If you were in my shoes

[Janet/FL]

Many of you have already walked in my shoes so I am hoping you may relate something that will help me with which direction to take.
I had surgery, lumpectomy, 7 nodes removed on 12-7-04. Moderately differentiated Invasive ductile carcinoma grade 2/3 no node involvement.
ER-PR negative, HER2 +3 - FISH postive.

I am 60 years old, am in pretty good health, but have always had little energy and tend to get sick, like a slight cold, and remain sick off and on for a few weeks if I over extend.

The question I have is what do I do about chemotherapy? I will have radiation therapy no matter what. Herceptin is not avaliable, it seems, for me since I am node negative. And the ER and PR make it seem like I should have chemo even without Herceptin. The recmmended treatment is A/C Which I guess is Adriamycin and Cytoxan taken every 21 days four times. Onclologist mentioned another one, but I can't read his scribblings. It looks like c/toxal, mrjlojryate, 5-FU. every 21 days for 8 sessions. I am sure that is not the names--just what his scribbles look like!

Dr. said that Adriamycin has been shown to be effective with HER2 + but I have not read anything about it.

So, what would you do? I have about a 50 to 75% chance of having no reocurance. (I had endometrail cancer 2 years ago. Surgery only.) Many of you have already had reoccurances. Did you not have chemo first time out? Did you have it and it came back anyway? Any advice or experiences would be welcome. I am supposed to start chemo January 3rd if I do. I was given the option of radiation therapy first while I consult other cancer centers re: chemo, but I know if I am to have chemo, the sooner the better.
Thanks all,
Janet

[The "odds"]

Always a tough question. I was and am chemophobic, and I did chemotherapy with Cytoxan, Adriamycin and 5-FU. (By the way, your doctor likely wrote Cytoxan, methotrexate, and 5-FU, one of the available treatments for bc.

Adriamycin is considered to be more effective for HER2/neu. I am HER2 +++ too.

You're asking a good question. What makes it harder is that for those who are newly diagnosed and are HER2+++, I haven't been able to find any of the online breast cancer prognosticators /predictors that include HER2+ as a factor, even though oncs recommendations do.

I was 50 at time of treatment and healthy.

[*_AlaskaAngel_*]

Sorry - I should have posted my name in the box for you in the prior post!

AlaskaAngel

[Brian]

You are unfortunately in one of the most difficult positions in the breast cancer treatment world. Much of your decision depends on the pathology of your tumor and your feelings about chemotherapy.

My wife's aunt recently succumbed to breast cancer and was originally diagnosed as node negative. Her cancer recurred within two years after her initial diagnosis and she battled the disease for a total of 7 years.

In my wife's case she was diagnosed in 1991. She took 6 treatments of CAF, tamoxifin for 5 years after, and received 36 radiation treatments. She had 4 positive nodes. She took the position that she did not want to look back after a recurrance and wish that she had taken that extra treatment.

Chemo is hard. The decision is yours. Good Luck and God Bless.

Brian

[*_StephN_*]

Hi -
These diagnoses are perplexing in many ways. First we have to get used to the idea that cancer is a very sneaky disease. Since I had 8/18 positive nodes there was no question about taking the chemo offered - Adriamycin (dose dense with 12 weekly treatments) and Taxotere x 4. Radiation for 36.
This was considered tough treatment and the cancer came back in a short time (within 6 months) anyway. I am Her2+++. I was not in the same place healthwise as you, but please do not be afraid of being sick, you should mainly be tired. The anti-nausea drugs work very well for most of us and we are able to eat to keep out strength up.
Also, if your white and red blood counts fall, there are shots that will work in your body to boost those so you can tolerate the treatment better.
Taxol was a better drug for me then Adriamycin.
All the best and please keep posting and reading. You may want to search the board for references to the drugs you mention. There is a lot of god info in the archives.

[Sheila]

Janet
I was 50 when diagnosed, a very small tumor, ER pR neg, no positve nodes, Her2 3+ invasive ductal...I did not have chemo, just a mastectomy, well it was back in my lymph nodes 1 1/2 years later. I have been on Herceptin a little over a year now, and it is back in my nodes again. If yoiu have the strength, do the chemo, it may come back anyway, we don't know. Iwish I had done it the first time.
Hugs
Sheila

[Deb K.]

Hi. I am a Her 2 survivor (almost 2 years NED). I had one postive node, and mastectomy. Because of the 1 positive node, I of course had to do chemo. But, many times, I have thought "Thank God for that 1 positive node", just so that I wouldn't have had to be in your shoes. However, having gone through the 4 rounds of A/C and 12 weeks of weekly Taxol at the age of 50, I can honestly tell you that it is very tolerable. I worked through the whole treatment, with the exception of the actual day of my appt. The pre-treat drugs make you tired, so I slept. But I was NEVER sick. One cold turned into a fever related incident, for which I took anti-biotics, but no big deal. I did lose my hair, but you know...it grew back. I would never want to have to look back and say...DAMN, I didn't do everything that I could have, even it it improved my chances a tiny bit. What if that one little node had been missed???? Life is too precious and 60 is so YOUNG! Go for it. Deb

[Deb K.]

Hi. I am a Her 2 survivor (almost 2 years NED). I had one postive node, and mastectomy. Because of the 1 positive node, I of course had to do chemo. But, many times, I have thought "Thank God for that 1 positive node", just so that I wouldn't have had to be in your shoes. However, having gone through the 4 rounds of A/C and 12 weeks of weekly Taxol at the age of 50, I can honestly tell you that it is very tolerable. I worked through the whole treatment, with the exception of the actual day of my appt. The pre-treat drugs make you tired, so I slept. But I was NEVER sick. One cold turned into a fever related incident, for which I took anti-biotics, but no big deal. I did lose my hair, but you know...it grew back. I would never want to have to look back and say...DAMN, I didn't do everything that I could have, even it it improved my chances a tiny bit. What if that one little node had been missed???? Life is too precious and 60 is so YOUNG! Go for it. Deb

[al from canada]

Dear Janet,
I'm sorry to her about your dilemma.
I think the Gold stanard these days is AC + Taxol, 4 tretments each 2 weeks apart. I would certainly look into getting Herceptin off-label. Had we persued this, initially I think it would have saved us a lot of grief. Research has shown that in HER2+++ cancers the herceptine augments the effects of the chemo.
Good luck and wishing you the best,
Al

[Janet/FL]

I want to thank those that have replied. Believe me it helps to know what others who have been there, think. And from others that have a similar problem.--HER 2 +.

I am particulary interested in Al's observation of AC + Taxol two weeks apart as the gold standard. My doctor didn't mention Taxol as part of it. He also said he would only give Herceptin if it was recommend by a major cancer center such as Sloan-Kettering. (I know he is afraid of a lawsuit as much as anything). If anyone knows of any treatment center that would OK it please let me know and I will be on the next plane camping out on their doorstep! I don't know enough about how to go about getting it, otherwise.

Any other thoughts on the recommendation of chemotherapy, please add. Tomorrow, PM, I go for a class on it at the doctor's and the more I know before hand the better.

Thanks again for all of your support. So sorry you all have had to go through this.
Janet/FL




>>I think the Gold stanard these days is AC + Taxol, 4 tretments each 2 weeks >>apart. I would certainly look into getting Herceptin off-label. Had we persued >>this, initially I think it would have saved us a lot of grief. Research has shown >>that in HER2+++ cancers the herceptine augments the effects of the chemo.

[Lyn]

Have to agree with Al, I had the AC radiation CMF in 1998 which was recommended and it came back not long after I finished. I then had Taxotere and it came back again 1 month later another node in the neck I then had heaps and heaps of radiation then came across Herceptin but not available in Australia at that time, so I had Xeloda for skin mets then another node and had Navelbine instead of Xeloda and added Navelbine, then wouldn't you know it back again a lump and skin mets so went on Herceptin/Carboplatin, lump stalled didn't get any bigger or smaller then added Taxol and it kick started it and after 26 weekly treatments I was NED but at the same time I had a rash on my neck so had biopsy done yesterday because we don't know if it is from radiation damage my wig irritating or whatever so that will be by New Years Eve news when I have the stitches out. As for tolerating it, I turned 50 in October and have been doing this ever since, I was told not to expect anymore than 2 to 3 years tops, sure showed them. I gave up work because the inconsiderate people in the office refused to stop smoking in the air conditioning, me being the only non smoker, and I worked for a geologiacal company so they brought back all the coughs and diseases they caught from all around the world. I have never been sick with the chemo, when I was lethagic I took more dexamethsone which in turn gave me the appetite of a termite, I suffered the consequences I looked like Stephanie in Bold and the Beautiful, now I look like Aunty Fester from the Adams family. I have lost my hair 3 times but I think for us Her ladies we should not be lumped in the category of normal first line treatment protocol for BC , and as we have weeded through the drug options for so long I think that at the moment I think the first drugs for all of us ladies should be Herceptin/Taxol/Carboplatin and I have to say it add Flaxseed oil capsules to your daily regime, I take 2x1000 twice a day and my hair started growing back while I was having the treatments, my nails are better than they were for ages, my heart is better than it was 3 months earlier by echo and the Omega 3 in the Flaxseed helps reduce tumour size, I can't dispute it, this is my story and I am sticking to it. I found that if I had maxalon if I felt nauseaus it made me restless and uncomfortable so I changed to trapisitron in the drip, you get this stuff as a pre med in the chemo regime, also the antihistimine they give is usually Phenergon which sends me to sleep, a bit akward when you are trying to drive so I changed to Telfast which did the job brilliantly and non drowsey. Any concerns you have can usually be sorted out on this board. The decision is yours in the end.

Love & Hugs Lyn

[rosie]

You did not mention a couple of things about your tumor...
1) What is the size? If it is over 1 cm, the standard treatment is definitely chemo
2) the location of the tumor. Tumors that are on the inside of the breast close to the breastbone might have negative nodes under the armpit. If the tumor was close to the breast bone, you could ask for a PET scan to see if it has spread to the lymph nodes under the breastbone if so...chemo
3) on the pathology does it show that the tumor has invaded the lymphatic or blood vessels? If so, you are at increased risk of recurrence and chemo would be a good idea
4) If I recall correctly, you had 7 nodes removed? That is considered a small sample size. Usually, it is preferred that more than 10 are a better diagnostic tool.

Finally, your best bet to get this beast is on the first go around. It is a very important decision you are about to make. Perhaps, it might be a good idea to get another opinion from a breast oncologist?

( Did they do standard screenings such as bone scan and CT scans of the abdomen and liver? You need to have these before you make your decision )

Personally, I would opt for chemo. It is a sneaky disease and with her 2 positive FISH positive breast cancer, your risk of recurrence goes up.

Good luck in your decision. As for the type of chemo, I do know that in the past it used to be Adriamycin, Cytoxan and 5 FU but studies have clearly shown a survival advantage when a taxane ( taxol or taxotere ) are substituted for the 5 FU.

Best wishes,
Rosie

[rosie]

oops forgot one more thing about your pathology. Since you had a lumpectomy, it is important to be sure that all margins are clear by at least 1 cm. ( All 4 sided and front and back ) If not, you need to have it reexcised. Since you are having rads, you also want to be sure that they do a "boost" of radiation to the tumor site. That is an extra dose of radiation directly to the area. I can't remember but I think it was an extra 1500-2000 rads.

[Peggy]

Janet,

I was 48 when diagnosed and, like some of the other women who have responded, found the chemo was not that bad. I not only worked my full time job through it but also continued my running (9 miles a week) through the chemo and radiation.

There were some days I felt a little tired and sometimes my stomach was a little upset but I never actually got sick.

The downside to all this is my cancer did return less than 6 months after all this chemo. My dx is invasive ductal, I had no node involvement, ER-, PR- , her2+. I think this mets even caught my onc off guard. They found a solitary nodule in my left lung - removed it surgically - a little more chemo and, now, I have been NED for 18 months.

Losing the hair is no big deal. I'd say go for it!

Peggy in Orlando

[Cindi]

Janet,

I was 41 when dx. ER-PR-, Her+++, Stage 2A, Tumor size 1.7 cm. and one node positive. Did as much as I could do treatment wise. AC, the 12 weeks of Taxol, then 28 rads. Then had 52 weeks of Herceptin (part of trial). My recurrence showed up in my axcillary lymphs (same side as the mastectomy) just six months after completing Herceptin. At that time, thankfully the cancer was not anywhere else (ct scan, bone scan and PET/CT fusion scan were all negative for any organ involvement).

Even with no node involvement, you just (sadly) cannot predict if you will need chemo to combat the cancer. The medical community is working toward that determination. But, until then, I would elect the chemo and try to find an onc. who would give you the Herceptin off trial.

Good luck to you and God Bless. There are many decisions to be made. Just work through the info. and God will guide you.

Cindi.

[Patty H]

At first I thought they were treating me too aggressive. My plastic surgen said she recommended that I do all they ask that way I would never look back and wonder if things would have been better had I done all they ask. The second time I was asked to do radiation my husband didn't think I should do it, but he didn't say till later and let me make the decesion. Later it came back and I'm not sure the radiation the second time around helped but I know if I hadn't had it, I would always question if I had taken it, maybe I wouldn't be in this boat. So for my own peace of mind I do what ever they ask of me. I'm glad to hear that you are checking out the situatation and all options. I went into this so blind. I do what they ask of me but I now question everything and read up as much as I can about what's what. Patty H

[Janet/FL]

I just want to say that you all have helped me clarify some thinking. I talked to a retired pathologist from Mayo Clinic and he helped me as to how to handle some of my questions. And so did a friend who had been to M.D. Anderson years ago with his wife with a different cancer. Anyway, I decided that I wanted M.D. Andersons protocal on my cancer. And that the best way to do it was to request that my oncologist ask for it. I asked that I get it in writing. We will see what he will do.I said I would be glad to follow what they would do right here if he will do it. Or if not I could go there. With the holidays, it is hard to run the maze but I am working on it. I will report back here what I learn from this.
From reading here, I almost laughed when the nurse told me to day that they would send me home with comapazine. They do run an anti nausa drug thru the IV. I said I heard that was out dated, but didn't remember the ones to ask for. If any one has an opinion her, please commit or I will try to track down the post. I think I can get the drugs I ask for, within reason?
You guys helped me get a decent nights sleep last night. Thanks

Jane/FL

[*_KathySC_*]

My Webpage (http://patient.cancerconsultants.com/breast_cancer_news.aspx?id=32354)

I found this article that may help.

Breast Cancer News



Her2/neu-Positive Breast Cancers are Not More Likely to Recur after Breast Conserving Therapy
Researchers from the University of Pennsylvania have reported that Her2/neu-positivity does not appear to increase the risk of local recurrence in women with stage I-III breast cancer who have been treated with breast conserving therapy. These results were presented at the 45th annual meeting of the American Society of Therapeutic Radiology and Oncology held in Atlanta GA, Oct 2-7, 2004.

The optimal strategy for treatment of women with localized breast cancer who do not have cancer spread to the axillary lymph nodes has not been identified and continues to be a topic of research. However, it is clear that without adjuvant therapy, a significant number of women with node-negative breast cancer will relapse. Determining factors that are associated with a higher risk of relapse can improve the ability to choose optimal adjuvant therapy. For patients who have hormone receptor-positive cancer, anti-estrogen therapy is usually administered. For women who have hormone receptor-negative cancer, chemotherapy is usually given. Research has shown that patients who overexpress the oncogene Her2/neu have an increased risk of cancer recurrence and Her2-positive cancer may be associated with a poorer response to hormonal therapy compared to Her2-negative cancer.

The recent University of Pennsylvania study was a retrospective review of the medical records from women treated for stage I or II breast cancer between 1993 and 2000. There were a total of 288 patients involved, 202 (70%) were Her2-negative and 86 (30%) were Her2-positive. Five years after treatment, there was no significant difference between the groups in recurrence rate, survival, relapse-free survival, and cancer spread (see table).


Her2-positive
Her2-negative

Local cancer recurrence
2%
2%

Overall survival
91%
90%

Relapse-free survival
90%
95%

Survival without distant disease
91%
95%


Reference: Harris ER, Hwang W, Lee EA, et al. The Impact of Her2/neu Status on Local Recurrence in Women with Stage I-II Breast Cancer Treated with Breast Conservation Therapy. Proceedings from the 46th annual meeting of the American Society of Therapeutic Radiology and Oncology, held in Atlanta, GA, Oct 2-7, 2004; Abstract #10.

[Janet/FL]

>>The recent University of Pennsylvania study was a retrospective review of the >>medical records from women treated for stage I or II breast cancer between >>1993 and 2000. There were a total of 288 patients involved, 202 (70%) were >>Her2-negative and 86 (30%) were Her2-positive. Five years after treatment, >>there was no significant difference between the groups in recurrence rate, >>survival, relapse-free survival, and cancer spread (see table).


Thanks so much Kathy for this info. Sure looks positive! Is there anywhere they indicate what kind of chemo was given?

Janet/FL

[Janet/FL]

Hi Rosie adn all! Hope you had a great Chrismas. Surprisingly, we did.

>>You did not mention a couple of things about your tumor...
>>1) What is the size? If it is over 1 cm, the standard treatment is definitely >>chemo

I had mentioned it, it is .9 cm -- I am always on the ??? part of the equation

>>2) the location of the tumor. Tumors that are on the inside of the breast close >>to the breastbone might have negative nodes under the armpit. If the tumor >>was close to the breast bone, you could ask for a PET scan to see if it has >>spread to the lymph nodes under the breastbone if so...chemo

I am pretty sure the tumor was away from the bresbone, closer to the outer part of the breast on the upper right quardrant?



>>3) on the pathology does it show that the tumor has invaded the lymphatic or >>>blood vessels? If so, you are at increased risk of recurrence and chemo would >>be a good idea

No blood or lypmhatic envolvement indicated.

>>4) If I recall correctly, you had 7 nodes removed? That is considered a small >>sample size. Usually, it is preferred that more than 10 are a better diagnostic >>tool.

I think that 7 is good as with the sentinal node, which is what they were supposed to go for--they only go for 1 - 3! Seven is good as at least 7 were negative.

>>Finally, your best bet to get this beast is on the first go around. It is a very >>important decision you are about to make. Perhaps, it might be a good idea to >>get another opinion from a breast oncologist?
>>>( Did they do standard screenings such as bone scan and CT scans of the >>>abdomen and liver? You need to have these before you make your decision )


Where would I look for a breast oncologist. Mine is a general oncologist.
I had a CT scan of my abdomen as I had complained of pain from my endometrial cancer. Had it just before the lumpectomy and it was negative. I doubt if the current docs would have ordered it. I did have a bilateral breast MRI at my insistance and it was negative.


>>Personally, I would opt for chemo. It is a sneaky disease and with her 2 positive >>>FISH positive breast cancer, your risk of recurrence goes up.


I am definitely leaning to not having the chemo. I am very afraid of the chemo. Having it if I can see that I really nead it, like mets, is one thing. Having it with out proof of benifit is another. A very hard decision to make. Even the radiation is hard to make but there is more proof that it would help--well, isn't there?


>>Good luck in your decision. As for the type of chemo, I do know that in the past >>it used to be Adriamycin, Cytoxan and 5 FU but studies have clearly shown a >>survival advantage when a taxane ( taxol or taxotere ) are substituted for the 5 >>FU.Best wishes,Rosie

I speak to my oncologist Tuesday and will talk with him about all of this. Including the fact that he did not inclue taxol.

Please, Rosie or anyone, comment further. I am seeing the oncologist Tuesday and asking more questions. Right now I am scared sh**less.
Thanks again,
Janet/FL

[Janet/FL]

Hi Joe
On another post on brain meds and trastuzumab you quoted,
"Since nearly one third of HER-2/neu overexpressing patients developed brain-metastasis, close surveillance for BM (clinical and/or imaging) is necessary even during effective systemic treatment."

This was from the Stemmler J, Kahlert S, Siekiera W, Heinrich B, Untch M, Heinemann V.. Munich, Germany; University of Munich, Munich, Germany; Oncology Practice, Augsburg, Germany

Can you clarify this for me? I am reading that 1/3 of HER2 3+ go on to brain mets. I am probably misinterpreting this but I didn't see anywhere where they qualifed the statement. I didn't see what, if any, treatment the BC patients had received prior to this.

Since I am trying to decide on chemo at the start of this process, I am understandably interested and not in the best frame of mind to decifer it. LOL

Thand\ks. Janet/FL




[3053] Incidence of brain metastasis (BM) in HER-2 overexpressing metastatic breast cancer (MBC) responsive to trastuzumab.

Stemmler J, Kahlert S, Siekiera W, Heinrich B, Untch M, Heinemann V.. Munich, Germany; University of Munich, Munich, Germany; Oncology Practice, Augsburg, Germany

Objective: The aim of this analysis was to determine the incidence of brain metastasis (BM) in HER-2/neu overexpressing MBC patients. A specific focus was the rate of BM occurrence in relation to response of other metastasis to trastuzumab treatment.
Patients: Among 136 HER-2/neu overexpressing patients, 42 (31%) were identified who developed BM. Her-2/neu overexpression was determined by immunohistochemistry and reached a score value of 3+ in the Hercep assay (Dako). Trastuzumab was generally applied at the standard loading dose of 4mg/kg and a weekly maintenance dose of 2 mg/kg.
Results: In one patient BM was the only manifestation, two further patients showed synchronous brain- and visceral metastasis, and a third patient developed bone metastasis after diagnosis of BM. All other patients (n=38) had received trastuzumab either as a single agent or in combination with chemotherapy prior to diagnosis of BM. In these patients,
Here is a summation of a study presented in San Antonio, just two weeks ago.

Ally, How is the radiation going?

Regards
Joe


the median interval between visceral and brain metastasis was 18 months (range, 7-69 months). At the time BM was diagnosed, 22 of 38 patients showed a response of visceral metastasis during systemic treatment (OR: 58%, 95%CI: 41-74%; liver: 5 CR, 9 PR, lung: 1 CR, 6 PR, pleura: 3 PR). Among the 42 patients with brain metastasis, the median survival from diagnosis of BM was 7 months.
Conclusion: It is concluded that trastuzumab is highly effective for treatment of liver- and lung metastasis in HER-2/neu overexpressing patients, while it appears to be ineffective to prevent or treat brain metastasis. Since nearly one third of HER-2/neu overexpressing patients developed brain-metastasis, close surveillance for BM (clinical and/or imaging) is necessary even during effective systemic treatment.


Date: Thursday, December 09, 2004 04:30 PM
Session Info: Poster Session: Treatment: Antibody-based Regimens (4:30 PM-6:30 PM)
Presentation Time: 04:30 PM

[Kristen]

Janet/FL

I think the piece you are missing is metastatic. These women have progression. They are Stage IV. Not to say that women don't just go from having stage II then it mets to the brain.

I believe Lisa, love and light went like that. In being vigilant she had asked for a MRI and they found them. She had no symptoms. I could be wrong, but that is what memory serves me.

There are other women, because of this board who are Stage IV and asked for an MRI and found out they had them again no symptoms.

HER2 is just an unpredictable beast that requires us to be keeping in touch with our body. Even when we try, we still sometimes miss it and at no fault of our own. It is a very hard balance. I was becoming obsessed at knowing everything and wanting everything checked alot. Not possible, at least at my stage. I finally have some peace of mind, how it happened or why, I don't know. I have been ok. I am NED/ I am having check ups every 3 months and it feels good not to go there and live 1/3 of my life at infusion suites and doctors apts and so on. It is a long journey and the women here who continue to have treatments because of mets, well, I think they are the bravest, smartest women around. They show courage and strength and an inner beauty that I admire.

I don't know if that answers your question or not. But it is 30% of metastatic bc patients who get bm. I do not know of any stats on any other stage. Take Care k