Is this really what to expect?

tmf1968

Hello, and I am new to this site, but have not seen an answer to this question, my mom's dx was made 11/06 and lumpectomy on 11/23 with SNB neg. Dr. told us that he was 95% sure he had removed all cancer, clear margins. My mom was hoping to avoid chemo due to an EXTREME fear of needles. Met with the Onc 2 days ago and was given a plan of 4 chemo, 1 year herceptin, 5 year arimidex and radiation. VERY frighening to her but was told that if she agrees to all this she still has a 25% chance of recurrance at any time in the future. If she were to refuse chemo, or parts of treatment the rate of recurrance goes up to 50%. That was a real blow. Not expecting that after you hear about the 97% 10 year survival rate as we had just heared from the biopsy Dr. Had not realized the numbers would be so high. If anyone else had similar Dx and was advised, please let me know if this sounds right. ER 95%+/PR-/HER2++. 2.4 cm tumor IDC in right breast. Thank you to everyone here, what a wonderful website to have come across.

hopefortomorrow

Hi Tm-

I asked the same question here when I signed on. Yes, to me the method of treatment for her dx sounds right. I am sure others here will have input for you. It is scary to hear these things, but I can really say this is a wonderful site for information and support. These ladies are wonderful!

Cathy

Lowrider54

Chemo is quite typical after a lumpectomy and clear margins.  Arimidex is preventative at early stages and 5 years is the norm.  I can't say about the herceptin as I am HER2-.  The size of the tumor is a bit large and the whole idea is to prevent a recurrence.  Survival and recurrence are 2 different animals.  I did the chemo (CMF), Tamoxifin, declined radiation and got 10 1/2 wonderful cancer free years.  That is my story and everyone is different.  I now have mets to the bone only and am treating with Faslodex and Aredia - no chemo yet. 

4 rounds of chemo can be pretty easy to get through depending on how your mom reacts and the side effects but there are all sorts of thing to counter many of them. I did 8 months of a pretty tough cocktail - every week with one week off in the 4 week cycle. 

Looking at statistics is only a guide to help the docs figure what is the best course of action.  Survival - meaning she will be living in 10 years is a very good bet - likely, well beyond that so don't let that be frightening.  The chances of recurrence are always there.  A stage 0, tiny turmor, clear margins - the chance of a recurrence are almost 0% but it still can happen.  The higher the staging, the percentages of recurrence rise but since there are no hard and fast guarantees - it again, is only a guide - so, the docs do everything they can at an early stage to be certain to kill any wandering cells to lessen the chances of a recurrence. 

Many a stage iv which is when one has a distant recurrence are living with cancer - we are surviving.  The statistics you have been given are correct - but we are not statistics.  And just keep in mind, survival statistics are different than the statistics related to the chance of recurrence.  Like I said, they are two different animals. 

It is scarey...I wish your mom success in the treatment and don't let the docs scare her into doing something she isn't comfortable about.  Get a second opinion if necessary so you and she are comfortable with the plan.

Cyber hugs to you both...LowRider

JanetinVirginia

tmf - you should ask for a copy of pathology report to confirm whether margins were clear.  Also, many times a port is installed which is used to inject the chemo drugs instead of an IV in veins - so that may help in terms of your mom's fear of needles.  Also, she may want to consider mastectomy & skip the radiation (depending upon where her tumor was - I assume not on the chest wall).   A 2nd opinion with a breast surgeon (one who ONLY does breast surgeries) is ALWAYS a good idea at a national cancer center.  Google national cancer center and you can find a list in your area.  My best to you & your mom - stay strong.

lago

Those stats seem a bit pessimistic if she does all the treatment. I am stage IIB and getting 6 chemo treatments,1 year herceptin, 5 year arimidex and no radiation and I was told 16% chance (although 2% of those16% would die of other causes). I'm 49. I did a BMX but that shouldn't effect survival rates.

But it depends on your mom's age. If she is 70 then of course there are more women dieing of other things in 10 years besides cancer. So take into consideration that maybe 10+% of those would have passed due to other causes.

Beesie

tmf,

My guess is that you are seeing such a big difference between what the biopsy Dr. said and what the oncologist said because, in the interim, it was determined that your mother's cancer is HER2+.  That's the factor here that changes the prognosis and makes chemo & Herceptin necessary (from a medical standpoint; like all treatments, it's a personal choice).  Still, I agree with lago that the prognosis your mother was given, assuming that she takes all the treatments, does seem overly pessimistic.

I also agree with the suggestion that your mother get a 2nd opinion. The treatment recommendation is unlike to change much, but she may get different numbers in terms of risk levels, with and without chemo.  And although I can't vouch for the accuracy, a lot of women here have used the following website, which allows you to input the information about your mother's diagnosis and see how much impact each treatment would have for an average group of 100 women with the same diagnosis:  http://www.lifemath.net/cancer/breastcancer/therapy/index.php

imatthew

hi, my wife's oncologist told us the same thing (50% without, 25% with), but everything else I've read said the recurrence rate was lower than that.  I've been to afraid to ask him about it in more detail in her presence.  We looked at the survival charts at cancermath.net for her situation, and it showed an 83% 15 year survival rate, but that site doesn't include herceptin's impact on HER2+ survival rates.  FWIW, we had a mammaprint test as well after her mastectomy, but it turned out to be pretty much useless as HER2+ almost always comes back with a high chance of recurrence (above 30%).

WRT to the needle, given she'll need a year of treatment she will almost certainly get a port.  My wife had her first chemo through the port and didn't even realize the nurse was inserting a needle into it.  She didn't feel it at all during the entire treatment. 

tmf1968

Thank you very much for your kind replies. I absolutely love this website to have as a valuable resource to turn to for support and advice. I wish each of you a wonderful Christmas (holiday) season and look forward to keeping in touch on these forums.

revkat

Some self-hypnosis/deep relaxation therapy could help your mom with her needle phobia. I really hate needles too, but using the relaxation techniques I learned for natural childbirth does help and my sister assures me if I went to her hypnotist things would be even better. I was going to go before I started chemo, but time just ran out.

tmf1968

Thanks for the recommendation. At the beginning of this whole diagnosis, my mom was really considering not even telling anyone about the cancer because the thought of 'letting it take its course' was almost easier than the thought of all of what was to come with the treatments. She did tell me that if she was going to go through 'with this' she would need counseling to help her with her fear. We found a therapist that does 'desensitization therapy' and she had her first appt. the day before her lumpectomy. LONG way to go, but I'm thrilled with the progress she has made so far. She was always a fighter before, but this situation is proving to be her most difficult challenge by far.

Alyad

Have your mom's doctors said anything about her getting a port- its a device they implant under the skin on the front of your shoulder- they still use a needle to acess it, but you can easily look away while they do it and then they put a bandage over it while you are receiving chemo- I'm not very found of IVs in my arm, I'm not that scared of needles, but I find I can't stand to look at a needle going into my arm. If she can get a port, they can use it for blood draws as well- tho you might have to make it known - talk to the doctor about her phobia- my center wouldn't use the port for blood draws bc it requires an RN to use it and the people doing the blood draws are only techs- but there were people I saw who got blood draws out of their ports.

Also, see if you can get your mom some anti-anxiety meds to take before treatments- they help a lot.