Want to talk with ER/PR neg and HER2 pos

[Catherine]

Hi, I am new to this site. I am trying to figure out what the difference is between being ER/PR negative vs Er/PR postive along with my Her2 postive diagnois. I am 58, diagnoised April 06, Adricmyicen/Cytoxin and then Taxol. Bilateral mast. Sept 06, 33x rads. Started herceptin Dec 20, 06...with a year to go. DX Stage 2 BC. 3 of 14 nodes positive.

What is the difference between er/pr negative vs positive?
If my lymph nodes were involved does that mean metastic BC?
What do you think about the accuracy of HER2 diagnois. I read Angel from Alaska's post.

I actually am doing well. Just anxious to feel like I can truly beat this DX.
This is my first post here. Have been on the Komen site alot.

All the best, Catherine Davis in Oregon

[tousled1]

Catherine,

I took the liberty of moving your post from "Profiles in Courage" to the "HER2 Group Forum" so that you would receive replies.

Having lymph node involvement means that you have advanced breast cancer, not metastic breast cancer. Metastic is when the cancer has invaded distant organs of the body - liver, lungs, bones, etc. Being hormone negative means that you will not have to take anything to suppress your ovaries from producing estrogen. Being HER2 means that you have Herceptin available to you and also in February 2007 Tykerb is to be approved by the FDA.
There are two tests for HER-2

IHC test (IHC stands for ImmunoHistoChemestry) The IHC test shows if there is too much HER2 receptor protein in the cancer cells. The results of of the IHC test can be 0 (negative), 1+ (negatiave), 2+ (borderline), or 3+ (positive).

FISH test (FISH stands for Fluorescence In Situ Hybridization). The FISH test shows if there are too many copies of the HER2 gene in the cancer cells. The results of the FISH test can be "positive" (extra copies) or "negative" (normal number of copies).

Only cancers that test IHC "3+" or FISH "positive" will respond well to therapy that works against HER-2. An IHC 2+ test result is called borderline. If you have a 2+ result, you can and should ask to have the tissue tested with the FISH test.

Hope this answers some of your questions.

[KellyA]

Hi Catherine,

You've come to a wonderful place. There are many terrific women here that are very knowledgable, but most of all very supportive and caring. You will have a lot of help navigating through this. We have a very similar dx- there are many informative threads on er/pr + and - . You should be able to do a search and they will be accessible.
Things have come a long way for Her2+ people- with Herceptin and many other new treatments, there is alot to be positive about. Many women here will inspire you and lift you up.

Love, Kelly

[tricia keegan]

Hi Catherine

As you probably know I spend a lot of time on Komen too!!
It's worth coming here often as the people here are so knowledgable on
our type of cancer and also so couragous,it gives me confidence just reading
their posts.
Unlike you I'm highly triple positive so had my ovaries removed earlier in the year and now take Arimidex.
The side effects are not to bad and well worth it if it keeps the cancer away!!
I also had 3 positive nodes so we have that in common.
Hope to see you hear more often.
Tricia

[Heart Sutra]

Hi,

There is a lot of info on the web regarding your questions.

You asked the difference between er/pr neg, and er/pr pos.

Whether or not there are estrogen and progesterone receptors with the cancer cells. This determines whether the treatment you'll receive is hormone based or not.

Lymph node involvement does not mean metestatic bc. It means that there are cancer cells detected within those lymph nodes, it does not mean that there is cancer elsewhere in your body.

The accuracy of HER2 diagnosis was well answered by Tousled1 (Kate).

Welcome here, We have found some of the best people... very warm and caring souls who are full of information and compassion. Some answered you already! We are new to this too, and we thank you for being here.

and yes... this dx of HER2 is not what it once was. There is reason to think it is the most treatable of cancers now.

[Catherine]

Thanks to everyone who answered me and welcomed me to this site. Your answers were very helpful. I am not exactly sure how to navigate on this site, but I will get better. I might even figure out how to get my picture on here. I will have to decide whether the picture will be before BC, or currently with a half inch of hair, or currently with my cute wig.

Thanks so much for the good wishes...same to all of you.
Catherine in Oregon

Hi Catherine
I am new to this completely and on a different continent so hope this works!!!..and would love to hear from others in similar circumstances.
I am also 58 years- diagnosed with Grad 111-Breast cancer in August 2006.... which had spread to lymph glands- 10 positive out of 28 (3.5-4.5 cms) removed...They were unable to identify any cancer in breast even on MRI but surgeon expects its either small and undetected or my ?good immune system eradicated it so no breast removal.. ....My understanding is that you do not have advanced breast cancer...it may still be considered early breast cancer.....the stage and grades are important to note...however.....Metastatic refers to any cancer that has spread...in the true sense of the word,,,,the risk for me is there is a chance of recurrence.. hopefully not so!! .in view of the Grade and size of cancer in my case it is considered stage 11B (early)...so need to look at size of nodes.
I have completed four cycles (three weekly) of AC treatment (adriamycin + Cyclophosphamide) and started Taxotere and Herceptin two weeks ago (and have three more cycles ) and then 25 radiotherapy sessions to superior clavicular area and right breast and then ongoing Herceptin, all being well for a total of 12 months.....So far have been able to work ...probably 75% of normal- but normal for me was 12 hour days running a medico-legal business and so cut back hours especially one week post chemo.... as was hard to see injured/disabled clients then. Interestingly the last treatment was tougher than the A/C regime for me as I had painful joints and felt like spikes in all orifaces....unsure if it is cortisone effect or Taxotere.....fortunately painful joints dissipated after about eight days post chemo but still feel very tired...and am hoping I can manage the remaining chemo better than this last one...it seems to become more managable when you know which medication you can take to assist the side effects..and pace yourself and keep positive.....the chemo is healing hopefully.....I would love to hear if others have had the same experience as me. I also have had the metallic taste only since last chemo and that is unpleasant....any remedies...I brush my teeth with moisterising toothpaste/gels use mouthwashes, biacarb mouth rinses and tried Nexium--the latter probably the best to date.
Keep smiling and enjoy every day!!

[Catherine]

Hi Margi,

Yes we can all get on the same site and communicate and compare notes even Australia to Oregon. I completed all of my chemo in August before my surgery. Chemo was not fun, but I made it. Taxol was tough on me.

Are you having Herceptin along with the chemo? I am only on Herceptin now.
See my profile. I am still trying to navigate this site.

More later, all the best, Catherine

PS I barely work 50% of my former schedule. I love taking time off and being good to myself. I excercise and sleep as much as I can.

Hi Catherine- it's good to hear from you....and yes I am still trying to understand how to navigate around this site also...and understand some of the different words used.
Taxol is different to Taxotere...but similar class of drugs...and I am on Taxotere and yes, started it with Herceptin as an infusion two weeks ago.... I finish Taxotere on 16 February and will continue the Herceptin for the twelve months apparently.
I am just hoping I do not have the same side effects for so long next Friday when have second Taxotere.

Did you find it became worse with Taxol each time?- Accumulative fatigue I guess after all this chemo too.
My neutrophils dropped significantly (0.6) after my surgery to remove lymph glands when I started A/C chemo so I now have neutropenia and have injections of Neulastin to boost the white blood cells in bone marrow twenty four hours after each chemo session.
I see the oncologist just before I have chemo- this week two days before so will discuss my side effects in case my dose needs to be adjusted as had aching joints for 5-7 days, flu type symptoms (I know Herceptin can cause this) for which I take an antihistamine and epigastric discomfort for which I take Nexium as well as the awful metallic taste which has dissipated a bit thankfully.

Did you get any similar symptoms on Taxol? and have they dissipated now that you have finished it?

Fatigue is amazing and you just have to rest and sleep as needed don't you? Thankfully it does not usually hit me until late afternoon or early evening but like you sleep/rest is essential and pacing oneself....you cannot do otherwise and you really get to know your body I think...

And I also know that exercise is the key- the oncologist had advised me to walk to eradicate fatigue and I know when I do something such as walking or heavier gardening feel great and need to do it more......I was weeding bent over for ages recently in very hot summer weather and although it worked up a sweat felt so good afterwards...the key to know this and do it more often. Is Herceptin alone causing you ongoing fatigue? Did you find radiotherapy caused fatigue?

All the best Margi

[tousled1]

Margi,

When I was getting my chemo my blood counts dropped - both red and white cells. I was getting Procrit shots the day of chemo for the red blood cells and Neulasta the day after chemo for the white blood cells. I also had bone/joint pain with the Taxatere. When I was on the Taxatere I received Decadron (steroid) as a pre-med so I attribute a lot of my side effects to that. Chemo does have a cumulative effect but you will get through this.

Thanks for your reply.....yes I think the cortico-steroids that you take pre and post Taxotere for the three days can cause a lot of the problems..as I had this spiking feeling in all orifaces and with joint pain felt Id go crazy if it lasted...but the spiking feeling disappeared after three days..the GP (local doctor) felt it may have been the steroids....I am hopeful it will become less...the consolation is that you hope you are being healed...dont you?..and you have obviously come along way and have similar treatment.
How have you found the Herceptin?...most people say its very tolerable after the chemo.
all the very best Margi

[Adriana Mangus]

Me too am Her2+, ER/PR -. According to studies and clinical trial women who received Herceptin and tested neg. but are Her2+ did as well as those who tested ER/PR + . It's my understanding that it just means that if you are negative you do not benefit by taking HRT . Finally, women who received Herceptin regardless of hormone receptor benefited from it. And that's all it matters to me! Is just too dificult to sort out through all these medical issues.
Now, some of the ladies on this site are genius, am sure you will receive tons of useful information from them.

Hugs and best of luck to you.

yes hopefully we can all beat it....thanks for the welcome and all the very best with your journey to conquer it completely
Margi

[rinaina]

Hi Catherine, I was as confused as you are in the beginning but that is the beauty of this site. You will find just about all you need here. I too am er/pr negative, node negative, stage I. Feel free to contact me by email if you ever need to talk.

[Brenda_D]

I am also ER- (0) PR- (0) and Her2 + (3)
I'm just beginning my journey into treatment.

[Wendywins]

Those who get to have herceptin should take heart! It sounds like the best treatment.
Taxol turned out to be the worst in terms of side effects (ie bad effects) on me...and so Herceptin sounds soooo much easier to take and recover from.

For taxol tips, check out this site and others. It and it appears that the carrying agent for taxol ( rather than the taxol itself )may be harder on folks in terms of joint pain, burning palms/soles, puffy feet, neuropathy and the shooting pains etc.. Not everyone gets these effects but those who do need to let their doctor know so that possibly the dosage can be reduced or alternative formulations if any considered , I think. Sounds like some get this kind of reaction from taxotere?as well.

Longterm affects from taxol on joint pain, feet etc can be alleviated but many oncology docs do not seem to have a clue as to how so sites like this are great to find ways to cope , compensate, alleviate. I had to do a lot of hunting to find out that I was not "the only one" who had these affects . Doctors are apparently assured by drug companies that the adverse reactions are extremely rare and thus assure patients that the affects are rare and if present will disappear quickly and are flummoxed in cases where 90 days later or more, they are still present. There are simple things one can do for oneself...which aid greatly in comfort and recovery. One is simply changing to "wide shoes" with minimum sides ...like sandals or earth shoes even if one has never worn them before... Trust me, its like a miracle for those who have been in foot pain from taxol. Life is great when you can WALK again!!
Warm weather and warm water exercise also helps joints. I personally prescribe a warm dry climate and swimming in warm water! If you can, you owe it to yourself.

[gracelmj]

Is this site only for Cancer survivors? My mom was diangosis with Breast Cancer alittle over 5 years ago and now resently found 4 cm mass in left lower lobe of lung and 2 cm mass in adreanal gland. She had a PET scan done, but no results yet. Does anyone know if Radiologist "impressions" holds much value? Or do we need for Pet Scan results to come back before knowing for sure if she has cancer. Based on all the finding, a nurse said "It doesn't look good, we need to pray it's not 4th Stage". That sounds like "cancer for sure". I have the Finding Report if anyone knows how to discifer it.

Worried, Dazed and Confused
Linda
Fairfax, VA

[tousled1]

Linda,

This website is for cancer survivors and their caregivers. Radiologists are trained to distinguish cancer masses from benign masses. The best test to check for metastic cancer is a PET/CT scan. My lung mets were found by a routine CT scan and my brain met by a routine brain scan. Cancer is a very scary disease and is very unpredictable. When does your mother have a follow up appointment to discuss the results of the PET scan? the worst part of this dreadful disease is waiting for test results. I'll keep your mother in my prayers. And if it is Stage IV there are many treatment options available. Don't give up.

[Catherine]

Linda,

I am not sure who is in charge of your mother's treatment. My radiologist was the least helpful, and had a bad, bed-sider manner. He was a know it all and refused to share the truth.

I received the best information and referrals from my oncologist and my surgeons. I was scheduled for all the pt scans, cat scans, mris and pelvic ultra sounds.....etc. These doctors wanted to know what was going on in my body once I FOUND THE TUMORS IN MY BREAST. Make sure you are working with good people. Do not get too scared. There are wonderful options and treatments for all of us.

All the best, CAtherine