No treatment after surgery?

ladybug728 · January 2010

My cancer is considered to be an advanced Iocal recurrence of DCIS, grade 3, that I had 5 yrs. ago, for which I had a lumpectomy, radiation, and 5yrs. (-2wks.) of Arimidex. I finished 5 months of neoadjuvant ACT and had a modified radical mastectomy on my left breast on Dec. 10, 2009. My ILC when DX was 12cm. and amazingly, I had a clear mammogram just 6 wks. prior to DX. Fortunately, the AC drastically reduced the tumor. Post surgery pathology states there were no cancerous lymph nodes, but of course, there is no way of knowing for sure because chemo was given first. The cancer remaining in the breast was very diffuse and scattered. My cancer is ER+/PR+, HER-, stage 2b and grade 1 (though there are a lot of doubts amongst my Drs. as to how a low grade tumor could show such rapid growth...because I was on a clinical trial, I had blood tests and breast exams every 6 mos. and no one and nothing saw this cancer coming).

Because I already had radiation, I cannot do radiation. Because my aromatase inhibitor failed, I cannot do anything in that class of hormones. Because I have 3 genetic disorders that increase my chances of getting a blood clot, I cannot do tamoxifen. I feel very uneasy not doing anything else. Has anyone else heard of such a situation? Is there anything else I can do?

Gitane · January 2010

Hi ladybug,

I had DCIS, a large tumor that mammo didn't see, a good response to AC with some diffuse, scattered tumor cells after treatment. We do have a lot in common. I am still on Femara. This is about the end of the 4th year I'm on it. My tumor was clearly grade 2, though.

I don't know enough to recommend anything. I have heard Faslodex is a hormonal that is used with AI's once they have failed or instead of them. It is given monthly by injection, I think. Faslodex is a SERD; rather than blocking the estrogen receptor I think it destroys it. I don't know about the blood clotting SE, or if it would work in your case. Just an idea to discuss with the oncologist.

My oncologist also put me on a low dose of Celebrex. It is sort of like aspirin but works more on inhibiting COX2.

I am glad you have treatment and surgery behind you now. At least you can focus on recovering now.

wallycat · January 2010

First I just want to say how sorry I am you are going through this. This is, for many of us reading it, very scary and frustrating. Here we poison our bodies with these drugs, and when/if they fail, it is, for me anyway, gut-wrenching.

I am not a doctor so can't offer anything...but will throw out some ideas.

Since you were put on Arimidex, I assume you are postmenopause...if not, that could be the reason Arimidex did not work. Aromasin is supposed to work slightly differently and it is an AI as well, so that may be an option.

Evista is a bone building drug and studies show it helps women who have never had cancer get a side benefit of lower bc risk. Even though there are no studies, if you need bone density, something like this may be an option in hopes that it works.

There's a section here called Alternative treatment or some such name and you may be able to read through that to determine herbs/supplements that may help.

I wish you the best of luck. I just took my first arimidex pill after 2-1/2 years on tamoxifen and I fear the docs will say to stay on it for 10 years......then I read your story and wonder what I will do.

ladybug728 · January 2010

Gitane.....I do want to ask my On about the Faslodex.....on paper it seems like an alternative that might work. I did notice that it is discussed in reference to cancer with mets, so I don't know if that makes a difference. My first cancer was a grade 3 and if this is considered a recurrence, it is difficult to understand how it changed grades. Yes, I am focusing on recovery, but I am feeling like I should be doing something more. It's scarey.

Walleycat....yes, I am 61, and clearly postmenopause. Aromasin is another aromatase inhibitor and my On ruled it out. She also ruled out the Evista, because it is for premenopausal women. I guess I will take another look at the alternative treatments, even though I have not been a big fan of that approach in the past.

Thanks to both of you for your words of support! I am feeling a little lost at the moment.

Ladybug

Jan1 · January 2010

This is great topic and I wish I had a crystal ball to know if the after care choices I have made are the right ones.

I had DCIS, with microinvasion grade 3, ER+ and PR + I don't think a HER was done. I had mx because there were 2 other areas of BC that my surgeon was convinced were BC even though they were not biopsied, same pattern on the mammogram and he wasn't comfortable with doing a lumpectomy. My onc agreed with the surgeon. I chose not to do Evista or Arimidex as I was told that I had a 98%+ cure with the mx. I pray that the statistics are right. I pray that the other breast stays BC free, but on this years mammogram the tissue is so dense that the radiologist stated that if there was BC there, he wouldn't have been able to tell. He did tell me that he didn't see any changes from the mammogram done the year before. I had an MRI done a year ago showed the good breast to be clear. Now I wonder if I should have done a bilateral mx just to be safe or if I am worrying unnecessarily?

Jan

wallycat · January 2010

You may want to get a second opinion. Many ladies post that Aromasin acts more like a steroid and studies I have read show that Aromasin and Femara work differently than Arimidex. Same outcome intended, but a different method to accomplish it.

I'm surprised Evista was told to you as only premenopause. Most women in premenopause don't have bone issues. Post meno is when we have the problems.

I wouldn't hesitate to contact a second onco for another opinion if it were me.

Anonymous · January 2010

ladybug----Evista is only approved for postmenopausal use and only for prevention of bc, not for those who have already had an invasive bc.

Anne

ladybug728 · January 2010

Jan1....I think you did the right thing to do a mx. Sounds like you didn't need to do radiation either. As for the dense breast on the mammogram, it reminds me of the letters I got for many years after each mammogram that had a disclaimer saying my breasts were so dense that they couldn't rule out BC. I guess alarm bells should go off each time that happens, so that it is mandatory for practitioners to find another way to look at your dense breast to be SURE that there is no cancer.

Wallycat...what my On fears is that if the action of all aromatase inhibitors is to block estrogen production, and Arimidex failed me, then there is a good chance all other aromatase inh.. would fail as well. Is it worth it for me to put in another 4-5yrs. for another failure?....I'm not sure I can take the chance....and my Dr. questions it also. However, I will do some research on the action of Femara and Aromasin and see if I can find out how different their actions are.

Another thing that is interesting is that one research paper I read discussed the fact that ILC often does not respond to tamoxifen because the estrogen receptors are not true estrogen receptors.....so tamoxifen sounds very questionable for anyone with ILC....of course, on the other hand, you could be one of the lucky ones for whom it works successfully. It is all a game of chance. No guarantees for any of the hormone treatments actually.

...my mistake about the Evista being for premenopausal women; as awb wrote, it is for PREINVASIVE BC. My chemo brain at work again.....sorry.

I have had the opinion of the tumor board and 2 other oncologists, who continue to recommend tamoxifen, even though my geneticist has told me I am at moderate risk for blod clots...my daughter just had a blood clot in her brain this past year....we share the same genes. I am sorry, that just seems risky to me. However, saying that, I actually filled a prescription for the tamoxifen and then when I came home I just couldn't bring myself to take it. My On called me with second thoughts about it also.

Jan1 · January 2010

Thanks ladybug and Anne and all that responded. I decided not to do the Evista after doing some research on the web. The consensus from my understanding was that there was no evidence that it helped with a new onset of DCIS. My onc thought it wouldn't hurt and might help. I just didn't want any other chemicals in my body that may not be necessary. I do wonder how my ancestors made it as long as they did without all of the pills. I am not anti medication, I take enough, I just want to make sure that what I do take doesn't cause more harm than good. I do know that if my cancer were any bigger, I would have done the Arimidex or alternative, and if my cancer returns, I will always regret not doing the medication. I wish I had a crystal ball. Thanks ladies, this is a great subject. Jan

Gitane · January 2010

Ladybug, Do you think Zometa infusions every 6 months might help? A lot of us are doing that now. G.

ladybug728 · January 2010

Are you on a clinical trial for Zometa? I see from the web that this drug is not been tested for postmenopausal women, only premenopausal women made menopausal by by cancer fighting hormone drugs.

dlb823 · January 2010

Ladybug ~ Have you read Anti-Cancer, A New Way Of Life by David Servan-Schreiber, MD, PhD and 2x cancer survivor? Also Beating Cancer With Nutrition by Patrick Quillan, Ph.D., RD, CNS and former VP of Cancer Treatment Centers of America. And one more... Life Over Cancer by renown integrative specialist Keith Block, M.D. All of these approaches are integrative -- that is they use proven alternative treatments in conjuction with an individualized conventional approach, to strengthen your body and significantly reduce side effects. But the nutritional components each doctor discusses are all similar and well-researched. So, my thinking is, if you can't do full-blown integrative, at least take the best, scientifically-proven natural stuff these docs have written about.

Of course, going to a reputable cancer center that specializes in integrative medicine would be another option if you can find one near you. And if you aren't already doing so, working with one of the larger breast cancer centers (UCLA, USF, Stanford, etc., depending on where you are) might also yield more specific experience with your types of pre-existing conditions than a local or regional hospital will be able to offer. Deanna

Gitane · January 2010

Ladybug, No, I'm not on a clinical trial. I'm postmenopausal. I believe it is approved for me because I have osteopenia from the Femara, however, I also think my oncologist recommended it because there is some evidence it may help prevent bone mets. G.

DFC1994 · January 2010

Hi,

I read your post and had to reply.I am in almost the same situtation as you. I had a DVT and was tested and was positive for 2 blood clotting disorders and therefore they would not risk me taking tamoxifen and between the cancer Dr and my breast surgeon they decided I would have the same benefits if I had my remaining ovary removed.I did that but I still worry that no chemo or rad was given. I questioned this and was told that since my tumors were small(both 0.9CM)and under 1 CM chemo was not needed and no rad since I had both breast removed.No lymphnodes were cancerous.It is scary to not have the pills to help with recurrence. I hope by having my ovary out is enough for me. I see my cancer Dr again of Feb 9th and will question him again about this.

ladybug728 · January 2010

Thanks dlb823.....I have been wondering about the nutritional approach and you have given me some great options there. I am in the Kaiser Permanente system and they seem to have a great team approach. I am considering a prophylactic removal of my other breast as a way of reducing my risk, and am seeing a plastic surgeon about that next Wednesday. I am looking at a DIEP reconstruction of both breasts.

Gitane...I will keep this in mind. I, too, have ostopenia. I will bring this up with my oncologist as a possible option.

DFC1994...I am glad to know there are people out there with blood clotting issues. It's scarey, isn't it? I keep mulling things around in my brain, trying to determine what else I can do. I am not even sure they will do a DIEP reconstruction of my breasts, for fear of it failing because of blood clotting issues. Are you considering reconstruction? I keep thinking that I should do Tamoxifen anyways....I am not being suicidal, but I do feel that if they do not allow me to do a DIEP reconstruction, then I am left with few options. I guess I am feeling a bit desparate.

DFC1994 · January 2010

Ladybug,

Yes it is extremely scary with the clotting disorders.I have the prothrombin 20210 and another one,I had DVT in arm.I have to use caution now before and after any surgerys,long travel,plane trips etc.I am currently on coumadin and not sure if its a lifetime thing or not yet.My Dr said he would talk to me about it later on.I had my ovary out Dec 15th and had to stop the coumadin and go on lovenox shots every 12 hours for 5 days before surgery and 7 days after(NOT FUN).But it protects from clotting while off the coumadin. I will have to do a repeat of lovenox when I have my exchange surgery,hopefully in May.I have come to terms the genetics clotting disorder is a lifetime thing that I will have to deal with. I did not know I had it until I developed the DVT and was tested.The clotting disorder is the reason they would not risk giving me tamoxifen since blood clots is a side effect.They chose to take my ovary out as treatment since my cancer was hormone fed.

I am in the middle of reconstruction now. I had tissue expanders placed at time of mast.I have had 3 fills to date.One infection in armpit nodes that did not get down around expanders(thank God).I can't wait to get the expanders out and the implants in.The expanders are so uncomfortable.I have a few more fills to go then about 4 weeks after the last one they will schedule surgery.

ladybug728 · January 2010

DFC1994...Just out of curiosity do you know whether you are heterozygous or homozygous for your gene mutations? I also have the prothrombin 20210 mutation, as well as the Leiden V mutation, and have an activated protein resistence for protein C, which is an indicator of a 3rd mutation. My mutations are heterozygous. My daughter, who had the CVT also is heterozygous. A second daughter and a grandson also have the mutations.

Did they remove your ovary because you are premenopausal? I am postmenopausal and I don't think having my ovary out would factor in much since so little estrogen is being produced there.

Were there any bleeding problems with the surgery? We discussed lovenox briefly, but I did my surgery without because of the potential for excessive bleeding with the lovenox.

DFC1994 · January 2010

Ladybug,

I am heterozygous for the mutations. I did not have the factor V leiden.I tested positive for the prothrombin 2,I can't remember the name of the 2nd one but I have 2 disorders.

Yes,They removed my ovary because I am pre-menopausal.I just turned 48 the end of Oct.

I have had no bleeding issues at all. I was on the lovenox 7 days when I first got the DVT along with the coumadin until they got my blood to therapeutic levels(INR between 2-3).Once I was between 2-3 I stopped the lovenox and just took the coumadin.Before my ovary removal in Dec I took stopped the coumadin and started the lovenox 5 days before and took a shot the night before surgery and they gave me a shot as soon as they got me out of surgery in the recovery room and started them again at home the next morning. I had no bleeding problems at all.

The lovenox stays in your system and thins the blood for 12 hours,the couamdin builds up in your system and keeps it thin.Thats how they explained it to me.

they told me it protects me from a clot while off the coumadin. I know I have to take the shots anytime I go off the coumadin and even if I get to stop the coumadin down the road my blood Dr told me I will always have to use the shots since I have these genetic disorders. He said some surgerys would require 21 days of shots. I said I hope I never have to have anymore surgerys after i get the implants done.(smile).

He said if I am lucky enough to some day stop taking the coumadin that I need to always take aspirin to thin my blood.I am lucky the DVT did not travel.

I developed it right after my mastectomies.

Hope this info helps.I am so glad I found someone to talk to that has these mutations.

My sister got tested but hers was neg.

I wonder if my daughter should be tested?

ladybug728 · January 2010

I think it is important for your daughters to know so that they don't take birth control pills, which aggravate the situation. We had all of our family members tested; the Drs. were not the same for each of us, and we had no issues getting the tests, once they heard about the CVT in my oldest daughter.

I am on a low dose aspirin, as I haven't had any personal issues with serious clots. I get superficial phlebitis with IV's, but so far nothing more...

hlya · January 2010

You could try Ovarian Suppression if your tumor is ER+, I remember there is a study saying it's even better than Tamoxifen.

No treatment after surgery?

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