Treatment in US for third-world country resident

gozzo87

Hey,

My mom was just diagnosed with the Stage 1 breast cancer. We are in the process of collecting all the required tests to figure out what kind of operation and treatment is necessary in her situation. The problem is that she lives in Ukraine and the medical field is not that advanced over there. We are exploring the alternative of doing the operation and/or post-operational treatment in US.

How reasonable is this? Where should we start? Are there any programs that we could benefit from to make the costs manageable?

Thanks for any help!

Max

WC3

I've heard of targeted therapies for HER2 positive breast cancer being obtained in Kenya and India so I would be surprised if any chemotherapy or targeted therapies she would need were not obtainable in Ukraine. I imagine it would also be cheaper there.

As for the the surgery, you would have to talk to the surgeon and hospital about paying out of pocket.

I think I would have your mother have a consultation or two here and then see if what they recommend can be obtained in Ukraine.

Mquara

Costs here for medical treatments are insane. There are cost savings measures for people without insurance but I am not sure they would be available for somebody deliberately choosing to fly here for care etc. If your mom was diagnosed with a really aggressive cancer, or was late stage etc I can see just throwing caution to the wind and coming here. Stage 1 is very early and very treatable though!

Start by getting her treatment plan from her doctors and then come here to the board and compare to what is offered here to other people with the shame stage/grade cancer to see what the difference is. You might be surprised.

pupmom

Have you checked into Europe for treatment? It's a lot closer and you wouldn't have to deal with our, current, insane immigration system.

edwards750

I agree. I know you want the best for your Mom but since she is Stage 1 I don’t think a trip here would necessarily make a difference given it’s early stage - which is good by the way. Better early than late stage.

Medical costs in my neck of the woods in Tennessee are high but less expensive than some other states. I have health insurance so I have no clue what out of pocket expenses would be. Our insurance is BC/BS and like most insurance companies doesn’t cover the full cost of treatment so until you reach your deductible there is always a balance to pay.

I was Stage 1b, Grade 1 and had a lumpectomy and 33 radiation treatments but this is not a one size, fits all disease so her treatment might be different.

Diane

gozzo87

Thanks for the answers! This is already very helpful.

I think that we would definitely start with obtaining the lab-work in Ukraine and then trying to consult as many doctors as we can, possibly including the ones in US. How would we find a good doctor for this? Do you guys think that there is a database that we could use to reach out to doctors that are willing to consult online?

Ukraine indeed might have some targeted therapies available, but you really never know the overall quality of the treatment. I've heard from multiple sources that chemo and radiotherapy in Ukraine is still Soviet-level quality and should not be trusted.

The reason why I got very alarmed is that the most "advanced" clinic in Ukraine (with headquarters in Israel) claimed that Stage 1 breast cancer has 70% survival rate, while everywhere I read online about it, the number is very close to 100%.

My sister lives in Germany and have been asking there and it looks like an operation there would cost $50K + $7K for each of the radiation treatment. Given what Diane wrote about 33 radiation treatments, this is not a very manageable solution.

pupmom

gozzo87, if your mom were to have a mastectomy, rather than lumpectomy, she probably wouldn't need radiation. Outcomes for lumpectomy + radiation and mastectomy are very similar.

gozzo87

Thanks, we are really hoping for lumpectomy though. She is still very young (58 yo) and mastectomy would not be desirable.

pupmom

I understand. Best wishes!

LoriCA

gozzo87 perhaps the difference you are hearing in survival rates is due to the difference between the 5-year survival rate and the overall survival rate. Not to be a downer but the 98-99% survival rate often quoted is the 5-year survival rate. The 70% survival rate you were told does closely correspond to what my research says would be the overall survival rate (due to the percentage who later metastasize, but are still alive at the 5 year mark). Certainly if they are quoting a 70% 5-year survival there is reason to be concerned, but maybe they are just being more up front and talking about the overall survival (which is rarely discussed here in the US for various reasons). it is important to know which survival rate they are talking about before being overly concerned.

Have to say I agree with the recommendation to look into European countries - whatever the cost is in Europe you'd probably need to multiply by a factor of 5 for the US. But the Johns Hopkins Breast Center does on-line consults and has a concierge service for international patients (see the tan box near bottom of page). https://www.hopkinsmedicine.org/breast_center/seco...

Looks like MD Anderson will also do consult on-line or by phone. With as big as they are, I'm sure they have much experience with international patients too https://www.mdanderson.org/for-physicians/refer-a-...

Best wishes to you and your Mom

gozzo87

Thank you *so much* Lori. This is very helpful. I'll try to contact Johns Hopkins and Dr. Anderson.

LoriCA

You are very welcome, please let us know how it goes. I'm sure the information would be useful to others who are interested in knowing.

nye1980

You might consider Asia for treatment. I live in Bangkok, Thailand and was treated at one of the best private hospitals (I had private insurance) and currently continue my follow-ups and medication at a teaching/public hospital as insurance no longer covers this part of treatment. I consulted with doctors in the States about my treatment and it was exactly the same as I would have gotten in the States.

MelissaDallas

You can always read the NCI Treatment Guidelines to see if what is propsed where she is meets them

WC3

Survival rates depend not only on the stage but the receptor type, and also the time frame. There are also different treatments for different stages and receptor types.

moth

OP, you can put your mom's stats into one of these validated calculators and get a specific probability result.

http://www.predict.nhs.uk/predict_v2.1/tool

http://www.lifemath.net/cancer/breastcancer/therap...

While most women are diagnosed with stage 1 or 2 breast cancer, about 25% will eventually die of metastatic breast cancer recurrence. Breast cancer recurs and as pointed out above, it's way more complicated than just the stage - size of tumor, type of cancer (invasive ductal, inflammatory, dcis, etc etc), hormone receptor status and grade are some other very important factors which affect outcomes.

Honestly, unless you're a millionaire I'd give up on the plan to come to the US for treatment. Getting a visa would require showing proof of ability to pay and the treatment costs are really very high. People in the US go bankrupt over medical costs

I do agree with checking out the treatment protocols that would be applicable and then finding a local oncologist who would follow them.

One thing you might want to pay for is (if your mom's tumor is hormone receptor positive) Oncotype DX genomic testing. You'd need to get a sample of the tumor properly prepared in the pathology lab and sent to California to the company that does the testing but then you'd get a recurrence score and that would help your oncologist and you decide whether chemotherapy is warranted.


One positive thing I'd like to leave you with: "Physical activity can reduce breast cancer mortality by about 40% and has the most powerful effect of any lifestyle factor on breast cancer outcomes." <-- This is one simple and hugely powerful thing your mom can do, with her friends' and your family's support. Exercise, lots, aerobic and weight training.

Other lifestyle modifications which are evidence proven to reduce risk of recurrence are summarized in Box 3 of this Canadian 2017 study http://www.cmaj.ca/content/cmaj/189/7/E268.full.pd...

best wishes to you ~

gozzo87

Thanks moth for detailed reply. This is very useful indeed. The calculator tool helped a lot to understand risks.

We got some labwork today and it looks like we have the following condition:

luminal b type breast cancer; estrogen receptor positive; progesterone negative (ER+; PR-), HER2/neu - negative (0).

Currently two surgeon that we were able to reach out say completely opposite things: one says that we need to remove only the tumor and the other says that everything should be removed (full mastectomy including the ovaries). I understand that the latter one just want to be certain and increase the chances of survival, but we would like to make a more educated decision. I'm looking at the NCCN guidelinesfor this case, but is there anyone on this forum had a similar lab results and decided to do lumpectomy only? What is your experience?

We have the tumor samples available, but sending them to Cali for the genetic test would take some time. We definitely want to do it, but do you think we can postpone deciding whether to do chemotherapy till we have the genetic test results?

Thanks!

Mquara

For comparison purposes:

I was Dx at almost 47 (I am 48 now)

4cm Grade 3 Stage 2b invasive ducal carcinoma. 90% Er+, 30% Pr+ Her2- luminal b. T2N1miM0. After surgery I had 1 lymph node with micromets and 1 with an isolated tumor cell

I had surgery first, a lumpectomy. Followed by 4 round of chemo which was taxotere and cytoxan. 7 weeks of rads which was 28 whole breast and 7 boosts and I am now on hormone therapy which is letrizole. Letrizole is given to postmenopausal woman, I was not in menopause so I have a lupron shot every 3 months to suppress my ovaries. Thus far nobody has said anything about having any additional surgery including no mention of having my ovaries removed.

My mother passed away from breast cancer at 54 but my genetic tests were negative. Is the Oncotype test available where your mother is? I’d try and get that done, that will help decide if chemo would be beneficial or not.

moth

gozzo - see my signature: I was ER+/PR-/HER2- on biopsy. Later after my surgery and the actual tumor being re-checked my dx changed to "triple negative like" as my estrogen score was very weak and the Oncotype also lists me as ER-/PR-. Your pathology report should indicate how strong the ER+ score is. It's usually listed as an "Allred score" out of 8 or it will list what percentage staining there was.

I had a lumpectomy (also known as breast conserving surgery), sentinel lymph node biopsy, and plan to do radiation. You can always change your mind after a lumpectomy and go back to do a mastectomy if you get more information. I made my surgical decision before knowing I was essentially triple neg. I also didn't have my genetic testing results when I had surgery.

According to my provincial cancer agency guidelines, lumpectomy + radiation has the same survival statistics as a full mastectomy. That's because a mastectomy can prevent localized recurrence (ie coming back in the breast) but it can't prevent metastatic recurrence, which is the type that is eventually fatal.

Whether to remove ovaries is a separate issue. If the tumor is strongly ER+ and the woman is premenopausal and esp if they also have genetic risk, it is often suggested. But it can be done separately, at a later point in time.

The Oncotype DX is a 'genomic' test - it's different than a 'genetic' test.

The genomic test is to test the tumor and assess its characteristics and probability for recurrence. It's usually done with a sample of the tumor after it's been surgically removed.

The genetic test is done on the blood or saliva of the person, and it's to determine if they carry any genetic mutations known to be linked to an increased risk of breast cancer.

In terms of timelines, with courier airmail service I'd expect that getting your sample to California wouldn't be that long. Mine was shipped there from Canada. They report results quickly - I think 7-10 days. My genetic test took about the same time & again the company that did mine was in the US.


If you're interested in timelines & how fast you need to make decisions, there are some evidence based studies on optimal timelines: 'Putting the results of these studies together suggests that it's best to do surgery within about 60 days in patients not needing chemotherapy first, and that for patients with disease lacking the estrogen and progesterone receptor it's best to start chemotherapy within 90 days of surgery."

My cancer center said they try to start chemo for everyone within 90 days, regardless of hormone receptor status. https://respectfulinsolence.com/2016/01/12/breast-...

You don't want to delay too much but you DO have some time to make decisions. After surgery, you usually don't start chemo right away. So you could have the surgery, recover 4+ weeks, during that time send the sample to California for analysis, get results, and make final decisions about chemo then.

best wishes ~

gozzo87

Thanks moth for the detailed answer and sorry for the delayed response. There are too many things happening and it is hard to keep track of everything.

My mom is postmenopausal and her estrogen receptor is found to be positive in 100%.

We have decided to go for a full mastectomy of the left breast. We just got the patogistological analysis back and it looks like 2 out of 11 lymph nodes had metastasis 6mm in size.

Here is her full diagnosis: pT2 N1а(2/11) cM0, LVI 1, Pn0, R0) (ICD-O 8500/3)

We are trying to get the second opinion right now on how to continue with the treatment (whether to do chemo essentially).

I already contacted John Hopkings and tomorrow will try to reach out to some other hospitals.

Amica

Moth

You are just a treasure-trove of useful information!

I found the article on Lifestyle Modifications very pertinent and interesting.

Thanks for all the useful info!

Amica

gozzo87

Hey,

Just wanted to share an update for our situation. My mom got mastectomy of her left breast along with 11 lymph nodes removed. 2 of the lymph nodes got metastasis up to 6mm in size. She is recovering form the operation, but the process is slow. After 1 month, the lymph fluid is still discharging and the wound is healing very slow. This is quite unfortunate, since we can't start radiotherapy before the wound heals completely.

We also just got result from Oncotype Dx (thanks moth for providing the reference for it!!). It shows the recurrence score 11 (which is very low). However, there is a disagreement between the doctors on weather to trust this test. Some say that given Oncotype score, the chemo would inrease the survival rate by 1%, some say that chemo is still needed, since the lymph nodes were affected. What do people think about this? Should we trust the oncotype?

Thanks,

Max

moth

Max, thank you for updating. Sorry to hear your mom's recovery is slow. I hope she's not in pain and that her incisions will improve soon.

Regarding the Oncotype - I've heard that if needed you can contact them directly and get their input.

Oncotype has research on node positive cases as well. If you go to this page, and scroll down to the yellow words "node-negative and node-positive cancer" & then open the section "Node-Positive Prognostic Clinical Trial Results" you'll see the results from the TransTAC study. The 1-3 nodes recurrence rate is a bit higher than node neg but only a tiny bit.

https://www.oncotypeiq.com/en-CA/breast-cancer/hea...

What does your mom think about chemo? It's a difficult decision... and one way to think about it is what would she regret more in case of poor outcomes in the future: either a recurrence or bad side effects from chemo. Would she regret doing chemo if she had bad side effects or still be glad that she tried to throw everything at it? Or if in the unfortunate event of a recurrence, would she regret not having done chemo or still be at peace about having chosen to avoid potential side effects? Whatever she chooses, it's best to never look back so make the decision and be at peace with it.

With that low a score, I personally think it wouldn't be irrational to skip chemo & put all the efforts into hormone blockers and regular vigorous exercise.

best wishes ~

moth

Oh, I have one more link for you about the Oncotype recurrence score & lymph node status: https://www.ncbi.nlm.nih.gov/pubmed/28243896