Breast lumps

OK, I found her notes on our meeting before the second lumpo.
I had a tiny invasive tumor, but I also had some dcis and two other foci. So, she called the tumor a stage I, but the whole thing a stage II. (which set the scene for going in again.)

Both the ER and Her2 were neg. (I remember her saying that wasn't for sure as the tumor was so small.)
She did give me statistics at the time. Re the actual CA tumor, survival rate with treatment, 98%; and then with discussions about radiation re the breast, numbers re chances of recurrence, 1% a year, chance of new primary tumor, 25% lifetime, chance of metastasis, less than 5%.

In the second lumpo, the sentinal node was neg, and all specimens were neg.

Interesting to reread all that.

Oh, and on the notes, the tumor was 0.4 cm.
I also remember further talk, but none of that, like re tamoxifen, written at the time; plenty of time, re if I had further questions, and email her if I thought of anything.

Thanks, osso for sharing all of that info. I'm glad you aren't HER2 positive! That's good news.

I am weakly ER positive and will find out more tomorrow from the onc.

Martybarker, also thank you for info on the ports. I might be asking for more info after tomorrow.

Reyn !!! I am so glad that it was just a benign cyst. I can imagine how relieved you both are.

Rockhead - glad to know you're still around ~ thanks for stopping by to say hi.

I'm off to bed. I was up until 3 AM researching this a.m. and still don't know much about my type of breast ca, not even any stats on survival....

will post more asap. Is there life before/after breast cancer? We're beginning to think not.....
Bathy
Dianne

Push your docs for stats, Bath. Well, in my opinion. Maybe I shouldn't be so glib with advice. I've an info bias.

Yes, remember my friend who had a double mastectomy and didn't tell anyone in something like 1984? She was fine until 2004, had an interesting life, and that next thing wasn't bc.
If she had chemo in '84, it must've been much less worked out than they have now.

Oh, and the artist who also does dressage.. who had stage 4 and is fine a decade later.

Dianne -- good that you're getting all this info. I find information is power. Very comforting to know, rather than be in the dark.

Reyn -- last time I had a mammogram, the technician said another word for fibrocystic breast disease (e. g. breasts with cysts in them) is, "normal breasts". As in, cysts are pretty common. Good that it's good news.

How did it go today, Dianne..... did you manage to get answers to your questions from the oncologist?



oh yes hun..... you're on your way, but it's quite a journey. Take all the restful moments you can and believe that there is a good future ahead for you all. x

Well, I saw Dr. Moreau at the House of Pain today (my oncologist).

He said that without chemo I have a 30% chance of dying within the next 10 years. If I do chemo my chances improve by 13% over the same 10 year period. Then I have to take the risks of chemo which can cause heart damage and a host of other problems possibly later in life, such as leukemia - and decide if I want to take the chance and do nothing. Because I have negative lymph nodes, a good thing, I don't have to have what he called 'dose dense' chemo - not as aggressive as it could have been, but no cake walk either.

I have been reading about a test called Oncotype DX which sounds like something he should have proposed, but when I mentioned it he sloughed it off....saying something about he didn't have that test. Does Canada not have this test? It determines whether or not a person would even benefit from chemo and what their chances of a recurrence would be. The cost is $3400 and I'll gladly pay that if I have to.

Thanks for your uplifting words. This is a horrible time for sure.
Dianne

Hi Dianne

Quietly following your progress, unfortunately I cannot offer you any practical advice, but want you to know I'm thinking of you and sending heaps of vibes and best wishes your way. Try to think clearly and decide with your hubby which is the best course of action for you. I can see you're one hell of a fighter and will get through this difficult period in your life. Take care my friend.

Hi dianne,

You've just had a double mastectomy but are apparently balking at the idea of chemo. Maybe if you write out your thoughts of why you went ahead with surgery and why you are balking at chemo it will become more clear to you. There's obviously a lot more to each of these decisions than the data. Data only gets you so far down the decision path. What else do you have running inside your head that's making you waver?

Oncotype DX is still in trial. Generally tests and meds take longer to get through trialing in Canada than in the U.S. Different protocols are required.

TAILORx (Trial Assigning IndividuaLized Options for Treatment): Questions and Answers



perhaps you could look into who is trialing locally and find out if you qualify

Hi there, Dutchy!

Thanks for your kind thoughts. We're figuring it all out. It's just a hell of a lot of info to process in a short time. When I had the aneurysm, I had 7 months to decide if I wanted surgery or not. With this, I feel pressured to make a decision yet again. I'm sure as we go along and get more informed about our options we'll make the right decision. Or, I will. No one else can do that except me.

I hope your weather is good there - almost spring, right?

Dianne

Well, let's see if I can explain. The mastectomy was preferred over having to worry about future lumps/tumors/mammograms. It is not uncommon to develop breast cancer in the opposite breast, so I decided to get it over with rather than possibly face another surgery in the near future.

Also, I don't have to have radiation because I had the mastectomies. I can get implants at some date and probably have better looking boobs than I had originally . I'm not making light of my decision. It was difficult and I cried plenty about it. But I know it was the right one for me.

The chemo is more arbitrary. I have read a lot of Ralph Moss, PhD, online, who writes about cancer research. He seems to think there is way too much corruption in the drug industry, and that a lot of drugs don't cure cancer at all, and many drugs aren't even proven or safe. He's written many books and is quite interesting. For example, take Herceptin, one of the drugs that I might be taking. It got pushed through because of public pressure but the medical field doesn't really know what the outcome of taking Herceptin will be for HER2 positive women, like me, in 10, 15, 20 years. It had been used for women who were Stage IV breast cancer and has been on the market since 1999. Basically, I'm taking drugs that were originally the mustard gas used in WWI. I have to almost destroy my immune system, possibly cause a secondary illness, and I only get a 78% chance of no recurrence in 10 years using chemo. I have a computed 64.9% chance of no cancer recurring in 10 years if I have NO chemo. There is no guarantee that all the cancer will be killed. There is no way to tell if I am cancer free at this moment, which by all the tests, I am. But there's that one little possible cancer cell that might be hiding somewhere in my body that forces me to go through this absolute hell. It seems ridiculous that in the 21st century, people still have to go through whether or not they need chemo. With all the money poured into cancer research there should be no cancer nowadays. However, it's on the rise. There are tests out there (Oncotype DX and others) that determine if some people would benefit by chemo, but I don't qualify. And many are still in the trial phase. One treatment of Herceptin costs somewhere around $48,000!!! Where is the incentive to cure cancer here?

Losing breasts isn't great, but it's not the worst thing in the world. I'm past child bearing age. The surgery wasn't that painful. I'm back to hiking and doing what I like best. I feel great. The chemo will take over a year of my life, make me sick very frequently, and not give me any guarantees but a paltry 13% chance, based on computer data.

So, JPB, that's pretty much what is causing me to wait and have a second opinion. There are too many unknowns. Besides, I had a cerebral aneurysm repaired over two years ago so not much scares me anymore. I just want to make the right decision and I feel there is too much going on in the drug industry to get a straight answer. I'm checking out taking antioxidants during chemo. Problem here is, the people who push vitamins/supplements have their angle, and the people who push chemo have theirs. It's all about $$$. Here's an example of how screwed up medical opinion is: my oncologist said that during treatment I should not take Vitamin C or E. However, I eat foods rich in both of these vitamins and I also eat lots of antioxidants. Does the medical field advocate eating at McDonald's while on chemo?

Well, that's pretty much why I waver. If I could look at some unbiased info that would be great. And thanks for asking JPB, really. You helped me figure out why I'm dragging my feet.

Dianne
Bathy

Hi martybarker,

I do have a question for you, and thanks for offering to help with questions about ports. My onc is talking about putting in a PICT (is that the way to spell it?) line, which would be in the brachial artery inside the elbow. The tiny tube is fed into the artery to some place, not sure where it ends. Sounds fun. Can you explain the procedure? He would rather do that than the one that goes into the chest. How on earth do I bend my elbow with that thing in there? Any tips on keeping it clean so it doesn't get infected? Are these things painful for months afterward? Tell me the truth, now!
Thanks,
Bathy
Dianne

Dang, marty! I was paging through the messages here and saw your post about the ports. I'm sorry I initially missed it, so disregard my post asking for info about it....unless there is something different about the Pict line which I know nada about.
Dianne
Bathy

Report via today's google news re vitamin C and chemotherapy --

http://www.washingtonpost.com/wp-dyn/content/article/2008/10/01/AR2008100101267.html

Hi, I've been away for a while and didn't see this until now. A PICC line is a peripherally inserted central catheter. This is actually a venous catheter. It enters the skin and into the brachial vein just above the elbow. Placing the catheter here makes it easier to bend the elbow. A PICC can stay in for up to 6 months then the risk of infection is high and they should be replaced. If your treatment is longer term then a more permenant catheter would be ideal. This could be a port(we've seen patients come in for removals after 4 years--mostly because they just leave it in for blood draws after chemo is done) or a groshong catheter which is pretty much the same as a chest port only it exits the skin rather than having an implanted port. These are longer term than a PICC because a portion of the catheter is tunnelled under the skin.

The disadvantage of a PICC or Groshong catheter though is that you cannot submerge them in water, they could possibley get tangled in clothing if you're not careful. I would think that your onc would prefer one of these because they are shorter term and less expensive and less invasive than the port.

To answer the painful question---no they should cause you much discomfort other than having something extra hanging out of you.

Interesting article, ossobuco. The jury's out on whether it's ok or not. I hear that supplements are the problem because of the way they are synthesized but eating, say, an orange a day isn't a problem.

If anyone is interested there are some great articles on "Edible Healing" in the Prevention magazine at prevention.com written by a doctor who has cancer.

Bathy

Ouch.

Thanks for the explanation - I understand now why he wants to do a PICC line. What I can't understand is what holds the thing in there - the catheter goes into the vein but what caps it off at the elbow end? Do I have a dangly thing there for 6 months? What do people do while showering?

I also understand that I have to go into the hosp to have it flushed every week. Geez. Why don't I just get a room there........

Bathy

Hi Dianne

Nice to see you still posting, obviously full of positive thoughts, great to know.
((((Bathy))))

Hey Dianne

Hope things are alright you you hun and you are recovering well. Healing wishes and gentle hugs to you. x