Doctor said a reoccurence would mean terminal -- Huh?!?!
My sister just had a BMX for cancer on both sides (1cm IDC or thereabouts on one side and DCIS on the other, ER+, PR+, HER2-, grade 2, 1/3 nodes has a very small amount of cancer). She met with the oncologist to discuss chemo and he mentioned that if she had a reoccurence, she would be terminal. I don't get it. After he left, we asked the nurse and she confirmed that this was true. I don't understand this as I see lots and lots of information on here about people living with their 2nd, 3rd, or 4th time of reoccurence or a mestasis. So, what in the world is he talking about?? Can you not try different drugs or different chemo to try to beat it again? I'm confused...
Comments
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I suspect that the doctor meant that since she had a bilateral mastectomy (and therefore no longer has breasts), she is no longer at risk for a local recurrence, and therefore any recurrence she would have would be metastatic (to somewhere other than the breasts). Metastatic breast cancer is usually considered terminal, although people can live years with it.
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Yes, Changes is right. When cancer reoccurs in a place other than it's original location, it is metastatic and not considered curable. Different chemos can beat it back temporarily, but it always comes back. People with 2nd and 3rd cancers had lumpectomies and experienced recurrences in the breast. Since your sister had a BMX, that is very unlikely, although not completely impossible.
Are they recommending chemo? It sounds like it.
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I would find a new oncologist that is willing to take the time to explain what he means by a statement like that. Also could be trying to scare her to make sure she takes chemo and follow up. This doesn't seem to be a good way to start a doctor/patient relationship.
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My doctor said the same thing. That is why after completing treatments, they don't do PET scans and such. I was told because there is no sense, if the cancer returns in the bones, liver, brain or lungs, it is uncurable.
Crappy but true.
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Thanks, everyone, for the information. So, if you can't cure breast cancer in the bones, liver, lungs, etc, can you still try to treat it and can you possibly go in remission?
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Nanaof2, i'm very new to all this, but there seem to be a lot of women prolonging good lives by finding out about mets early. It might be very controllable for some time, even if it can't be cured completely.
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GetSparky -
YES YES YES, if you get breast cancer in the bones, liver, lungs and brain - you can still treat it, beat it back and live for years. you can go into remission, have no evidence of disease. I would even question the statement made about PET scans, while true, they aren't used to screen -after treatment but it is my impression that they are used to track the progress of treatment in patients whose cancer has spread beyond the breast.
we are a long way (though not far enough) from the time I remember as a child - when I would hear that someone who had been treated for breast cancer - would break their arm. then my mom and her friends would give each other that look - like that is it, she is a goner. Well it just isn't that way any more.
Check the Stage IV board, you will read the thoughts of women who are living,working, raising children, loving, laughing and helping each other. Terminal? it is just a label and that Oncologist and the nurse are insensitive dolts - Your sister is lucky to have you to sort this issue out.
Julie E
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You may note many women on here fighting progression an recurrences , but ultimately our lives are going to end sooner because of this damn disease. Yes, it is incurable. Hard to swallow when celebrities like Andrea Mitchell spread falsehoods like " caught early enough BC is 100% curable".
NO IT IS NOT.
That said there multitudes of Drs and researchers helping us extend our lifespans an we fight to hold onto all the time and QOL we can get.
Try not to think about the "what if" and seize the day for what you have now. -
I prefer to say not curable. At least he/she is being honest with you guys. Some people, not all, do live a long time with a terminal disease. They are still terminal, however the goal is to prolong life and improve quality. Different chemos and/or antihormals are used to slow the growth of the cancer, however eventually it does start growing and then if there are different medications left to try then they change them to see if something else will work. There are people on this board that have gone to a better place or are in pallative/hospice care.
A bit of advise, Your sister may not yet really want to comprhend eveything right now. When she is ready do see if she will talk about living will and stuff. She may not be ready anytime soon and please don't push it.
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I feel that there needs to be a bit of clarification here. Local recurrance can be treated, and possibly cured. Having a bilat doesn't remove the possibility of a local recurrance. You can recur in local lymphs and any remaining breast tissue.
Distant recurrance or metasticized cancer, breast cancer that has travelled to bones, liver, lung, etc, is not cureable. It is treatable, and some people do live a long time while treating mets. Others live very short lives after the cancer reappears in distant locations. Each person's lifespan after the cancer has travelled seems to be a function of cancer personality, mets location, and sheer luck of the draw.
I wonder if this comment was made because your sister didn't want to do the full protocol? Or if this was the doctor's way of reinforcing that the first lines of treatment are our best shot at knocking breast cancer off its butt? Or perhaps in response to a question asked?
Your sister might find it helpful to join this site and a chemo thread so that she has a support group of other people who are going through the same thing.
All the best,
*susan*
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Geta new doctor. The pessimistic attitude is not good for your recover!!!
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I think the doctor is trying to talk your sister into chemo. Your best chance to beat this completely is the first time. However, you should definitely be getting second and third opinions.
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What about when it comes back to the ovaries, cervix or uterus? Does breast cancer NOT effect these areas? My friend at work had a BMX 2 years ago. She just had a complete hysterectomy bc they found pre-cancerous cells. This has not changed her stage or grade or orignial diagnosis.
But also agree with if you are not comfortable with your doctor, shop around. I went to 3 MO in 3 different hospitals before I made my decision.
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OK...I just have to chime in here. First of all the doctor is full of shit and dead wrong. Second, you can have a local recurrence after a bilateral. By no means does it mean terminal. I absolutely HATE it when doctors try to scare patients into treatments rather than explain the benefits UG!
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GetSparky, if it returns as a local recurrence, which can happen even after a BMX, then your sister would not have metastatic disease and would not be called "terminal". If it comes back as distant metastasis then the word "terminal", while technically true, does not mean an immediate death sentence. As others have said, metastatic breast cancer can be called a chronic condition and managed (though not cured) for very many years.
Corinne, if yiour friend had precancerous cells in her uterus this is unlikely to be related to her bc since metastasis means cancerous cells that travelled to another part of her body. If she had cancerous cells in her uterus it would either be a new primary or possibly bc mets though I have never heard of bc mets to the uterus. In rare cases ILC will metastasize to ovaries.
Leah
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Get Sparky........I have to post after I read some of the other posts because If I was you or your sister some of the posts would scare the hell out of Me!! Just because a doc or nurse states that if it goes beyond the breast it is terminal is not something I would (after initial shock) get too worked up about. I would rather have a doc that does not sugar coat it. The goal is to get the treatment that will keep you from ever getting it again. And have damn clear understanding of why you fighting so hard to keep it from spreading.
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I love my oncologist, but she told me the same thing. I wanted to stop taking the aromatase inhibitor due to side effects and I told my oncologist if the cancer came back I could take chemo, since I didn't take it the first time around, and I would be okay. Ha! So naive. She blurted out "NO. If it comes back it is NOT curable". I was quite shocked. I guess I missed that part when doing all my research after diagnosis. Please know that there are many women with mets who live a long time.
Best of luck to your sister. Continue to support her, it's vitally important to healing.
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This is just nonsense and these doctors need to update their medical knowledge. I often wonder if doctors have to take CEU's the way other licensed professionals do.
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Merilee, it's not nonsense, it's terminology. We think of "terminal" as in really really soon. I have bone mets, which is called "chronic" because I can live with it for many years. I don't kid myself, though, nor do I float down deNile. It's not curable and it is terminal, just not soon (I hope).
I will either die with it or of it.
Leah
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I guess we will have to agree to disagree on this one
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Thank you for all the information, everyone! I'm sure you all feel the same way, but the hard decisions that need to be made along this road can about drive a person crazy!!
LaughterHelps...I was pretty much thinking the same as you before the oncologist made the comment on being terminal. He did also say that treatments are constantly changing and that they have different recommendations today than they even had just 3 years ago. So, hopefully in another 3 years, they'll be even that much better.
Leah_S...Can I ask what kind of treatment you need for your bone mets? Is it ongoing treatment or as needed? I really am pretty ignorant about stage IV cancer but am hoping it still means your day to day life is pretty darn good.
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Merilee - Yes, and in the United States they're called CMEs - Continuing Medical Education credits. (I agree with Leah re the larger discussion.)
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Metastatic breast cancer is a life-limiting disease. The median survival after a mets diagnosis is generally 2.5-3 yr, but can be all over the place. Some live well for years, others slip away quickly.
http://mbcn.org/ has some excellent information.
Please join us in recognizing Oct 13 as Metastatic Breast Cancer Awareness day.
What is mbc?
It doesn't matter how many pink ribbons you wear,
there is no assurance that you won't develop
metastatic breast cancer.
Metastatic breast cancer, also known as mbc, stage IV or Advanced Breast Cancer, is cancer that has spread beyond the breast and lymph nodes under the arm. The most common sites of metastases are the bones, lungs, liver and brain.No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The spread of cancerous cells to a vital organ is what kills. This is called metastasis.
Metastatic breast cancer can happen to anyone.
We did nothing wrong. Our medical team did nothing wrong. Metastatic breast cancer happens... at any time... regardless of your age, whether you did chemo, radiation, had a mastectomy, had a bilateral mastectomy, ate well, took vitamins, exercised regularly, prayed, had positive thoughts, had negative thoughts, got regular mammograms, did self exams religiously, had a tiny stage 1 primary tumor, or a stage 0 primary tumor, or a stage 3 primary tumor, or never even had primary breast cancer. It doesn't matter.
A diagnosis of mbc means you are on treatment forever... and that is a good thing. We stay on a treatment for as long as it works. When the cancer cell learns to outsmart the treatment drug, the treatment then fails us and we try another treatment. There is always anxiety connected with a new treatment. Will it work? What are the side effects? What happens if this treatment fails me? Will there be a next treatment available?
Since the War on Cancer began in 1973, much has been learned about cancer.. yet... 40,000 of us continue to die yearly from metastatic breast cancer.....AND many are living longer and stronger and defying the odds!
What has been learned is that cancer is a collection of diseases, and some are more aggressive than others.
As science learns what our tumor is positive to (what is feeding it), researchers can set out to develop targeted therapies to stop the progression. -
13 Facts Everyone Should Know about Metastatic Breast Cancer
1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.
2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.
3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.
4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. ("Treatable but unbeatable.")
5. About 6% to 10% of people are Stage IV from their initial diagnosis.
6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person's original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.
7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
8. Young people DO get metastatic breast cancer.
9. There are many different kinds of metastatic breast cancer.
10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
11. Metastatic breast cancer isn't an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.
12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone's situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.
13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org. We appreciate your support on October 13 and throughout the year.
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Thank you for posting this, MJL.
GetSpark, thank you for your good wishes. I am on daily treatment (pill) of Femara, which is in a class of drugs called aromatase inhibitors. These drugs block the production of estrogen and basically work to starve an estrogen receptor positive cancer (estrogen receptor positive means the cancer feeds on estrogen). I am also on a once a month infusion of Aredia, a bisphosphonate. This is in the same class of drugs used for osteoporosis and works to strenghthen my bones and make them an inhospitable environment for cancer. My side effects are minimal and my QOL is fairly good. I'm hoping to be able to stay on this treatment for a long time since it is so easily tolerated.
Leah
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I was diagnosed with breast cancer 3 years and 9 months ago with a single met to my sternum. I had a mastectomy, chemotherapy, sternum resection and radiation. I am on Tamoxifen and Zometa. My doctor puts a phrase "may be cured" in every one of my checkup reports. I will be damned to consider myself terminal. If you have a good doctor he/she should not use that word. This is just my opinion. Best wishes to all of the ladies on here.
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Hugs to you ladies! Lots of great info here. I will be very mindful of MBC on Thursday the 13th. I am still reading mbcn.org and want to do something. Definitely.
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Great info LEAH and MJL!
Wanda sykes was on the rosie show today talking about her double mx and how early starge breast cancer is 100% CURABLE! she needs to get her facts straight or should i say her DR needs too as im sure this is where she heard that from.
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I think Wanda isn't ready to hear the truth. Her life is in jeopardy and it is not within her ability to control her future with certainty. BMX, AI's, exercise, positive thoughts, laughter ... None will guarantee her breast cancer will not metastesize. Obviously if early stage, her odds are better. I agree I would prefer a spokesperson who would spread a more accurate message.
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The statistics unfortunately support what the doctor stated and in fact after spread of cancer the statistics are not good.Well thats if you follow the orthodox route.I hope however the following information will be of some assistance.
In 1986 I developed breast cancer which through a series of misdiagnoses had spread and thus according to the statistics I should not be here some 25 years later. Initially I went along with orthodox therapy and it was during a hospital visit whilst sitting with other cancer patients that I realised when talking to them that most were 'back for more' after re-occurence. On hearing that I went straight to the hospital toilet and threw up! I then walked out and did not go back. Instead I engaged in a great search in London for a comprehensive alternative in cancer therapy and eventually found the Gerson Therapy, which I did for two years. As a Biochemist that therapy made more sense to me than the toxic chemical approach. I did go on to research the alternative therapies and published a scientific paper in 1989 on the mechanism for cancer, which my MP (Member of Parliament) tried to table questions on regarding secrecy surrounding the mechanism I had proposed. I have recently written a book and put up a video on You Tube which covers the mechanism for cancer. It is caused by 3 interlocking mechanisms i.e. biochemical, psychological and evolutionary throwback mechanisms. Actually there is a lot every patient can do to maximise survival which I outline in my book and in seminars/workshops. In my own research as Director of a Charity in the small scale clinical trial of the research, we found that all those patients (despite they had been classed as terminal!) that underwent our psychological programme survived, even though some patients who had better prognoses did in fact succumb to the disease. Psychological factors play a great part in cancer and I am afraid this is not understood. I hope that this has been of some help to you and if you wish any further info you can find it on my website www.answer2cancer.co.uk along with the book. I have been free of cancer for 25 years despite the cancer had spread! I hope my book and experience will give hope to others.
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