Doctor says incurable....

Margot · Guest

Hello,

Monday I went to Dana Farber in Boston with my best friend for a second opinion. She is 51 years old, has four children and lives in an environment with extremely high breast cancer rates. Her mother also died of breast cancer many years ago.

Having said that--- the doctor we saw told her that her cancer is incurable and to expect the worst. (In so many words.) Here are the circumstances:

My friend has had cancer three times. The first two times she was diagnosed with DCIS. She had one lumpetcomy with chemo and radiation. The second time they removed the breast. Both times the cancer appeared on the same side of the body. No radiation or chemo the second time.

This third time began like this: Experiencing extreme pain in the same side again, they did a PET scan. They found cancer in a horse shoe shape between two ribs on the chest wall. They tested the tissue and found that it was Estrogen and progesteron negative but Her2-neu positive. (3+) I don't think there has ever been any lymph node involvement and no mestastasis beyond the chest wall. (so, I assume, this is called a regional mestastasis versus a local or distant.)

I don't know the size of the tumor. All I know is that it is a horse shoe sized shape, so I assume it is several small tumors rather than one. The radiologists say there is no bone involvement now.

She was put on Herceptin along with navalbine and they'll consider radiation in the future.

Question: This doctor we saw in Boston offered no hope. He told her that if they "can't cut it out and put it in a bucket, there is no cure." And that, if she wants to see her grandchildren then her oldest daughter "better start soon." I realize his bedside manners are abhorrent, but is this true? Her cancer is inoperable, but is it true there is no hope? Beyond miracles, etc.?

Any information you can give me would be most helpful. My friend is not a "researcher." She asks very few questions, in fact, doesn't really want to know, and is just going with the flow. I, on the other hand, feel that the more we know the better choices we can make, so I'm trying to stay one step ahead of the game.

Thank you so much for your help.

Tearful in Boston....

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Margot

Thanks for your post. From what you are telling me: your friend has a tumor with extension to the chest wall, making this a T4 on the TNM staging system, no lymphnodes or distant metastasis. So she is a stage IIIB.

Assuming all the data above is correct, I got the following excerpts from Up-to-Date

[quote]Combined modality therapy utilizing induction (neoadjuvant) chemotherapy followed by locoregional therapy (surgery, radiation, or both) is emerging globally as the standard of care for LABC, including inflammatory breast cancer. On average, 75 percent of women have a major clinical response to induction chemotherapy, and roughly one-half of these are clinically complete responses (ie, no evidence of residual tumor on clinical or radiographic evaluation). One-half to two-thirds of clinical complete responses in the breast will be pathologically confirmed complete responses (ie, no evidence of tumor in the surgical specimen).

Several studies indicate a correlation between response to induction chemotherapy (particularly the axillary response), and relapse-free survival as well as overall survival. Patients with negative lymph nodes after neoadjuvant chemotherapy fare better than those with positive lymph nodes, and the risk of recurrence and death increases in proportion to the number of positive nodes (show table 1).

One of the major reasons to pursue neoadjuvant or induction chemotherapy is to increase the likelihood of successful breast preservation in women with large tumors, although this approach is not applicable to women with inflammatory breast cancer. Some concern has been raised about whether local failure rates are higher in women who required downstaging to be eligible for BCT compared to those who were candidates before chemotherapy (see "Optimal locoregional therapy" below).

Surgery should only be attempted if a macroscopically complete resection can be accomplished. Patients who remain inoperable after induction chemotherapy should receive locoregional radiation therapy with subsequent surgery, if feasible.[/quote]

So if the tumor is unresectable, therapy is usually chemotherapy and radiation.

regards,
Leo[/quote]
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Tracey · Guest

Hi Margot,
How lucky your friend is to have you. Hopefully Dr. Leo can answer a lot of your questions. I don't think your friend's diagnosis sounds as ominous as the doctor at Dana Farber seemed to say. I read the www.bcmets.org website a lot, and the women there who all have distant metastasis are living many years with mets to the bones, liver, lungs, etc., with a decent quality of life as well. You said Dana Farber was a second opinion for your friend, what was her first opinion? I say she needs to keep looking until she finds a doctor that will make her feel supported and hopeful regarding treatments that may be able to extend her time and maintain the quality of life she has been enjoying to the greatest extent possible. And definitely check out the bcmets website, the ladies there will have all kinds of information for you and your friend.
Wishing you both all the best,
Tracey

MuttsMom · Guest

I agree, your friend needs to find an oncologist that is supportive and will treat aggressively. There isn't a cure for any breast cancer. Hers are local mets, so she's not a Stage IV, but Stage IIIB. Sorry, I know the one before me told you that already, but it's 2:15 a.m. and my brain isn't working and I can't remember who posted to call her by name....sorry.
I've seen Stage IV ladies live many years with distant mets, some they get stable and of course some they don't, but you're not looking at Stage IV.
I was dx Stage III with 5.5 cm tumor and 9+ nodes out of 16, so I was a Stage IIIA, but thank God, 2 years and 8 months later, I'm still doing good with NED (no evidence of disease).

She truly is lucky to have you as a friend. I know what it's like to be the one going through this journey from hell and unfortunately, I know what it's like to stand by someone who's dealing with it, so I know what it's like to be on both sides of this disease.

My suggestion is encourage her to at least get a 2nd opinion. From what I know of Her2, they use herceptin only with a reoccurence, not during the original dx, correct me if I'm wrong Leo. Did they give her herceptin when she had her 1st reoccurence? The chemo you mentioned I've seen used alot with ladies with distant mets, so it must be good if alot are getting it.

I find it hard to believe that it's hopeless as he's implying unless there is more to it then we know, but it sounds like you have been there with her and know everything that has been said, so where there is life there is hope. I'm sure she's beyond depressed hearing the way her onco phrased things, but she'll get mad and put her fighting armour on again and fight this beast!!!

Hugs and prayers for both of you
Nancy

Shirlann · Guest

Hi dear sister's friend.

While I was still working I was posting on AOL's BC site. They have a whole section of women who call themselves "Stage IV Amazons". Some of these gals are 17 years and more living with mets. They find them and then they just zap them as they pop up.

Of course, not everyone is this lucky. Some go quickly and others not. Who knows. But I would surely recommend that your friend find someone with a broader view.

And if possible, have her connect to this site. I only had it at work so I have lost contact with this site but those gals were wonderful and very helpful to each other regarding Trials, new ideas, etc.

Bless you, Shirlann

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