lisa

[gin-tx]

Dear Moni,

You have a lot going on. My surgeon did a bone scan as a routine test, something showed up, had an MRI and I had a tumor on spine that was malignant, had to be dealt with first. So I started the Herceptin while I was doing radiation (18 treatments to spine and lungs to keep it from spreading). I was having pain in back, difficulty breathing. By all means do a bone scan, non invasive, not that bad to have performed, no pain.

As far as other treatment for hormone suppression, my onc gave me Femora but I have already had a complete hystomectory many yrs ago. But your body still produces hormones in small quantities. Good luck and keep me informed of what you decide. I know docs in other countries do things that US drs do not prescribe.

hugs,

ginkott1@aol.com (I live in TX also and feel I have gotten very good medical care). Went to 3 onc before I made a decision, am so pleased with my onc but you have to find who is right for you. SA has a big UT medical center. Teaching hospitals are usually excellent.

[Bev]

Moni, My doc is of the opinion that she would do the scans only if the pain is present most of the time. She will do xrays though. Neulasta for increasing white blood counts will also make you feel like you've been put thru a wringer. But it only feels that way for a week.

If this pain is causing undo anxiety she should tell them so. If a scan is what it takes for her to sleep at night they should do it for that reason alone. BB

[Moni]

Gin-tx - it's not about me - it's about my brother's wife who is located in Germany. ;-) I know, it sounds confusing. I live in San Antonio - and to make matters worse, she's not the best communicator right now, on top of the time difference of 7 hours.
All I can do is let her know y'alls opinion and make sure that she will find the right oncologist - believe me - I wish I could be there with her right now and go to the appointment to ask all those questions. I am sure that she's capable of doing so, I'm just afraid that she's giving up too easily since after her single mastectomy last week the docs dropped her already like a hot potato. "Go back to your primary care manager...". Is this ridiculous or normal?

Bev - I will make sure to post and translate everything for her and hopefully she'll be able to convince her PCM to get active. Thank you so much!

Newmom - my thoughts are with you and your family. It helps so much to have someone to talk about and understand your fears and feelings and at the same time to get informed and on top of the disease. I've read a post on this site from a woman who mentioned that her girl will be the best informed teenager about breast cancer. I thought that was very inspiring and encouraging. To me it means to be on top of the disease and trying to control it rather than have the disease control your body. God Bless!

Thank you,
Moni

[peanutsmom]

Moni, I am not sure why her dr (oncologist?? or surgeon?) is dropping her, that doesn't make any sense...I also had a masectomy (single) but no radiation...She should not be discouraged as this is very treatable...Is she done with all her chemo? What chemo did she take? Sorry if you answered this already I still have chemo brain...She might simply need a new doctor, I'm sure there might be a doctor that is better informed and a better communicater (sp?) for her during this dark journey...I know that I am very nervous about recurrance and I think every thing is the cancer coming back, if that is her concern on the bone pain then she should have a scan...she shouldn't ask for one, she should demand one...I'm sending prayers and good thoughts to her and you...Lisa

[gin-tx]

I totally agree with Bev. Your sister should demand a bone scan. I think most docs in US do as part of routine diagnosis to see if anything else shows up that needs to be addressed. If I had not had one I don't know if I would be alive now as they picked up the tumor and also it changed the entire status of my diagnosis.

Good luck and keep me informed. All of us have to support each other.

hugs,
ginkott1@aol.com