To Tamoxifen Or Not To Tamoxifen: That Is The Question

hawksfansarah

I'm now having shortness of breath symptoms, both when I'm active and when I'm resting.  Is this a common side effect?

Sarah

7of9

Hip hip hooray for new Tamoxifin research...taking longer saves lives. I sure hope everyone can manage the side effects and that researchers can find a way to continue to continue to keep the numbers going our way...

phxsunshine

@ hawksfansarah:  I've been reading over all the posts.  I developed internal pain in between my shoulder  blades and breathing difficulty  last year (after a little over a year on tamoxifen).  I was sent to a pulmonologist because they thought I had COPD from rads, but nope, lungs are fine, it was just a SE of the tamoxifen. It slowly went away after I stopped the tamoxifen. I tried the other 3 AI's (worse SE's) and came back to tamoxifen in October and within only 2 weeks time, here came the back pain and the breathing problem again.    

Omaz

hawksfan - How are you doing?

hawksfansarah

The breast cancer metastasized to my spine in three tumors.

Saturday's CT scan revealed metastases to my lung as well.

So I'm back on tamoxifen.

Wish me luck..

roadwarrior28

I'm so sorry to hear that hawksfansarah - my thoughts and prayers are with you. Are they doing anything else besides Tamox?

hawksfansarah

no

hawksfansarah

They started me on Zometa this week.  My doctor says I'll be on it once a month, forever.

hawksfansarah

I'm going to update this to say to anyone who comes to this thread:  I discontinued the Tamoxifen in December 2012.  The cancer came back in less than a year.  What I thought was a muscle spasm in May turned out to be three tumors in my spine (metastatic breast cancer) in July.  The oncologists said I was at risk of a compressed nerve and paralysis if I didn't act quickly.

I restarted Tamoxifen.  I went through 10 days of radiation.  Now I am on Zometa.  The doctor says this treatment plan is forever.

So, if you are in a position similar to mine, reconsider tamoxifen.  The alternative is worse.  Please note that breast cancer, if left untreated, travels to the spine and lungs, then the brain and other organs.  Save yourself the misery I put myself through.  And don't bother with TCM and acupuncture (been there, done that, didn't work).

bdavis

Hi Sarah,

I am so sorry to read this... I still feel chemo would help you at this point. What ever happened when you asked your doctors about chemo? Second, I do feel you were poorly diagnosed and treated. If I were you I would certainly be inclined to speak with a lawyer about malpractice, especially with your first set of doctors. I know it doesn't undo what they did (or didn't do), but perhaps it could prevent their negligence from affecting another patient.

Stage 4 is terminal but it can be managed. I would think chemo may be a part of that regime.

blanviper

Sarah-

I agree with bdavis. I don't think a responsible surgeon or onc would have recommended no further treatment with dirty margins on your first surgery. I know my surgeon told me that if my DCIS turned out to be too close to my skin or chest wall and that they could not get clean margins that I would at least be getting radiation, if not chemo. That you had neither with dirty margins is surprising and no wonder that doc is concerned about you suing. It sounds like they didn't get it all out in surgery and the path report indicates that. In that case, Tamoxifen may or may not have been able to prevent recurrance/mets. Lower odds of preventing mets with dirty margins since the cancer was already still there. I would seriously considering suing.

AlaskaAngel

Sarah,

Having a surgeon at initial surgery who is worse than worthless is devastating, because it takes so long to realize you are a victim, and all the while you are trying to make good decisions and yet you can't.

This is not just a situation of a lousy surgeon. It includes the facility where no one did whatever was necessary to help you get adequate treatment once they knew about it. Multiple professionally qualified people in your situation HAD to have been aware of it at the time, even though they were not the surgeon. The difference between your situation and mine is that in my situation, the surgeon flubbed up prior to surgery, during diagnosis. Then a young female doctor who was new on staff took the risk, and spoke up in my behalf.  Her protest was buried officially by the facility, but she was in charge of my care and I changed facilities and was handed over to a mature independent practice physician, who saw to it that I was sent to a quality major cancer center for my surgery. Today, 12 years later, I'm not in your shoes.

The question of taking legal action is a difficult one because you have plenty to deal with as it is. Only you can know how much you can handle. Taking legal action, even when you are "right", is very draining.

In my case I was in the throes of treatment with chemotherapy, but because I was aware of several others that the surgeon had also given similar "care", I did pursue legal action against both her and the facility. I did not succeed because it was not possible to prove damage without recurrence of cancer because of the unpredictability of cancer, and one has to prove damage. I could not prove damage because I could not afford the costs involved for having another surgeon testify against her, and the legal system put me in the position of having to file the suit within the time limit of my jurisdiction's statute of limitations in order to preserve my right to sue at such time as I might suffer additional damage. So I filed to preserve that right.

For most early stage patients IMHO chemotherapy is a huge waste of time and resources, but in a case like yours that has been so mismanaged for such a long time, you might benefit from it or it could just add to your misery. It is a gamble, and at best, a quality institution could provide you with an educated guess about its worth for you to consider.

AlaskaAngel

hawksfansarah

Thanks for your kind words and advice.  I did end up speaking with a law firm, and they said it's pretty clear that my first set of surgeons were negligent, however, I was contributorily negligent for not taking tamoxifen, so this case might not be worth pursuing.  They did tell me they would have an oncologist they consult with look over my file and let me know.  So it seems to kind of be a bust at this point.

hawksfansarah

I didn't take tamoxifen because after my experience with my surgeons, I was very uncertain about my whole "team" of doctors, and didn't trust them to spit on me if I was on fire.

Ha, and I later discovered.. it's not just that the margins were dirty, actual breast tissue was still left in my body after the mastectomy.  My (new!) surgeon told me that after my fourth surgery.

bdavis

hmmm... I understand the negligence on your part (as the lawyer said), but had your doctors given you a better explanation of its importance, or given you more faith in the process, perhaps you would have taken it. I also understand if it isn't a shoe in maybe its not worth the effort. But there is also no saying that had you taken the drug that it would have mattered. Leaving breast tissue behind and dirty margins and not recommending chemo are all blatant signs of negligence.

hawksfansarah

Update: they found a cyst on my ovaries. Did the ovarian cancer tumor marker blood test, waiting for results. Scheduled for removal of my ovaries in two weeks.

It really feels like my life has fallen down the rabbit hole.

roadwarrior28

are the cysts that large? I'm curious why they recommended removal?

I have constant cysts

hawksfansarah

The cysts were not cancerous, probably a side effect of the tamoxifen.

After surgery I was put on Arimidex and Xgeva (for bone metastases).

That's not working right now, the cancer is spreading, I have fluid in my lungs (1.2L!) and new nodes under my arms and at my neck.

Lucky me my doctor told me he's a generalist, and maybe I should see a specialist instead. Wish he'd told me that two years ago when I first became his patient.  

He's upset I complained about his office publicizing my cancer status without my consent. I told them that telling everyone I have cancer damages my personal and professional life. The office manager and doctor just said, "Why do you feel that way?" in response.  So.