advice from my abc friends for discussion with doctor

could you beautiful ladies please give me your feedback?
I just had an mri done for pain I have been having in my right leg , they also had me just get a regular x ray of my right leg. This pain is not constant, usually in evening and is kinda like a spasm, sharp like throbbing pain. Come to find out nothing found.I am new to this site and after reading your blogs I think I need to schedule an appt, (in witch I plan on doing on monday) to see my oncologist.
Besides this recent mri on my leg, it has been awhile since I have had a scan. My treatment has been basically tamoxifin and every six weeks zometa, I had my ovaries removed in april since then, they took me of tamoxifin and now on femara that is it, dr refers to doing a "tumor marker" in which they sometimes he says high whatever that means and thats it never mentions doing any other tests or scans. Does this seem right to you? If I am not having scans how does he know what is working? How does he know that I am not getting more and more mets everywhere. He also made a comment to me within the last 6 months, like did you ever think that you would still be alive 3 years later? my answer is yes I am 41 years old! Oh and how bout this one does this seem right? A year had went by and I received something in the mail in regards to my yearly mammogram, I took it with me at my next dr's appt and he said not to worry about having any more that it didnt work the first time! Are you ladies still having mammograms? I did take the gene test and it was negative, I was told that if it would of been positive that we would be having a discussion on removing my left breast. What I have told you above has been my treatment for sometime, I have been diagnosed three years now November. I get the impression that he thinks that this horse is already down and is not getting back up, and is basically just waiting for me to get worse, is this how its supposed to go? Can you give me some ammo for my doctors visit? I have waited for three years to communicate with someone that is going threw what I was. Please help!

By StickiVicki
Posted November 1, 2009 at 7:41 am
Report post

It is really scary to be left with no information or idea of what is going on, or what they plan to do. It sounds as though you have a medical team who don't want to communicate with you, as I did until I finally lost it and threw a hissy fit.

I now have scans every six months, CT and bone, and feel as though I have an oncologist that will listen. I don't quite understand the American medical system as it seems to be rather fragmented, where as in the UK we are treated at one hospital by a department that is connected.

First I would say that you need to talk to your oncologist and ask what it going on with the MRI scan and how is he going to tell you what is going on, on a regular basis? Maybe you need to ask to have scans on a regular basis (does your insurance allow for this?), but do remember that these are procedures which, in themselves, can cause cancer, so they should not be done too often.

Secondly I would get a second opinion. I went to the Royal Marsden in London for a second op and they suggested a different treatment. When I got another onc in Southampton I was able to discuss this other approach with him, and eventually decided to stick with what I on as by then I knew that it was working from scans I had done 13 months after the initial ones they did to diagnose how far the cancer had spread when they finally realised that it had (they didn't listen before that, which was part of the reason for the change of onc).

The Royal Marsden approach was to put me on chemo with herceptin, but since the zometa and tamoxifen (now Femara) is working I would prefer to hold chemo in reserve at the moment as it weakens your defence systems.

I try to follow the Plant Programme (Jane Plant's Your Life in Your Hands) which is a dietary approach which cuts out dairy (full of hormones) and red meat. Try looking into this sort of approach to back up your conventional treatment. Try www.canceractive.com as a starting point.

The pain in your leg might be due to a misalignment of your spine pressing on a nerve. It would be worth finding out if it would be possible to have some physio which might help with this, but do ask an expert and don't go to anyone who is not trained to deal with bone mets. Chiropractic or Oestopath treatment could break bones! Your onc may be able to suggest some form of treatment if they don't think that it is directly caused by cancer.

Good luck, and I hope you can get the information which will make you feel happy with your treatment plan. Vicki xx

By maxnan
Posted November 1, 2009 at 9:49 am
Report post

Steph - it sounds to me that they were possibly concerned about a blood clot. Where in the leg were you having pain - lower leg? Are you still having pain since the MRI?

I'm seeing the general consensus among doctors is to not do so many scans. I know how you feel as I was also on Tamo. and then Femara and then Faslodex and during this time, I got very few scans. The tumor markers that he's talking about are a blood test that measures the amount of certain things in your blood associated with cancerous tumors. Although they can be used as a guide, and for some people they do seem to coincide with increased mets, they do not for eveyone (and I'm one - I'm stage iv with mets in most of my bones and they have NEVER gone about 52.) But for some others, they can be a good "guide" and the docs are now relying more on how you feel and what pain levels you have. I can remember having this very same discussion with my Onc and she told me that I will have symptoms before anything shows on the scans. However, for my own peace of mind, I insisted on the scans and then would be relieved for another 4+ months. Looking back on it now, I wish I could've just lived my life and not lived it waiting for scan results, not to mention the amount of radiation and contrast dyes put into my system. Also, Femara is a good drug, that can work very well for many women for many years -- that is a GOOD thing! Believe me - if it's working for you, you don't want to go onto any further treatments until needed. And Zometa is the standard as well and is also a powerful treatment.

I think the biggest issue here is the lack of communication with your Onc. You need to feel that you are in control of this disease (as well as him) and you are kept informed and decisions that are made are basically yours. I really think that you need to have a discussion with him -- write down the questions that you have and go through each and every one of them. And if at the end of that you still don't feel comfortable, consider changing your Onc or at minimum, go for a second opinion.

I do think that he was telling you how pleased he is by the fact that 3 years after Stage IV diagnosis, you're still doing very well -- because as a doctor, when he looks at the "statistics", 3 years is the average amount of survival. We all know that statistics are just numbers and as evidenced on this board alone, it is just not accurate, but I think that's where he was coming from.

Good luck and let us know how it goes.

By TellMeWhy
Posted November 1, 2009 at 10:11 am
Report post

Steph,

I just had the same experience with my Onc. Friday. I brought up why am I only getting a scan once a year, while some people do every three months. Her reaction was the patients normally will know when something is going on in their body first. She uses the CA27-29 as the tumor marker test. And she said that not every pain is cancer related. Her main concern is "how are you feeling?" That's what they go by. I told her that Drs need to tell their patients more info, like being stable is good. Or, things look good. Something positive, which I never got. I did find it strange when she said that sher hates to put her patients through the anxiety of scans if they don't need them. She is very conservative in her testing, and feels that some places over do it.

Everyday, I try like Hell to judge myself on how I feel. I tell mydelf that these aches and pains are from getting old, or it's from a misalignment of my back pressing on something and that it isn't cancer. Most of the times it works. But sometimes.......I'm ready to pack it in.

Just hang on to us. We're all in the same boat.

inda

By ZolaDex
Posted November 1, 2009 at 11:07 am
Report post

Hi Stef
Sounds like communication could be better with you and your doc. You might say that to him: "I'm confused about this treatment plan, could you clarify what you are doing and why?"

You might also to ask the doc to go over standard practice of care for people with mets. Since there is no cure for metastatic breast cancer, treatment generally starts with the least toxic approach. When Taxoxifen stops working, then you move on to something else. Because you are now menopausal, AIs are an option. If you still had your ovaries (depending on your menopausal status), Tamoxifen would be the only hormonal therapy option.

Tamoxifen is notorious for leg cramps, but if you are no longer on it, hard to say what that could be. As your estrogen level would have sharply declined following having your ovaries out, maybe you are having a potassium/magnesium deficiency.

I had the same question re a mammogram. If I understood correctly, I won't have one, likely because I will have had PET scans and MRIs, which are stronger imaging tools. I was diagnosed in July and will thus start with having scans every 3 months, but that will likely change.

If you did carry the BRAC1/2 gene, you would have a higher risk for ovarian cancer and I believe also recurrence in the other breast. As you don't, might as well keep that breast!

As others said, a second opinion could both bring peace of mind and a better communicator.
Hang in there.

By kat47
Posted November 2, 2009 at 10:16 am
Report post

Hi Stef,
When I asked my doctor about my 6 month mammogram, after being diagnosed with mets in 2008, he replied, "Well, that horse is already out of the barn." So, no, I am not having mammograms anymore.
kat

By lauriem
Posted November 3, 2009 at 2:39 am
Report post

Could the leg pain be from a hip or leg nerve? I had the pain you describe and it was resolved from medical massage in just a few sessions. They only work on the section in pain...and my insurance covered it when it was ordered by my chiropractor...just a thought and may be worth a try.
I'm with the others....never hurts to get a second opinion from a different doc.

Welcome to Inspire!

Explore topics in this discussion:

6 replies

Add to the discussion

Group leaders

You