Relative with Breast cancer
 

Hi there,

Relative of mine diagnosed in June Her2+ and I think ER and PR+. The surgeon did a lumpectomy plus SNB. He said they found very minimal traces in 1 lymps node - from research do you think this means micromets?

She started chemo at the start of this month, will begin Herceptin after 4x of AC whilst on Taxol.

My question is she was given a CT scan yesterday. She believes this is before she starts Herceptin i.e. they want a good picture of the organs before Herceptin beings to look for an damage that will occur. She is also booked to have a MUGA later this month.

The surgeon, oncologist and radiology doc have all said that the operation was a success, that the margins were clear 1.3cm tumour was what she had and that anything now is preventative.

As she's had a CT scan we are worried it might have spread elsewhere. Would the doctors have known this from the blood tests they did. No one ever mentioned mets to her but she is slightly concerned.

Also at the time she thougth they said she was stage 3 but looking online I don't think she can be...1.3cm 1 trace in nodes to me puts her at 2. Perhaps they said Grade 3 or else maybe the HER2 is+++.

So much information online. She has appointment with oncologist later in month to see how she is getting on with chemo, but it's a bit of a wait. She is petrified of mets.

Re: Relative with Breast cancer
 

Hello Irish,
I believe the standard treatment with any lymph node involvement would include chemo and radiation and as she is HER2+ would include Herceptin and then if she is ER+ some sort of AI (aromatase inhibitor), if she's put on one, she should try taking it at night. Good news that the margins are clean. Not sure how the grading goes but always best to be aggressive with cancer. Sounds like she's in good hands. Blood tests I believe can show a problem but are generally taken every so many months to be sure there isn't a constant uptick or that the drugs are effecting an organ but they are not a way to rule out cancer. With Herceptin, she'll need to have a heart test (a heart sonogram) every 3 months to check if it is effecting the heart. Herceptin is a miracle drug.
This is a great site with very knowledgeable people on it so you will find good advice, much better than mine.
good luck to her. Each year things get better. I am sure the diagnosis was a shock to her and all of her friends but breast cancer is one of the best treated and known. Remember if she is ever concerned, she should get a second opinion.
They say exercise is good, avoiding dairy and enjoy life and be with friends. She'll be very tired on chemo. Get a bicarbonate gargle from the pharmacy to avoid "mushrooms" in the mouth and good skin cream. There are also hardening nail polishes made for chemo patients if she finds her nails breaking too easily. Mine was called Evonail, it's expensive but it works.
health and happiness
sarah

Re: Relative with Breast cancer
 

Sarah thanks for your reply.

I suppose we are concerned at how early she's had a CT scan. I presume if they suspected a spread thy would have said it.

Is the fact that margins are clear an indicator that it is less likely to spread?

Unlike doctors in America, from my experience on reading message boards, information is only given on a need to know basis

Re: Relative with Breast cancer
 

Hi irishrelative, they did the scan because she had lymph node involvement. It is standard procedure here in the US, and I would imagine where you are, too ... to have a scan with ANY node involvement, no matter how small, OR if the tumor is over a certain size. That being said, I had no scans because I had no positive nodes and the tumors were under a certain size.

Clear margins are good ... although unfortunately, when it comes to breast cancer, there are no guarantees. But it is better than not getting clear margins!

Mets are always a concern ... there is no other way to say it. But it sounds like she has a good treatment plan in place, and like Sarah said, Herceptin is a game changer for HER2 +++ breast cancer, and the prognosis is much better than it used to be.

Have her doctors mentioned anything about Perjeta? It is another relatively new drug that is given along with Herceptin for Stage II breast cancer, again lymph node involvement or tumor over a certain size. Another treatment I did not qualify for.

Keep us posted, and best of luck!

Carol Ann

Re: Relative with Breast cancer
 

Thank you.

Doctor described the tumour as small 1.3cm as he had to put something in - a piece of wire - to be able to find it during the procedure.

We were so delighted when they said they got all the cancer, but not we are worrying.

Re: Relative with Breast cancer
 

Hello Irish,
Like Carol Ann, I've heard great things about adding Perjeta to the mix so see if it's possible to add in. Also since she's had lymph nodes removed, I assume she's getting some kind of physical therapy for her arm?
Good that she has you looking out for her.
hugs
sarah

Re: Relative with Breast cancer
 

Thanks for mentioning the PT, Sarah ... yes she should be evaluated for possible lymphedema, she's at risk because of the node removal.

See my signature ... I am doing fine wearing the sleeves on both arms every day, I don't need the gloves, but it was crucial that I got started on the therapy when I first noticed swelling, for me it started across my knuckles in my left arm, the side I had the most nodes removed on.

Carol Ann

Re: Relative with Breast cancer
 

Hi there,

She isn't having any physical therapy, but she appears to be fine. No swelling. Her operation was early July and is healing well.

Docs told her her hair would fall out within 7 to 10 days of her first round of chemo which was 2.5 weeks ago. This hasn't happened yet.

It is awful waiting for it to happen. She doesn't want it happening, but yet as it is going to happen, she just wants to get it over with.

Re: Relative with Breast cancer
 

Typically, a sentinel node biopsy (SNB) only removes 1-4 nodes, leaving the rest. Lymphedema is very much minimalized, which is why most docs do an SNB instead of a full dissection. If there are mets to the lymph nodes, they may suggest radiation to the nodes which does pretty much the same as a full dissection when it comes to lymphedema. That's what happened to me - 1 out of 4 nodes were positive. I only wear a sleeve when I fly (on a plane, of course!) but never give blood or get blood pressure measured on that arm

My hair fell out 4 days before my 2nd chemo. Everyone is different..

Good luck to your relative

Janis

Re: Relative with Breast cancer
 

Yes. She is doing fine and movement of arm is back to normal, though she still has scarring.

The doctor said traces found in one lymph node I don't know if that means full involvement or micro mets.

I am surprised they didn't do CT scan at diagnosis, for staging, but are now doing it once chemo has started? I presumed it would have been done earlier on in the procss.

Re: Relative with Breast cancer
 

Hi, Here in Australia, most of us get a bone scan and a CT scan of torso before any surgery to help them get the staging right. I had no node involvement and my IDC was 2.2cm. They do these tests to see if there are any visible tumors in liver, lungs, bone, but generally can only measure those over .5 to 1cm. So they generally cannot know for sure, but they can see if the disease is systemic rather than just in the breast, in which case they may provide different treatment options. But she's got it at a really good time because the treatment options are so good these days.

A problem with HER2+ cancers is that they are aggressive and fast growing and prone to shed cells even before surgery, that can spread through the body in an innocent form and find a suitable niche, and grow into new distant cancers. So the primary tumour has ofter become Grade 3 before it is diagnosed, (i.e. very aggressive and fast growing and prone to metastasise).

However, we are very lucky that some very clever scientists put their all into developing a way to effectively treat HER2+ cancers and stop them spreading and often(it seems)even to cure them, developing the range of treatments that began with Herceptin. And even if the cancer does metastasise, there are good ongoing treatments that often seem to allow a person to live out a full life despite having breast cancer as a chronic illness. My oncologist said to me that 10 years ago, without treatment after surgery, I had a 45%chance the cancer would be back within 5 years in a form that would almost certainly kill me. Now, with the TCH treatment, I have about 8% chance it will be back within 5 years, and then there is a good chance it will become a permanent fixture not a death sentence. So do not despair.

If she has any node involvement, even "micromets" I think they call it Stage 3. Be aware that whether or not her cancer is found to have entered the lymph system, and whether or not all the original tumour was completely removed by surgery, this is a cancer that does tend to seed and spread and to try to grow back elsewhere in the body, mostly within about 3-5 years. So this is why the chemo and radiotherapy are so very important: they will do a good job of mopping up any tiny mets that start before or during her treatment period, which is the time when the risk is probably highest. It is scary to live with this reality, of not knowing for sure whether you still have any seed cancers somewhere that may start up. Learning to monitor vigilantly without living a life of fear is a skill. Learning to leave death and dying until it is really happening, which could be at the end of a very long life, is hard to do after confronting the truth of having a potentially fatal disease.

So value her and love her, and know she has a pretty good chance of having a good long life if she is able to find the courage to make it through chemo and radiotherapy and hormone treatment to control the ER+ environment. Which I am sure she will.
What relation is she to you?
best wishes
Jessica

Re: Relative with Breast cancer
 

Jessica's beautiful, honest post above says it all.

Your relative is lucky to have you in her life!

Carol Ann

Re: Relative with Breast cancer
 

Unlikely to experience lymphadema from Sentinel Node Biopsy. In the olden days, I had about 20 nodes removed, and 20 years later I don't have any problems, including I've flown extensively without a sleeve - I wouldn't add that to the worry list.

Re-micro mets or not, you will never know but your relative is doing treatment which is appropriate for highest survival odds. Sounds like the medical team is doing the correct things, the scan is good for a baseline and to make sure cancer is not elsewhere prior to treatment.

This is a good resource for information, so welcome, although sorry you have to be here!

Re: Relative with Breast cancer
 

Sorry, I saw "physical therapy" for the arm and just thought lymphedema because of what I went through ... and I actually never needed any PT for either arm!

Carol Ann

Re: Relative with Breast cancer
 

Hi,

Its very usual here in Ireland to have a Mugga and bone scan before chemo and is routinely done, I had both tests ten years ago myself and its still the norm here.

Re: Relative with Breast cancer
 

Thanks for that Tricia. She does second round of chemo next week.

I think she is going for an ecg next week and the scan was last week. No mention of bone scan yet, just CT - don't know what the significance/relevance of that is.

Re: Relative with Breast cancer
 

Thanks for that Tricia. She does second round of chemo next week.

I think she is going for an ecg next week and the scan was last week. No mention of bone scan yet, just CT - don't know what the significance/relevance of that is.

Re: Relative with Breast cancer
 

I was dx ten years ago so it's possible they've switched to a CT scan now maybe? Try not to read anything too much into it as Dr's can have us worried sick without realizing it.

Re: Relative with Breast cancer
 

Hi
Just reading your posts. I had CT, Bone Scan & Echo before starting treatment.This was after Lumpectomy. In fact treatment was delayed a few weeks because Hospital staff had forgotten to book CT!!
(Did not go down well with Consultant Oncologist particularly as I had started steroids in prep for chemo next day!!)
I was told that scans required before starting treatment and this was standard.
Juls

Re: Relative with Breast cancer
 

She had a CT scan, no mention of a bone scan yet and will get the tests before starting on Herceptin too.

The docs kept saying treatment preventative, but how can they say that for sure before they do scan?

We are dealing with the cancer diagnosis as they reassured us it's gone, but now waiting for the scan results, the what if? question is creeping in