If you are not Stage IV but have questions, you may post here

Hugo -

My US doctors found a tumor in my breast in December of 2015 by mammogram, 3 days before i planned to leave on vacation to Peru. I decided to go to Lima and continue the diagnostics in Lima. I was so worried. I couldn't enjoy my vacation unless I was doing something to understand better what was going on. I went through the whole diagnostics process and got a treatment plan from Aliada Contra El Cancer. I saw Dr. Felix Cisnero Guerrero for imaging. I saw Silvia Falcón Lizaraso for oncology.

In the US, I have good insurance and access to the best care. The oncologist here re-did all the testing that was done in peru and gave me her treatment plan. As a result, I may be one of the few people with breast cancer who can directly compare the peru system and the best of the US system.

They are different. There were small issues that I can discuss with you further. But Aliada Contra El Cancer works with Johns Hopkins University, one of the best cancer treatment centers in the US. They follow the same treatment protocols. In addition, Aliada is associated with European hospitals and research. The US system is good, but it can be narrow minded. There are treatments that might work that doctors here are not allowed to consider. Aliada has access to both the US treatments and the European treatments.

The biggest difference is that here I have access to Ibrance, which is a new targeted therapy. Its just not available in Peru. But most of the treatment protocols available here are available in Peru. The treatment protocols Dra Falcom recommended were very solid well tested protocols that cure many people. I will pursue the protocols that Dr. Falcon recommended if this new treatment does not work for me.

You certainly will not find the care that Aliada Contra El Cancer provides here in the US at the price you pay in Peru.

If I did not have insurance, or I was not estadounidense, I would not hesitate to go to Peru for my care. Money is an issue. So is culture and language. You have to take everything into account and put yourself in the strongest overall position. I suspect you are by far in the strongest position seeking care in Peru.

At the same time you can follow these boards and compare the advice and treatment options you are being offered just to be sure. Please feel free to send me a private message (hablo español) if you want to share more details with me and discuss this further.

Dra Falcon was the first person who told me with confidence that I had a lot of hope. I hope that you have a chance to meet her because she is remarkable and she is right. But you need to hear it from her.

>Z<

bosumblues

So sorry for your worries. I hope your concerns do not turn out to be mets. My bone mets have been tricky. My hip and pelvis mets followed the rules: progressive pain worse at night and rest. My rib met did not follow the rules: worse with movement and sharp pain that would come and go. So if you are worried check it out. What I have learned on this thread is that each person and each met is very individualized. I wish you peace.

Mary

No, mets don't necessarily cause pain. Eventually, they usually cause symptoms, in my case a pleural effusion. They probably are waiting to do a CT/PET scan until they are finished with your nodes. You don't necessarily have mets just because of the lymph node business and there is nothing you can do about it anyway. So try and have a great weekend, because worrying won't change anything.

Thanks for your very kind replies! I agree with BosumBlues....your advice and support is so much appreciated!

It's such a hard place to be in right now. Being full of fear. Your information and success stories help us get thru this - by giving us hope and letting us have a safe place to express our fears....

Hi ladies.

I have a question. Since my treatment with Taxol my legs have had crazy weird symptoms. I had months of tingling and crawling sensations and then almost a numb feeling in my upper thighs. Now for the past 2 months I have been experiencing pain vs the tingling in both femurs and up into my right hip and down into my tail bone. It hurts at night, I wake up in painand during the day it feels like I have worked out my leg muscles really hard and my hip is achy to the touch. I have been doing a lot physically with moving into our home but it isn't going away. I had my last chemo Nov 2014 and had a pcr with triple negative breast cancer. I am trying to avoid scans like the plague but understand I may need to bite the bullet. Have you ladies heard of anyone that had a pcr getting bone mets with triple negative? I know anything is possible. Thank you for all that you do on here and the wisdom that you give.

Blessings

SA- me too. Last chemo a year ago. Legs are getting better but still achy and need to stretch. MO said it was taxotere. Keep moving and hoping tomorrow gets better. I was hoping for a solution

Hi again everyone,

I posted about a month back and got incredibly postive and supportive feedback. Short story: recent local recurrence, CTprior to chemo revealed an enlarged hilar and mediastinal lymph nodes that required further evaluation, as well as a "significant" lesion on my left lower lung (I'm left-side dx) that could not be ruled out as mets. My MO said we'd rescan and if the lesions are gone he'll assume they were Mets and my stage will change. If they're the same we'll know they're not cancer-related.

Had the CT rescan last Friday (three days after my 5/6 TC), and picked up the report today. Don't see my MO for another two weeks. The report compares and contrasts this CT with my previous CT. Both mediastinal and hilar lymph nodes have resolved, and the "significant" lesion on my lower left lung is now gone, as is the 5mm nodule in my right lung. The only thing that remains the same is an area on my left lung that corresponds to and is probably radiation fibrosis.

So - they resolved. Hmm.

But the report also notes the following: "The only pulmonary nodule identified is a focal area of pleural thickening posteriorly in left lower lobe measuring 8 mm. This is new."

So what Ihad before went away (with chemo?) but a new lesion appeared and grew to 8 mm in 3 months? At this point I'm not concerned - it is what it is. It'll be a long two-week wait.

Any thoughts? Thanks for listening.

If you don't already have cancer, they generally ignore pulmonary lesions in CT scans. They are often not cancerous.

Also, depending on a lot of things, the accuracy of a CT scan is +/- 5mm. I don't believe they can meaningfully track changes in size of a tumor or lesion that is close to the limits of the equipment. This is a conversation to have with your radiologist; however, from what I read, they can be more confident of their equipment than they should be.

My main point is that I hate to see people take an emotional punch to the gut over small changes in these cans. The good oncologists need to see significant progression over time and take many factors into consideration before the call a change progression.

>Z<

I'm a little worried. I don't know whether I should take this incident seriously. Three days ago I woke up and my whole body was convulsing in ever direction. I couldn't get my arms, legs, back, hands, feet or head to stop moving. I got scared and closed my eyes and told myself to make my body roll over. It took me about 30 seconds to roll over and everything stopped. My heart was beating so hard and my muscles felt exhausted. I calmed my breathing by taking slow breaths. Now, I'm worried it may happen again. My sleep pattern is normal and I don't eat after 6 p.m. Just wanted to get some advice, because I sure don't won't to have to see my doctor over this. Any advice or suggestions would help greatly.

Hi kdrez,

I hear you about not wanting to go to your doctor and trying to figure this out on your own. And to forecast whether it's likely to happen again.

Feelings aside, consulting your GP/PCP would be a good next step for you. This sounds more like a problem for a medical professional who knows you than for a support group whose members aren't aware of your complete medical history and situation.

Your episode could signal many different things - some you want to rule out, others you may need to know about.

Hard and scary, but worth following up on with your doctor.

Healing regards, Stephanie

Nancy - the pleural thickening is just scar tissue if you will. Your lungs are surrounded by a double layer membrane called the pleura which was probably damaged by whatever was there. When you think about it, 8 mm is only a little more than 1/3" (8/25.4), not a real big scar.

kdrez, what a scary thing to have happen! I have no advice beyond what's already been said, but I'm very glad you made an appointment. I know it's worrisome, but I would be fearful of it happening again when you are not in as safe a place as your bed. Hopefully it has nothing to do with bc and was maybe some sort of serious electrolyte imbalance, but it absolutely needs medical attention, and I would be very careful about your activities (no hiking on steep inclines or swimming alone, for example), and I would even be concerned about driving until you get evaluated. I'm not so sure I wouldn't have asked for an immediate appointment, especially if there are clues in your system now (such as wacky electrolytes) to what happened. Did you let your doctor's office know what had happened? Please let us know what you find out. (((Hugs))) Deanna

Better treatment options in Mexico. USA still only uses surgery, chemo and radiation. Not very good options since

chemo and radiation almost always create recurrence a few years later. Better to use an integrated approach in

Mexico.

Many doctors???? Sadly, there have been one or two in FL that I recall reading about -- cases that made the national news involving unnecessary tx for what the patients were told were skin cancers. But I don't think I've ever heard of anyone in recent years in the US totally mis-dx'd for bc, although I suppose you could argue that in some situations DCIS might be treated more aggressively than necessary. But your assertion is not something most women, especially newbies, need to worry about. I absolutely agree with you about second opinions, but not for the reason you give.

As far your post just above that one -- if you or anyone makes a statement about recurrence rates, you need to back them up with research and links so that we can decide for ourselves on the credibility of your sources. As far as I know, the acknowledged recurrence rate for bc is around 30%, which varies significantly depending upon each patient's initial stage and other aggressiveness factors. "Almost always create recurrence" is a totally ridiculous thing to alledge, as the majority of women who are treated for early stage bc don't have recurrences.

And by the way, I am extremely pro integrative and alternative medicine. But allopathic meds -- not DIM nor apricot kernels (both of which I've used in the past, by the way) are keeping me and many other women here alive. Our doctors are well aware of the shortcomings of chemo, and thank God for the researchers who are working hard to bring new immunotherapy and targeted meds to market to replace them. They're my heros!

Scared67,

I had an extracapsular extension along with 20 positive nodes. I've also had every test in the book and there's no metastasis. I could not believe, that with the biopsy findings I had from the surgery, there would be no mets. But so far so good - no mets.

It took every single test they had and I insisted on all of them, to reassure me. Fortunately it all worked out and I can move forward without fear for awhile.

I hope the same for you.

cb