Latest prognosis : I just found out... - My Breast Cancer ...

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Latest prognosis

needingamiracle profile image

I just found out that my oncologist told my hubby that I have few months left. I have 2 young kids and I'm not ready to die.

I live in Australia. I currently have 2 options - go back to my own country for treatment along with family support or go to Mexico for treatment without having my kids with me. Concern about Mexico is we have just budget for treatment, what if I needed to be hospitalised and surgery (extra financial stress) and without family support. Given my prognosis of few months, hubby is even more worry if something really went wrong with me in Mexico it will be a total mess. Dr in Mexico seems to be more convincing. I am so lost.

31 Replies

Hi, I am very sorry to hear what you are going through. I reckon it came out of blue and your cancer was found late, which leaves you no time to digest.

The uncertainty on finance and outcome that comes with going to Mexico can put stress on you. You probably get more informed if you post here what it will be involved and someone who has some knowledge about it may have something to share with you. Seek your doctors advice on it too.

I believe developed countries like Australia has a comprehensive package for cancer care.

Is there any financial motive for the Mexico side to be convincing? Get an effective treatment is paramount important, just need to be more informed.

I just felt that I needed to write my thoughts on your post.

Hi, very sorry to hear your prognosis. I am sure you are desperate to find a treatment. It is not unusual to seek out doctors or centres that are offering promising new treatments to cancer, but please be careful in proceeding with any of these. There is no reason why treatment in Mexico would be better than in Australia. It is possible that the treatment is experimental or unproven, and I would have concerns about the ethical processes that are being followed in Mexico. If you do make inquiries, then discuss any details with cancer specialists in Australia before making a decision.

I'm sure you will find support with cancer care groups within Australia that will keep you closer to your family, who can be a positive influence in fighting cancer. Wishing you all the best.

Wow! At the very least, I think you need a second opinion from an oncologist attached to a well-known hospital or research institution.

Keep in mind that even the best researcher cannot really predict how long someone has to live. Each individual is indeed unique. You need to know what sort of cancer you have (the oncologist should have done a biopsy), and which organs are affected.

I assume that you cannot be suffering from early breast cancer because no one dies from that. You probably should join SHARE, a Health Unlocked website for those with metastatic breast cancer. There, you'll meet others who were once given an extreme prognosis, and are still living, years later.

I am hoping that your situation will turn out to be not as extreme as it seems now.

Warmest wishes,

Cindy

Hi, I am the breast and metastatic breast cancer helpline manager at SHARE Cancer Support. I needed to chime in here because you made a statement that is not really true. People do die from early stage breast cancer. Early stage is considered 0, 1, 2 and 3. Unfortunately 30% of early stage patients will go on to develop metastatic disease.

Hi Dimsdale,

P;ease explain your understanding of "early" breast cancer, and how those with no metastases die from it.

My early breast cancer was Stage 2/3 with lymph node involvement. Once it was cut out and the breast radiated, it did not "return" for 13 years. It has now metastasized everywhere. I no longer have early breast cancer; I have MBC, metastasized breast cancer, a totally different experience.

I will die from these mets since they are considered incurable. I will not die from early breast cancer, I will die from MBC. To me, anyone with mets doesn't have early breast cancer, they have MBC. Fortunately, there are many treatments to help prolong one's life if one has MBC so I hope needinga miracle is given the right advice.

Regards,

Cindy

Hi. It was really a case of semantics. It used to be that the saying was early screening saves lives. Most people, including myself, was under the impression that caught early and treated people with early stage are basically cured. Still always living with the fear of recurrence. But I was never told that it could also return as MBC. But as in your case, it can recur and metastasize which of course is then MBC which at present, has no cure. The good news is that over the last several years there have been new drugs introduced, new protocols and many women live many many years living with MBC. There are also clinical trials worth looking into. Also please make sure you are at a National Cancer Institute who specialize in MBC rather than a place where treating cancer is one of many specialties. Support groups are great because the facilitators will be knowledgeable on the latest treatment protocols and information on where to find clinical trials.

To me, there are many good reasons for educators to use the right terminology. Many women given a diagnosis of early breast cancer immediately think they are going to die. No one needs such unnecessary stress! Early breast cancer is completely curable. Since most women (70%) will never have to deal with breast cancer again, they should be given this reassurance.

At the same time, the minority of women whose profiles indicate that they are at a high risk for metastatic breast cancer at some unknown point in the future should be singled out for longterm follow-up. They should be advised as to what the various symptoms of MBC (metastatic breast cancer) are, and when to seek diagnostic tests. Ideally, their GP's would be aware of their risk to develop MBC, and be alert for possible signs.

Many of us with MBC are dismayed by the lack of understanding of our disease in the general public. The confusion of MBC with early breast cancer is often the source of this misinformation.

The issue is there are many who will progress to MBC that were not deemed high risk and there isn't any diagnostic test to catch the metastases. It's been found that monitoring with bloodwork does not catch these cancers in advance. So again, 30% of early breast cancer patients become metastatic with no real explanation. Of course more aggressive cancers and more advanced stages are included in those statistics.

According to a table given in a research paper (Breast cancer statistics, 2019 by

Carol E. DeSantis MPH et al in CA: A Cancer Journal for Clinicians), the lifetime risk of American women being diagnosed with invasive breast cancer is 12.8 % (1 in 8) but their lifetime risk of dying from this is only 2.6% (1 in 39).

In terms of age, the risk of being diagnosed increases with age to peak in the 70's at 4.1% (1 in 25) while the risk of death peaks in the 80's at 1.0% (1 in 33).

These numbers for early breast cancer are in complete contrast to metastatic breast cancer where the survival rate after 5 years is still said to be only 27%!

Certainly, it is wrong for cancer agencies to contribute to the public's confusion of early breast cancer with metastatic breast cancer.

My initial diagnosis was just in breast no lymph node involved. It came back after about 8years. And that is 6 mths after my routine check up. It went to lymph node. Chemo, surgery, rads then started hormone therapy. Few mths later went to the liver. Very stubborn one, nothing can keep it stable for more 4-6mths.

Having said that, I've seen many people with liver can become NED. Well I just don't know what to comment.

I guess now, TNBC seems to have more options like immunotherapy.

I am fighting stage 4 bc met to liver for few years now and recently spread to mediastinal. I agree that Australia has good medical treatments but I am running out of treatment options unfortunately.

Have you looked into clinical trials? Please call SHARE Cancer Supports MBC Helpline and ask for clinical trial information. And I 100% recommend a second opinion.

Is SHARE Cancer Supports MBC helpline Australis based?

Here are some resources in Australia

Freecall 1800 624 973

+61 2 9357 9400

Breast Cancer Network Australia's Helpline has a number of experienced cancer nurses assisting Australians affected by breast cancer and their family members - call 1800 500 258.

Australian Cancer Survivorship Centre (ACSC) aims to optimize the health and wellbeing of cancer survivors and their carers.

Thanks for the resources. I guess with Australia public system, they follow a protocol on what they have to give (apparently the best based on statistics). I can't afford a private oncologist.

So are you saying that healthcare for all doesn't allow you to choose your specialists?

With public system, I don't have to pay to see the specialist. The treatment regime is also strictly following protocol as to compared to seeing a private oncologist where I pay for my own bills, private oncologist is able to prescribed more than one under a public system. For example, immunotherapy is not offered to hormone positive bc patients in a public settings (as stats shows its not effective). But if a private patient pushed for it (obviously paying for the treatment), the oncologist can actually prescribed it.

Anyway, for me, I have failed a few line of chemotherapy and all of the hormone and targeted treatment. My LFT number is so bad. My body may not be able to take more chemo, hence the prognosis. I hope this clarifies a bit more.

Thank you for explaining how it works. Have you discussed clinical trials with your oncologist?

Yes, brought that up. There is nothing that suits me unfortunately.

Of course if you are a private patient, you can choose to see any oncologist at anywhere you want because you are paying for it.

Sorry I just checked, it's not in Australia. Unfortunately I am in Australia not the states

Hi Again,I really hope you join SHARE, and ask those with mediastinal mets to respond to you. It is likely that someone will.

I have many mets in my lungs, liver, bones, and spleen, but none in the area between my lungs. It seems that you have been living with MBC for a while now so you probably have consulted all the experts on liver mets in Australia. Is there any expert on breast cancer in the mediastinal area?

Who is suggesting that you seek treatment in Mexico? If your family is in yet another country, perhaps there are experts there to help??

Since your children are young, you probably are also young. Most of us with MBC are middle-aged or older, but we too still want to live. Please do not give up the fight.

I'll be thinking about you,

Cindy

Yes, I've been living with liver met since 2019 and recently gone to mediastinal.

Hi again,

You have probably checked the internet already for any mention of mediastinal tumors, but I thought I'd pass this on just in case...

cedars-sinai.org/health-lib...

Apparently, the Cedars-Sinai Hospital in Los Angeles claims some expertise in dealing with mediastinal tumours. However, it is known to be a very expensive facility, even by American standards. Other American hospital sites that discuss mediastinal tumours include Stonybrook, NY; Saint John's, Providence; Cleveland Clinic, Ohio. Likely one of these would be much less expensive than the one in California.

In Canada, we are very fortunate to have socialized medicine. I gather that is also the case with you in Australia. I have been shocked by the comments from American participants on SHARE on how much they have to pay for cancer meds even though they have medical insurance plans.

Hugs,

Cindy

To be honest, my oncologist didn't even mention what to do with the mediastinal tumour. I'm just speechless. I will continue with Caelyx 2nd dose next Monday and hopefully I will respond to it while buy some time to do mire research. I'm so tired of this.

It seems that you have been dealing with MBC longer than I have been. I was diagnosed in 2019 (spleen, bones, lungs), and cancer spread to my liver just this past spring. I assume that you've probably had all the usual endocrine and targeted treatments. Are you currently on any treatment?

Yes done everything left only chemo options but my liver function test is so bad.

Aww, I really feel for you! I looked up "Caelyx 2", and its side effects. It sounds like a very powerful medication so, no wonder that you are tired! It also seems to me that it may still work for you because it has been used with all sorts of cancers.

Please take as much care of yourself as you possibly can to help your body fight this disease. Please try to dismiss your oncologist's misguided words to your husband. You are a unique individual, as we all are, and you may indeed be among the few who conquer your disease.

I'm sending my most positive vibes across the miles,

Cindy

Thank you Cindy for the positive vibes and encouragement.

You are more than welcome! Please join the very supportive group of women on SHARE Metastatic Breast Cancer (healthunlocked.com/share-me...

Do let us all know how it goes for you.

Hugs,

Cindy

I'm so sorry. Such a shock for you all. Bless you. I'll be thinking of you. 🥰

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