Dis Breast Cancer Survivors Part II -GAGWTA!

[jackskellingtonsgirl]

Thanks, all!

Linda - I am already authorized to speak to all of Mom's doctors, so I can absolutely phone the onc myself. I imagine the surgeon and the OB/GYN have already warned him about me!

Laurie - I don't get why the rep would CARE if Mom has the test if it really would be covered by their aid program. From what I understand, they have already DONE the test, and they know the results. Applying for aid would just allow Mom and the onc to have the results. BUT if the test shows high risk of recurrence it won't get her out of the chemo, so from that point is doesn't matter so much of she has the results. OK, well, maybe from the standpoint of choosing a chemo with a higher toxicity but better outcome if her recurrence risk is high.

Maureen - Yay for finishing radiation!!
I am sorry this is such a sad time for you! I think taking your trip with DS is important. I hope you enjoy your time with him.
I think Mom will get the aid application, then sit on it. That's how she rolls. Her onc will have to move forward without the results, which means chemo. And really, the outcomes are pretty darn close regardless of which drug they use so I don't know if it matter THAT much.

I hope everyone has a terrific 4th of July!!

 

[DeeCeeSW]

4 nodes? My, how things have changed. By those standards, I wouldn't have needed the 8 rounds of chemo I got.

Yes. my BS and Onco both said that because I had under 4 nodes involved that I could avoid RADIATION. Not the chemo! The chemo was a given with ANY node involvement. Sorry for the confusion. I should have worded that differently (or made a separate sentence!).

 

[Pea-n-Me]

Yes. my BS and Onco both said that because I had under 4 nodes involved that I could avoid RADIATION. Not the chemo! The chemo was a given with ANY node involvement. Sorry for the confusion. I should have worded that differently (or made a separate sentence!).

None of it makes sense to me, really. Avoiding radiation? With even two nodes positive, I don't see where that would be desirable, seeing as cancer was in that area, and the radiation is designed to clean up that area from any loose cancer cells. I would love to see some literature on this.

 

[snappy]

None of it makes sense to me, really. Avoiding radiation? With even two nodes positive, I don't see where that would be desirable, seeing as cancer was in that area, and the radiation is designed to clean up that area from any loose cancer cells. I would love to see some literature on this.

Amen to that. Even after complete anxillary removal it seems that the radiation would be advisable.

I am sorry but conservatism where cancer is concerned is something I don't get.

 

[snappy]

Thanks, all!

Laurie - I don't get why the rep would CARE if Mom has the test if it really would be covered by their aid program. From what I understand, they have already DONE the test, and they know the results. Applying for aid would just allow Mom and the onc to have the results. BUT if the test shows high risk of recurrence it won't get her out of the chemo, so from that point is doesn't matter so much of she has the results. OK, well, maybe from the standpoint of choosing a chemo with a higher toxicity but better outcome if her recurrence risk is high.

You are right, I think I misunderstood, if they already done the test on her tissue. It does seem strange if they have the results that it would not be provided to the doctor.

I do think it would be best if you talked to the onc. I like Linda's take on that. Don't worry about being too aggressive. I actually came to believe that doctors like their patients or the patients' advocates to be engaged and involved with questions, etc. I think it is more an issue if the TONE of your questions is too strident. That is where I have to really watch myself as I am known to be impatient and "too direct."

DH just got on me about this this week. I was too critical about an issue he is having with the orthopedic doc concerning his trigger finger. I don't want that doc to do his surgery and am pushing for a second opinion. My tone during our discussion really turned DH off.

I need to watch myself or we may have to call off that October WDW 30th anniversary trip.

 

[Pea-n-Me]

OK, so this stuff always gets the best of my curiosity.

The thing about it is that every case of breast cancer is so unique, it's hard to compare on a case to case basis. All the factors that need to be considered - menopausal status, tumor type, size, hormonal status, etc, type of surgery, node status, etc. No two cases are exactly alike.

Here's some information I found from the Dana Farber website. Reading it, one can see how utterly complex the decision making process is for each case.

http://www.dana-farber.org/can/cancer/View.aspx?lang=en&audience=1&doc=CDR0000062787#_70

This stood out (re LCIS), from this morning's discussion re node positive disease. (The rest of that section does bring up the issue of whether radiation would be warranted in node negative disease (especially in left breast tumors), which previously was always done with lumpectomy only. Maybe begs more questions than it answers. )

Patients with one to three involved nodes without any of the previously noted risk factors are at low risk of local recurrence, and the value of routine use of adjuvant radiation therapy in this setting has been unclear. The 2005 EBCTCG update indicates, however, that radiation therapy is beneficial, regardless of the number of lymph nodes involved.[56][Level of evidence: 1iiA] For women with node-positive disease postmastectomy and axillary clearance, radiation therapy reduced the 5-year local recurrence risk from 23% to 6% (absolute gain = 17%; 95% CI, 15.2%-18.8%). This translated into a significant (P = .002) reduction in breast cancer mortality, 54.7% versus 60.1% with an absolute gain of 5.4% (95% CI, 2.9%-7.9%). In subgroup analyses, the 5-year local recurrence rate was reduced by 12% (95% CI, 8.0%-16%) for women with one to three involved lymph nodes and by 14% (95% CI, 10%-18%) for women with four or more involved lymph nodes. In contrast, for women with node-negative disease, the absolute reduction in 5-year local recurrence was only 4% (P = .002; 95% CI, 1.8%-6.2%), and there was not a statistically significant reduction in 15-year breast cancer mortality in these patients (absolute gain = 1.0%; P > .1 95%; CI, -0.8%-2.8%). Further, an analysis of NSABP trials showed that even in patients with large (>5 cm) primary tumors, when axillary nodes were negative, the risk of isolated loco-regional recurrence was low enough (7.1%) that routine loco-regional radiation therapy was not warranted

 

[Pea-n-Me]

This'll make your head spin, LOL. This chart is in the link. I've highlighted my own options (the latter of which was me, really, because I had one node positive).

Table 2: Adjuvant Systemic Treatment Options for Women With Axillary Node-Negative Breast Cancer Patient group
Low risk
Intermediate risk
High risk

Premenopausal, ER-positive or PR-positive
None or tamoxifen
Tamoxifen plus chemotherapy, tamoxifen alone, ovarian ablation, GnRH analog*
Chemotherapy plus tamoxifen, chemotherapy plus ablation or GnRH analog*, chemotherapy plus tamoxifen plus ovarian ablation or GnRH*, or ovarian ablation alone or with tamoxifen or GnRH alone or with tamoxifen

Premenopausal, ER-negative or PR-negative
Chemotherapy

Postmenopausal, ER-positive or PR-positive
None or tamoxifen
Tamoxifen plus chemotherapy, tamoxifen alone
Tamoxifen plus chemotherapy, tamoxifen alone

Postmenopausal, ER-negative or PR-negative
-
-
Chemotherapy

Older than 70 years
None or tamoxifen
Tamoxifen alone, tamoxifen plus chemotherapy
Tamoxifen; consider chemotherapy if ER-negative or PR-negative

* Note: This treatment option is under clinical evaluation.

______________________________________________________________


Table 3: Treatment Options for Women With Axillary Node-Positive Breast Cancer Patient group
Treatments

Premenopausal, ER-positive or PR-positive
Chemotherapy plus tamoxifen, chemotherapy plus ovarian ablation/GnRH analog, chemotherapy plus tamoxifen plus ovarian ablation/GnRH analog*, ovarian ablation alone or with tamoxifen or GnRH alone or with tamoxifen

Premenopausal, ER-negative or PR-negative
Chemotherapy

Postmenopausal, ER-positive or PR-positive
Tamoxifen plus chemotherapy, tamoxifen alone

Postmenopausal, ER-negative or PR-negative
Chemotherapy

Older than 70 years
Tamoxifen alone; consider chemotherapy if receptor-negative

* Note: This treatment option is under clinical evaluation.

 

[jackskellingtonsgirl]

I think I am more confused now!

Mom is postmenopausal, estrogen positive, 6 positive nodes. Tumor was 3 cm at diagnosis, 2 cm at surgery. She is still on Arimidex (which I guess is basically tamoxifen for postmenopausal women). It is invasive lobular carcinoma, right breast.

With all those positive nodes I fail to see why it would matter if the recurrence risk was low. That would ONLY be recurrence in the breast! There is NO TELLING where those cells could be in her body. If they are just now kind of organizing into a tumor it could be months before they manifest into something detectable. I think they need to be snuffed out before they have the opportunity to form a tumor! I think the onc will probably agree with me.

 

[lookingforward]

I had 2 positive nodes that were small, ER/PR + and Her2 neg. Slow k67 scores (3 and 5) and middle and low histologic scores. My breast surgeon and radiation oncologist both showed me studies that showed that radiation increases survivability by 9% in node positive women. Used to be that rads were only mandated for four or more nodes, now they offer it with any node positive...they call it the "gray area". I did not want radiation but one of my nodes had a tiny bit of extra nodal extension (the cancer had broken free of the node a tiny bit) so I opted in for the radiation. I was really angry about it, but read the studies, etc and figured, for me, it was worth it. It was a huge decision and a painful one because after chemo I was mentally and physically exhausted and wanted to be done.

I will try and find the study that was done that convinced me. Not sure if I can find it. Treatments are always evolving. For instance, my radiation oncologist explained that half of her peers do the entire breast with no scar boost and half insist on the scar boost. There are no studies proving one is better than the other that she could point out. When my breast got really dark from the radiation she opted to skip the boost. I was delieriously happy but would have done it for the protection if needed.

Its such a difficult thing to make these decisions!

 

[lookingforward]

This is one article, not exactly what I was given, but interesting.

Survival Improved by Radiation After Breast Cancer Surgery

Key Words
Breast cancer, radiation therapy. (Definitions of many terms related to cancer can be found in the Cancer.gov Dictionary.)

Summary
Combined data from 78 randomized clinical trials show that radiation therapy after either breast-conserving surgery (BCS) or mastectomy in women with early breast cancer significantly reduces both five-year recurrence and 15-year mortality rates. This is the first research to show that postsurgical radiation therapy in this group of patients helps them to live longer in addition to lowering their risk of local recurrence.

Source
The Lancet, Dec. 17, 2005 (see the journal abstract).
(Lancet. 2005 Dec 17;366(9503):2087-106)

Background
In women with early-stage breast cancer treated with surgery alone (breast-conserving surgery or mastectomy), microscopic residual disease may not be eliminated and can eventually cause life-threatening metastatic recurrence. Radiation therapy after surgery has been widely recommended for women at high risk of recurrence, based on the results of clinical trials showing that such treatment cuts the rate of local recurrence (a return of cancer in the remaining breast tissue, scar, chest wall, or nearby lymph nodes).

However, the same trials, taken individually, have failed to show whether these women actually lived longer thanks to the additional radiation therapy.

For that reason, even with widespread support, these recommendations are not always heeded. When detected early enough, local recurrence can often be treated with additional surgery alone, so some physicians and patients still elect to avoid radiation therapy and its associated side effects.

The Study
Combined data (called a meta-analysis) from 42,000 women - collected from 78 randomized trials begun between 1958 and 1991 - was performed by the Early Breast Cancer Trialists’ Collaborative Group (EBCTCG). The availability of extensive 15-year survival data allowed the investigators to reliably quantify the relationship between successful local control and long-term survivorship.

The individual trials compared varying types of local control:

radiation therapy after breast-conserving surgery (BCS) vs. no radiation therapy after BCS
postmastectomy radiation therapy vs. no postmastectomy radiation therapy
more extensive surgery vs. less extensive surgery
more extensive surgery versus less extensive surgery, with radiation therapy after both
more extensive surgery vs. less extensive surgery, with radiation therapy only after less extensive surgery
The EBCTCG reviewed the trial results for how long it took breast cancer to recur; whether recurrence was local or distant; mortality (due to breast cancer or otherwise); and the incidence of second primary cancers before breast cancer recurrence.

Results
Radiation therapy after breast-conserving surgery was responsible for a highly statistically significant reduction in local recurrence. Combined, the data showed a 19 percent absolute reduction of the risk of recurrence five years after treatment. Although none of the trials showed a significant reduction in 15-year mortality when analyzed on their own, the meta-analysis revealed a highly significant absolute reduction of 5.4 percent.

For women with cancer that had spread to the lymph nodes (node-positive) and who underwent a full mastectomy, postoperative radiation therapy provided a similar reduction in recurrence and mortality: a 17 percent absolute reduction of the risk of recurrence five years after treatment and a 5.4 percent reduction in 15-year mortality.

When subgroups were analyzed, the investigators found that the higher the risk of recurrence, the greater the potential benefit of post-surgery radiation therapy. The investigators concluded that for any group of early breast cancer patients, a local treatment difference that reduces the five-year local recurrence risk by 20 percent would reduce the 15-year breast cancer mortality by 5.2 percent.

In other words, says Jeff Abrams, M.D., of the National Cancer Institute’s Cancer Therapy Evaluation Program, “for every four local recurrences that are avoided by the addition of radiation therapy, about one breast cancer death could be avoided over the next 15 years.”

Limitations
The one drawback of radiation therapy noted by the EBCTCG meta-analysis was an increase in the incidence of secondary cancers (new cancers unrelated to the original breast cancer) and in mortality from heart disease and lung cancer. However, the investigators emphasize that modern radiation therapy technology now minimizes the radiation doses to the heart, lungs, and other breast, compared to the doses given at the time these trials were conducted.

Comments
"These long awaited results from the EBCTCG overview analysis demonstrate an important effect for adjuvant radiation therapy in the treatment of primary breast cancer," says Abrams, noting that the survival benefit is apparent both in women who undergo breast-conserving surgery and those with cancer in their lymph nodes who undergo a mastectomy.

The authors place their results in the context of combination therapy, and state that “the moderate differences in 15-year breast cancer mortality produced by better local control can be combined with the moderate differences produced by chemotherapy and hormonal therapy…yielding in total quite substantial effects on 15-year breast cancer mortality.”

 

[Pea-n-Me]

Great article, Maureen. My own feeling, and that of my team as well, was to "give it everything we had" then. I think it was a good decision. BTW, I've said it here many times, that I was feeling similarly when I was done with treatment and for a long time afterward. I'm still not 100% "over it". And I'm sure your mother's death has added a whole other level of despair. You're in my thoughts and I hope you find what you need in terms of coping. I hope you know I'm only a PM away if you ever want to talk.

 

[DeeCeeSW]

Thanks for all that info. I do have to say that it has gotten me thinking (of course, why wouldn't it?), but based on my experience at Sloan Kettering, and the faith I have in my breast surgeon (a woman who is well-known, well-versed and very knowledgeable, but of course is not G-d and cannot predict my future), I am going to stick with the treatment plan as it is. I do believe that each case is individual, and reading these studies show that radiation therapy can be beneficial and could possibly increase my chances of not having cancer return. However, I, my friends, have had enough. We all have a limit, or a threshold, and I have reached mine. It ends with 2 more chemo treatments and Tamoxifen (for 3 years and then on to post-menopausal meds).

Yes, I know I am 41, I have a 7-year-old son, a wonderful husband, and a million more good reasons to want to live as long as possible. However, I do not want to live the rest of this life worried about the "what if's." If cancer does come back, it may have little or nothing to do with what happened to me in the present. That may sound silly or ridiculous to say, but in reality, we are all at risk for cancer, of all types. I'm not a dolt, I do, of course know that the chances of recurrence for me are going to be higher than the next gal, but I feel I am doing what I can to try to avoid it.

My breasts are gone, the pathology report showed clear margins, with no cells at the incision sites, 12 lymph nodes were removed with 2 involved, and my bone scan shows no indication of spread. Other organs are functioning well. This to me is good. I know, I know, that's NOW, what about later? Well, hopefully this horrible "red devil" that has put me in a consistent state of low level nausea since Tuesday is going to do its job.

OK, that being said, remember that I am speaking for me, these are my personal feelings and I am not making a statement about anyone else's decisions. For example, I think Maureen did the right thing, because it made sense for her. Our diagnosis was almost identical, yet she opted for radiation and I have not. And I know that Maureen will have a long, healthy and happy life.

If I was told it was highly recommended, OF COURSE I would do it. However, both my BS and my onco (who do not know each other personally) both told me that they felt radiation was not needed (w/o any prompting from me). Second opinion at Sloan said the same (my onco is local).

Thank you again for the knowledge, as it is most certainly power.

Love you gals,
Dawn

 

[lookingforward]

Thanks for all that info. I do have to say that it has gotten me thinking (of course, why wouldn't it?), but based on my experience at Sloan Kettering, and the faith I have in my breast surgeon (a woman who is well-known, well-versed and very knowledgeable, but of course is not G-d and cannot predict my future), I am going to stick with the treatment plan as it is. I do believe that each case is individual, and reading these studies show that radiation therapy can be beneficial and could possibly increase my chances of not having cancer return. However, I, my friends, have had enough. We all have a limit, or a threshold, and I have reached mine. It ends with 2 more chemo treatments and Tamoxifen (for 3 years and then on to post-menopausal meds).

Yes, I know I am 41, I have a 7-year-old son, a wonderful husband, and a million more good reasons to want to live as long as possible. However, I do not want to live the rest of this life worried about the "what if's." If cancer does come back, it may have little or nothing to do with what happened to me in the present. That may sound silly or ridiculous to say, but in reality, we are all at risk for cancer, of all types. I'm not a dolt, I do, of course know that the chances of recurrence for me are going to be higher than the next gal, but I feel I am doing what I can to try to avoid it.

My breasts are gone, the pathology report showed clear margins, with no cells at the incision sites, 12 lymph nodes were removed with 2 involved, and my bone scan shows no indication of spread. Other organs are functioning well. This to me is good. I know, I know, that's NOW, what about later? Well, hopefully this horrible "red devil" that has put me in a consistent state of low level nausea since Tuesday is going to do its job.

OK, that being said, remember that I am speaking for me, these are my personal feelings and I am not making a statement about anyone else's decisions. For example, I think Maureen did the right thing, because it made sense for her. Our diagnosis was almost identical, yet she opted for radiation and I have not. And I know that Maureen will have a long, healthy and happy life.

If I was told it was highly recommended, OF COURSE I would do it. However, both my BS and my onco (who do not know each other personally) both told me that they felt radiation was not needed (w/o any prompting from me). Second opinion at Sloan said the same (my onco is local).

Thank you again for the knowledge, as it is most certainly power.

Love you gals,
Dawn

Dawn...I totally understand! The thing that pushed me over the edge was the extra nodal extension. It was kind of funny the first week I did radiation I was telling anyone unfortunate enough to be around me "I'm here because of one lousy node bustin loose!". I know...they thought I was certifiable! And I was. And I still am!

The friendship I have found here really means a lot to me. Thanks for offering me such kindness during my sorrow. I will always be grateful!

 

[lookingforward]

Great article, Maureen. My own feeling, and that of my team as well, was to "give it everything we had" then. I think it was a good decision. BTW, I've said it here many times, that I was feeling similarly when I was done with treatment and for a long time afterward. I'm still not 100% "over it". And I'm sure your mother's death has added a whole other level of despair. You're in my thoughts and I hope you find what you need in terms of coping. I hope you know I'm only a PM away if you ever want to talk.

THANKS!

 

[DeeCeeSW]

Dawn...I totally understand! The thing that pushed me over the edge was the extra nodal extension. It was kind of funny the first week I did radiation I was telling anyone unfortunate enough to be around me "I'm here because of one lousy node bustin loose!". I know...they thought I was certifiable! And I was. And I still am!

The friendship I have found here really means a lot to me. Thanks for offering me such kindness during my sorrow. I will always be grateful!

Just reread my pathology report over regarding my lymph nodes and it says, "No extranodal tumor extension is present." Just needed to check. I appreciate your understanding a lot, Maureen. I'm so glad that you are done with both chemo and radiation. Here's to looking forward!

 

[jackskellingtonsgirl]

Thanks for the article!

I have not seen Mom's post-op path report, so I don't know what they say about nodal extension. But that is a darn good question to ask the onc!

I hope she takes good notes next week when he tells her what he wants to do. Maybe I will try to get a call in as sort of a conference while she is meeting with him so she can't say "I forgot to ask" or "I forgot what he said".

 

[MerryPoppins]

I'm home from vacation. We had a wonderful time. It wasn't Disney, but we were all together, so I can't complain.

I've caught up reading, but I'm too tired to respond. Now that we're home the relatives have decended for the holiday and my mom's birthday. Hope you all have a fantastic 4th of July. I'll check in later.

 

[havinfun]

I think I am more confused now!

Mom is postmenopausal, estrogen positive, 6 positive nodes. Tumor was 3 cm at diagnosis, 2 cm at surgery. She is still on Arimidex (which I guess is basically tamoxifen for postmenopausal women). It is invasive lobular carcinoma, right breast.

With all those positive nodes I fail to see why it would matter if the recurrence risk was low. That would ONLY be recurrence in the breast! There is NO TELLING where those cells could be in her body. If they are just now kind of organizing into a tumor it could be months before they manifest into something detectable. I think they need to be snuffed out before they have the opportunity to form a tumor! I think the onc will probably agree with me.

I agree with you. I think she needs to use whatever they can give her to help prevent a mets or a reoccurance. How can they say low risk with her having pos. lymph nodes? JMHO

 

[havinfun]

None of it makes sense to me, really. Avoiding radiation? With even two nodes positive, I don't see where that would be desirable, seeing as cancer was in that area, and the radiation is designed to clean up that area from any loose cancer cells. I would love to see some literature on this.

I read an article that stated that women who had insitu cancer and received radiation had a 50% less reoccurance than women who did not have radiation.

A little about me. I was diagnosed in April 07 with inflammatory breast cancer. Are there any other women on this site with that type of cancer? IBC is rare and occurs in 3-5% of breast cancer. By the time it is diagnosed it is Stage IIIB or V. I am lucky, I was stage IIIB. The survival rate at 5 years is 40%. It usually reoccurs within the first 2 years.

Anyway, I have been through chemo, a mastectomy and radiation 2x a day for a month. I finally finished my herceptin treatments on June 2nd. My pathology results were very good. I had chemo before surgery.

On top of cancer, my oldest son returned to Iraq today to finish his 15 month tour there. So I have been really sad today.

Planning my Disney trip is very good for me. I am so glad to be alive and to be be able to go there. Now if I could just build up the endurance for all the walking.

Oh I am rambling. Sorry. Thank you everone for being there for me and the rest of the survivors.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Happy Independence Day!​

Maureen- You are in such a tough, raw place. Finishing up treatment is a mixed bag of feelings. I can't imagine what it's like go through the loss of your mom on top of it. I think it's wonderful how you and your dad are both helping each other. I'm sure it meant a lot to him to be there, even though there's no way he could take your mom's place. I am glad your trip with your son is still on. He sounds like a terrific kid! Good job mom!
Holding you close in my thoughts and prayers...

Dawn-You have a great attitude! I did a lot to fight my cancer, but I did not do radiation...and I admit I did not want to. I know some people would find that strange because I did lots of surgery and chemo. It wasn't even about being "done" or having to get burned or shlepping to the hospital every day...I had some pretty strong feelings about what God was telling me I needed to do. Some of it meant changing drs, and even going against recommendations. I felt God telling me NO rads, so the thought of it scared the hell out of me! I did meet with a rad onc and thank God she did not recommend it to me. I have seen articles since then like the one Maureen posted, that state a higher survival rate for patients who received rads, even with masts. I think that's great news for those who need it. It wasn't generally recommended for patients like me with 2+ nodes at the time I was going through it, but for some patients it was and my onc wanted to get the rad onc's opinion. I do not regret not getting rads for one second. You are right, it's so personal. Follow your heart...

havinfun- I'm glad you caught your IBC early, that's great news! How were you diagnosed? Was it visible? I'm sorry you have to endure having your son gone for so long. Thank you for your sacrifice so he can serve us. I'm praying for his protection and safe return home.

jackskellingtonsgirl- I think arranging a call during your mom's onc visit is a great idea! See what an education you're getting!


It's raining here...rain in the forecast for the entire weekend. I kept our plans open and flexible, good thing!
I hope everyone enjoys their freedom today!

"Life, Liberty and the Pursuit of Happiness"