please help! is my cancer worse than anyone else's because it has never went away?
 

Hello all,
I am sorry if this seems an unusual thing to ask but after numerous trips and hours of questioning the medical staff at the hospital I attend they say perhaps all chemotherapy and radiotherapy I have had possibly did not work and my cancer has always remained in my body from when I was diagnosed until now which has been 2 years and 3 months. Does this mean my cancer will never go away?
I am now on tdm1/kadcycla and I pray that it is working.
I am sick with worry and do not know what to do.
Please give me some advice.
Thank you for reading x

Re: please help! is my cancer worse than anyone else's because it has never went away
 

This is a scary time for you. You are still trying to beat down the beast and now you are waiting for your body scans. You thought you were giving your cancer a one two punch and then your doctors ponder whether your prior treatments were effective. You feel like you are on a roller coaster, I am sure. And I am sure you must be thinking - I don’t belong to this club….UGH!!!
Here are some things you can do.
Keep educating yourself. Knowledge is power, ignorance is not an excuse. Have you looked into clinical trials?
Make sure you are eating healthfully.
Get your spiritual house in order, it helps to be able to meditate or pray - depending on your spiritual persuasion - and simply find peace during these stressful times.
Surround yourself with people who love and support you. You are young energetic and worthy of great love.
Hang in there. Be an active questioning team player in your care.
And don’t forget you always have your sisters here to come to with questions.
Peace be with you sweet angel. Please keep us posted on your scans.
Love and Hugs,
Kim (from CT)

Re: please help! is my cancer worse than anyone else's because it has never went away
 

Dear Kim, thank you so much for your beautiful message. I feel I was doing all the right things during the first and second chemo, eating well, relaxing. Yoga, arts and crafts but all those good things didn't work and the cancer remained or came back.
I feel I am frightened that my oncologist might tell me something I do not want to hear.
I am frightened that my life is over.
My dream right now would be to get pregnant and give my husband a baby.
I really appreciate your kind words x

Re: please help! is my cancer worse than anyone else's because it has never went away
 

K1982,

I am sorry that you progressed with the treatments you had.

Have you started to look at clinical trials? You can go to http://www.clinicaltrials.gov/

Also:

https://www.breastcancertrials.org/bct_nation/home.seam

Have you been tested for BRCA mutations?

It is too soon to toss in the towel! Let us know what the scan results are please. We are wishing you good results with TDM1. If I remember correctly it took time to work for others.

Re: please help! is my cancer worse than anyone else's because it has never went away
 

This all must be such a scary experience. I can understand the fear and the panicky feeling. I know you have dreams about your future, and those may or may not come to be. For now, all you can do is get the best treatment available, and it seems like that is what you are getting. Over the ten years I've been on this board and on another support forum, I've read about several women who tried treatment after treatment until they found the one that worked for them and had them "dancing with NED", as we call a diagnosis of No Evidence of Disease. Also, I know even more women who are stable on a treatment for years, some even for over a decade and counting. They were at the point where you are now until they found their "Magic Bullet".

So even though it is very tough right now, it doesn't mean there is no hope. No one can predict how your cancer will develop. We can just do everything we can to stop it. And there is still a lot we can do. Like someone else wrote: educate yourself. Ask, read, and process all the info you can get. It may give you a better idea of your options.

And remember that those who do well don't write as much on these boards. They are moving on, living a full life, having a good time. Only some of us keep coming back here.
So what you read on these pages is mainly stuff about people who are not (yet) doing so well.

Try to take a deep breath, and distract yourself as much as possible. Ask your medical team to explain things and ask for a number you can call when you are scared about symptoms. And like someone else said: pray, meditate, do breathing excercises. They help.

I know this is tough, but it can be done. It just takes a lot of practice. Do you have people around you who support you? It's time to reach out to them now. And if you don't, can we help you find some?

Hang in there!

Love

Jacqueline

Re: please help! is my cancer worse than anyone else's because it has never went away
 

my wife is doing great on t dm-1. she was in big trouble before she got it. at her 1st scan ( after 3-4 doses at 3.6 )she had some shrinkage of vsisble liver tumors - from 7 down to 4. had to reduce dose to 3.0 because of low platelets, but still saw slow, steady shrinkage to NED by the end of the 1st yr. on t dm-1. she is still ned ( no evidence of disease ) over 3 yrs later . now on maintenance dose of 2.7 monthly.
here is wishing you eve n better initial results.

Re: please help! is my cancer worse than anyone else's because it has never went away
 

I just want to say thank you to everyone. All your replies made me cry with happiness. It's good to know that there are people here who know what I am going through, people who understand me and also very inspiring to hear positive stories and tips on how I can help myself.
Thank you so much x X

Re: please help! is my cancer worse than anyone else's because it has never went away
 

Dear K,

I echo what the others said. I just want to add my encouragement and a few other thoughts.

One thing to realize about cancer is that each of us has a specific kind that's personal. Cancer is a person's own cells getting out of whack. So although we can learn things from what has worked for other people, every person is different.

Technically, once cancer spreads (metastasizes) from the original tumor to bones, liver, etc. then no one expects it ever to go away, so you're right about that. It doesn't mean yours is worse than "everybody else's." You have lots of company in this club no one wants to join. For example, here's an excellent organization that focuses on metastatic breast cancer: http://mbcn.org/

Although it's not curable, it's treatable. Some people live a long time after a diagnosis of metastatic breast cancer.

The best thing you can do for yourself is decide not to worry about anything until you have to. Learn to stay in the now. You're alive now. You have today.

Waiting for scan results is the worst. I'm in that boat myself today. I had a scan on Thursday, and I'll see my oncologist Monday. I try not to think about it, but thoughts intrude anyway.

I tell myself that scans are just information. We need to know what's up, so we can decide what to do next.

TDM-1 caused too many side effects for me to stay on it, plus there were indications of progression. But it works like magic for some people. And don't worry. There are lots more medications available, and more are being developed all the time. Hang in there. Let us know what you find out from your scan.

Re: please help! is my cancer worse than anyone else's because it has never went away
 

Actually your cancer is MUCH better than most

Your cancer has remained Loco-regional rather than distantly metastatic

Almost everyone who dies of breast cancer dies of distant metastasis rather than local or locoregional disease.

It appears your breast cancer likes to travel to lymph nodes which drain the breast via spread via the lymph system rather than than distant metastasis in bone, liver, lung, brain, adrenal or leptomeninges via the normal circulatory system which consists of arteries, veins and capillaries.

You may also consider yourself lucky that the areas your tumor seems to have spread to are easily accessible for biopsy so that it becomes clear quickly if treatment is working or not, so that other treatments might be substituted which may prove more effective. Tumors may change when they spread and it is possible that these nodes are her2 negative (in which case herceptin won't necessarily help) or their ER status may have changed. Again, you are lucky as your tumors seem to pop up in easily visible areas and areas easy to biopsy

From what I have learned in my reading and at conferences, these tumors utilize different strategies/pathways to spread to the lymph nodes than via the circulation.

You seem to have what they call LABC (locally advanced breast cancer) , more correctly LRABC (loco-regionally advanced breast cancer rather than distantly metastatic breast cancer. Again, stats seem usually much better for LABC than MBC.

Perhaps one of your doctors will send the tumor and representative nodal metastasis specimens for genetic/pathway testing to find the best combination of treatments. Not standard of care, but there seem to be more trials involving such testing and in light of the fact that various treatments have not yet proved sufficient perhaps more information on what drives your tumor might help pick your next therapy choice(s)

Chin up-- many reasons to consider yourself lucky!

PS I hope I posted this on the right thread--when I started the post I saw clinical information which perhaps has now been deleted, or perhaps I have posted on the wrong thread. The clinical info I saw showed no evidence of distal mets, only "spread" to the neck.

If I have misposted, please forgive me.

Re: please help! is my cancer worse than anyone else's because it has never went away
 

Hi lani, I was wondering are you in the medical profession?

Re: please help! is my cancer worse than anyone else's because it has never went away
 

Once again Lani comes through with a comforting truck load of facts. All relevant points and I hope K1982 - maybe you are starting to feel a bit better? Either way - I am sending love and light directly to you and hope to hear soon about a dance with NED
XO