Susan Love, MD blog: "All Cancer is Metastatic"

ballet12 · October 2013

Hi all, this is from Susan Love's blog on her website. This is her take on micrometastasis.

All Cancer is Metastatic!

By <font>DSLRF</font> On Sunday, October 13, 2013 · <font>3 Comments</font>

Today is National Metastatic Breast Cancer Awareness Day. Last Friday, a new collaboration amongst breast cancer organizations—the Metastatic Breast Cancer Alliance—was announced, and the Dr. Susan Love Research Foundation is one of the fifteen founding members. Why?

I have written about my difficulties with the concept of calling people who have completed cancer treatment “survivors.” This implies that the “enemy” has been vanquished, never to return. I wish it were that simple. The development of technology that can detect isolated microscopic cancer cells in the blood of people with early breast cancer has made us acutely aware that breast cancer cells “get out” before diagnosis in the majority of people. Some of the cells that leave the breast probably die in transit, while others find new niches where they hide out, dormant, until you either die of something else or they wake up. In fact, that is the exact argument for giving people with “early” disease adjuvant treatments with chemotherapy, hormones, Herceptin or some combination of the above. We are treating the micrometastases that we suspect are there even if our tests and scans cannot show them or even show that they are gone. Knowing that they are there is just a matter of how hard we look for them. It wasn’t that long ago that we considered someone to have metastatic disease when a physical exam demonstrated palpable disease in a mastectomy scar or obvious disease in a bone on an x-ray. Now with more sophisticated methods of detection, we consider someone to have metastatic disease when a sensitive PET scan or blood marker test shows evidence of disease. It is likely that we will soon lower the bar further to include people with circulating tumor cells in their blood but normal scans and markers. Does that mean that we all have metastatic disease? Probably! The question becomes not whether it is there, but rather, whether it is causing problems that need treatment.

I think it is important to realize that the goal for all of us is to live as long as possible with the best quality of life that is possible, whether we have cancer, have cancer but don’t know it, or just haven’t developed it yet! The cure must not be the measure of success! And women with known metastatic disease must not be thought of as different than those whose disease may just be dormant. Think of AIDS. While we do not have the cure, we have enabled many people who thought they were facing an early death to live reasonable lives with a chronic disease for longer and longer periods of time. While our goal is often expressed as the cure, control may not be a bad temporary compromise.

So in honor of all our sisters and brothers living with known metastatic disease, let us honor their experience while recognizing that theirs is a much bigger club than we have previously acknowledged. It’s a club that many of us may be members of but just don’t know it yet. We need to go beyond the artificial separation of stages and recognize that all invasive breast cancer is metastatic from the beginning. The issue is whether the cells are under control or causing problems!

We need to join together to call for research into the cause of the disease while fighting for better treatments. And we need to all contribute to research whenever possible to move things forward, not for one subgroup or another, but for all people whose lives have been touched with the disease! Together, we are stronger than the disease.

bevin · October 2013

Very interesting. Thank you for posting.

ballet12 · October 2013

Bevin, you are welcome. I posted it originally on a Stage 1 thread (with a related topic), and was asked to put it also on a more general thread. Don't know if it'll get more views this way.

Anonymous · October 2013

Thanks for posting it here. It's a thought provoking message.

Beesie · October 2013

Hmmmm..... I don't know how I feel about this. I think that "All Cancer is Potentially Metastatic" or "Any Cancer Might be Metaststic" would be more accurate. The simple fact is that the majority of women diagnosed with breast cancer never have a metastatic recurrence. Perhaps, to Dr. Love's point, some (or maybe many) of those women had cancer cells somewhere beyond the breast at time of diagnosis but those cells were killed off by treatment or just died on their own. Still, I would be very surprised if "All" women with invasive breast cancer have breast cancer cells that have moved beyond the breast. I have no doubt that the percent who have metastatic disease is higher than many believe, but all? I doubt that. Even Dr. Love states at one point in this quote that it's "the majority", which means many, but not all.

I also am not clear on what her message is here. From an education standpoint, I appreciate what she is saying and I think the education is necessary - there are too many women who don't understand that this risk exists for anyone diagnosed with invasive cancer, even if they have clear nodes and clean margins after surgery. But I also wonder if this message might drive unnecessary fear and over-treatment. After all, most women, and particularly most early stage women, never develop a metastatic recurrence. A few cancer cells in the body, which most of us might have, is very different than the development of an metastatic tumor.

Not sure about this at all.

ballet12 · October 2013

Hi Beesie,

I think her main point is that early stage patients are not really ever "cured", and that she makes this point during "Pink" month, when everything is pink and rosy. There is always the chance of metastatic recurrence. I guess that she also believes that many, if not the majority, of early stage women do have these microscopic cells circulating outside of the breast. We just don't measure quite to that level yet. Your point is also very valid. We all carry mutated cells/cancer cells in our bodies. As the immune system wanes with age, the incidence of cancer increases, because these cells are less easy for the body to suppress. This applies to cancer cells which might develop into bc or any other kind of cancer. One thing that has surprised me from the threads on bco.org, has been how metastatic disease has often been found by happenstance, such as an ultrasound or MRI for something else. Early stage patients do not often have tumor markers assessed on a routine basis. Pet scans and CT scans are not given routinely (although I realize the radiation risk with CT scans). Patients sometimes complain of pain for months, and it is written off as something else, even by their oncologist.

Claire_in_Seattle · October 2013

We actually do have the percentage of metastatic disease. That is the percentage who would require "further treatment" from either CancerMath or Adjuvant Online. So no, not everyone needs chemo/hormonal therapy, but you have to assume this of anyone with a relatively large primary tumor and certainly anyone with lymph node invasion.

I do take issue with her saying that most of us are not cured. I believe I am, but that I also need to be checked just in case. That said, my focus needs to be at least as much on the other stuff out there I don't want either: heart disease, diabetes, osteoporosis, lung disease, etc.

The great news now is that we have tests to know much better which therapies are likely to work, and there are more every day. Plus more effective protocols. The frame of reference I like to use in this discussion is that 70 years ago, one in six women with my diagnosis lived; now it's five in six (who complete the therapy). - Claire

Beesie · October 2013

ballet, I agree with you. I think that is her point. There is always the chance of metastatic recurrence. Many early stage women do have these microscopic cells circulating outside of the breast. True.

But also true is what Claire says, which is that most women are cured by their treatment. And in many cases all that is necessary is localized treatment - surgery alone or surgery + rads. Most women diagnosed with breast cancer do not have a metastatic recurrence and most do not die of breast cancer.

Just because every one with invasive cancer has the chance of a metastatic recurrence does not mean that "All Cancer is Metastatic". And just because we don't have the ability (yet) to know which women are cured and which ones are not does not mean that "All Cancer is Metastatic". It just means is that all cancer is potentially metastatic and therefore diligence and monitoring is required.

I agree with the need for education about this but I think Dr. Love's choice of words is misleading, and probably intentionally so. She is good at promotion, and what she's doing is making a point for effect. That's concerning to me because I think the take-away message from her choice of words is different from the truth and I suspect her message will scare (and possibly misinform) many women. Having the potential to develop a metastatic recurrence is a world away from being Stage IV. It seems to me that Dr. Love is trying to blur the lines. I don't see how that's helpful, either to early stage women who are unlikely to ever recur (but who of course still need to be watchful), or to Stage IV women who are dealing with the day-to-day reality of living with metastatic cancer.

When it's flu season, everyone has the potential to get the flu. But of course some people never pick up the germ, others do but their natural immunity manages to kill off the germ before the flu develops, and then there are others who also pick up the germ but don't develop the flu because they had the flu vaccine. No one would ever say "All people have the flu" because that's factually incorrect.

Edited for typos only

ballet12 · October 2013

I agree that the title is misleading and she does write for "effect." Also, as you said, we really don't know which women/men are "cured" and which aren't, hence the term "NED". Thankfully, the majority of early stage patients survive the disease.

smo23915 · October 2013

Bessie, Very well said, THANK YOU.

I had my check up this week at MD Anderson, and we discussed this topic. Basically, what she said was, yes it is true there is the possibility, BUT there are so many variables to take into account. She was not pleased with the article because, as you said it will scare (and that is what it did to me and I am stage 1 with a 2mm tumor.) and misinform, many.

Thank you again, Bessie.

ps. She also said to keep my ear to the ground, about Metformin. Soon to be used for breast cancer. She told me about a large study in Canada showing good results and it should be soon than Onc are using the drug.

Also, told me not to use Tumeric since I am taking Tamoxifen.

Bounce · October 2013

Hi Ballet12

I met my MO for the second time ever on Tuesday and I asked her what tests would be done in the future to look for mets.

This was after she told me I would have manual breast exams and MRI's for the breast only in the future to check for recurrence.

When she said no tests for mets would be done routinely I was shocked and asked why if early discovery is so important.

Her answer was a bit of a shock to me.

She said that because mets are so difficult to treat, and often get used to a particular treatment, requiring changing to another treatment, what happens is that people run out of treatment options - so the later you start treating the mets the better! She said even if mets are discovered early they aren't treated until the time when they start causing problems.

I don't know if this is true or not. All I know is it was not something I was glad to hear.

I am still trying to wrap my head around it and it may be the reason I have been feeling a little depressed since meeting Ms. MO.

I have to add here how much I admire most of the Stage IV ladies on this site.

ballet12 · October 2013

Hi Bounce, I don't fully understand the MO's explanation. I do realize that Stage IV individuals do often have to change prescribed treatments if progression occurs. I still don't understand why early intervention is bad, though, because some mets (such as bone mets) appear to sometimes be stable for a relatively long period of time. It seems like it would be bad to allow them to spread/multiply before doing anything. Anyway, I'm no expert in this. Hopefully, with Stage 1a and no positive nodes, and I guess you did mx, you should be in pretty good shape (recurrence risk of 1 to 2 percent).

Bounce · October 2013

Hi ballet12

I am not saying I agree with the MO's explanation but just think about it - we don't have any tests looking for mets in the years after diagnosis.

I was shocked to hear the explanation and would like to confirm or deny it.

What I found upsetting was that everyone talks about 5 and 10 year survival statistics but fails to mention after that!

Is it true that 20-30% of early detected BC develop mets? That is my question.

With my pathology report from TruCut Biopsy lumpectomy and radiation was deemed the best treatment for survival for me (above mastectomy) but I have a much higher risk of recurrence than 1% - 2% (where do you get those numbers from?) Oncotype score of 21 places my risk at 14% provided I take Tamoxifen.

What I am saying is there is a huge difference between a mere recurrence of breast cancer (which is terrible enough) and developing metastatic BC.

cp418 · October 2013

Bounce - Remember early stage also includes those with positive nodes. IMO we are the ones at higher risk.

Bounce · October 2013

Hi there cp418 - If the doctors have everyones' diagnosis why don't they make the distinction?

Honestly I am not fighting to be in a high risk group that no-one wants to be in in the first place but so far I have discovered not everything about cancer follows logic.

I am just referring to the quoted article that started this thread and the statement I read recently that between 20%-30% of early stage BC becomes mets. I was asking originaly if that is true.

Now I am going to take a break from this thread as I have to say I don't know how to cope with the possibility of 30% odds! Tomorrow is my simulation for rads and I want to be bouncing high - not hitting the floor with worry and despair.

Hugs to all.

May we all go from strength to strength.

ballet12 · October 2013

Hi Bounce, I DIDN'T read your signature at the bottom (beyond the stage). When you said that you would be getting manual breast exam and MRI for follow-up, and you didn't say mammography, I somehow jumped to the conclusion that you had a mastectomy, where the recurrence risk would be 1 to 2 percent. I'm sure that your risk is much higher and the 14 percent risk sounds about right. Best of luck with the radiation.

denilynne · October 2013

Dear Bounce,

I have to say that I agree with you. I am very close to you in diagnosis & treatment. There are so many questions. I went to radiation simulation last Friday. Now, I have to WAIT again, 7-10 days for my schedule to actually start. I asked if there would be any tests like blood work, scans or anything to see how things are coming along during radiation and the nurse told me no. She said in my case, the doctors said that they got all of the cancer with the lumpectomy. The radiation treatment is just to make doubly sure that all of the cancer cells that MAY have been left were killed. Well, it will be at least 8 weeks in between surgery and radiation. Do those errant microsscopic cells just wait, in the same location, for the radiation to kill them? I don't think so but I have no idea just how fast and far they could move in 8 weeks.

You know, I wish the docs had the time to sit down with me and tell me everything, good, bad or otherwise. PLEASE do not hide anything or act like I wouldn't understand it. No, I am not a doctor but I am hungry for the information.

20 - 30% of early BC goes met? Oh gosh, I am having a difficult time wrapping my head around all this too. Well, if it happens, I won't be surprised, I keep waiting for the other shoe to drop anyhow.

Sigh.....

TarheelMichelle · October 2013

Bounce, I first read about metastasis treatment in Susan Love's book, back when I was Stage I. Her explanation was that the treatment for metastatic cancer is the same regardless of how far the cancer has spread. By that I mean, the treatment is systemic and the aim is to control progression not to cure, as with early stage. Her words were meant to reassure survivors that a few weeks or months delay in reporting symptoms don't make a major difference.

I'm not bugged by Dr. Love's article. It has not been proven factually incorrect that all breast cancer is NOT metastatic. Possibly, just possibly, cancer cells ARE elsewhere at the outset, just detected in the breast first. In some women, those other cells never cause problems and the woman lives the rest of her life "cured." Yet in another woman, those cells proliferate and mets is later detected.

It seems to me, now as a Stage IV, that the danger is not in scaring women but in early stage women incorrectly assuming that they will never advance. Yes it's true that most will never need treatment again. I don't think the Us and Them separation between early stagers and Stage IVs is useful when it comes to checkups. We all need to see a doctor for unusual symptoms that may signal mets.

I agree with Love that we need to go beyond the "artificial separation of stages" and recognize all cancer is potentially metastatic. Is it wrong to lump all survivors into a category of "needs lifelong careful attention"? If like Claire you feel great, then wonderful, you keep living life. (Claire your outlook inspires me with every post! :-)

I don't think Love's intention is to scare women, but to prepare women.

We now know cancer can reside in the body even without symptoms. The question for now and the future is, exactly when should treatment begin, if there is a danger of treatment resistance developing? At the moment when micro mets are detected? Or when there is pain? Will there be a day when doctors wait for breast tumors to reach a certain size before starting treatment?

I had negative nodes and a tiny tumor at Stage I. My mets were slow growing, and they were most likely in my body when I discovered my breast lump, just not detectable in scans.

I am fascinated by how our reaction to this story seems colored by how far along we each are in our cancer journeys.

exbrnxgrl · October 2013

bounce,

I was dx as stage IIb after surgery. Six weeks later, while having a PET scan for unrelated reasons, a small lesion was seen on my upper femur. Biopsy confirmed it was a bc met and I most certainly was treated! I had no symptoms or pain but received rads x15 to the area and it has been necrotic ever since. I have also been on Arimidex and Aredia for the past two years and have been NED during that time. I haven't heard of anyone, at least here on the bco stage IV forums, whose mets went untreated simply because they weren't causing problems! Although there are several approaches to treating limited mets, doing nothing doesn't seem to one that most mo's recommend.

Caryn

Chickadee · October 2013

Shifting the conversation to Metastatic Breast Cancer is long overdue. Changes in and additional research won't happen without the push from below. Those pink runs for the cure need to REALLY be about the cure. If Komen has to be dragged and kicking into changing their funding direction this is one way to do it.

jessica749 · October 2013

it's been in other threads recently, and available freely via google some keywords the fact that 20-30% neg node bc eventually becomes metastatic. This stat includes TN and her2 positive cases. Of course, other studies that may just refer to "early stage" may include node positive cases also.

If your bc is under 5 mm, I think there is a close to 0% chance of spread though . Such a little chance that chemo is never given. Technically, always a "chance" but infinitesimally small....

When I asked my oncologist about doing certain tests for potential metastasis my MO pointed out that there was really no such thing as early detection when it came to stage 4, by definition... Perhaps this was a way to simply be devil's advocate to the hospital's policy for cost and other reasons (sheer numbers?) not to test people with my relatively "low" risk stats....? A decision also made weighing risks, radiation , etc.

I like what Dr Love wrote. I like her analogy to AIDs and find that somewhat hopeful as I know someone decades into their HIV discovery. If only bc patients could expect decades....

jessica749 · October 2013

PS. I think it is more dangerous that we are complacent, or feel the battle is being "won", or that after X amount of time, we are "cured". While on the other hand some people may overreact, I feel that's a small price to pay in some cases and probably, for most cases, overreaction is better.

gonegirl · October 2013

i am grateful that my doctor was so cautious and sent me in for a bone scan and ct before starting chemo. Before those scans I was considered stage ii based on lack of lymph node involvement. Mine spread via blood. And I do believe it's good to find it early. The mets covered my liver by the time they were found. If found earlier, perhaps I could have had ablation or surgery.

Anyway, breast cancer treatment is still evolving. I just hope it evolves to a cure

farmerlucy · October 2013

I have to admit I did take a big "gulp" when reading the article, but intuitively I think I knew there are probably cells floating around, why else would all oncs recommend systemic treatment for just about everyone with IBC. I did find it interesting that the definition of mets has evolved from the physical symtoms, to much earlier discovery with scans. Also the comment about stages in also interesting. Honestly, what's in a stage. We cling to it and put our hopes in it, but the reality is we will ALL always have to be concerned about IT. You just learn to live with it, or LIVE in spite of it.

.

exbrnxgrl · October 2013

I'm glad that mets, whether with symptoms or not, are treated. Not treating because there's no pain or problem? The more I think about it, the less it makes sense. Why wait until, a bone bet for instance, has compromised your bone to the point where you need pins or rods? My bone met was zapped into oblivion by rads. Never had pain or needed surgical repair. I am not foolish enough to believe I won't eventually progress but my tx so far has been relatively easy. If mets are found why wait until they give you problems to treat, when treating them early is often easier and gives the patient better QOL?

Caryn

bevin · October 2013

TarheelMichelle - I loved your post. Thank you for sharing your thoughts and insights.

Bounce · October 2013

Hi Guys

Back from simulation - physically easy - emotionally - not so easy.

Denilynne - Yes - Now we play the waiting game again. 10 days to 2 weeks is what I was told with no idea if I will get a decent time slot or have to spend hours waiting and then have to rush to work. My poor boss.

Tarheel Michelle and exbrnxgrl - thanks for the fantastic posts. Beating this disease or at least staying in the game is a combination of brains and intuition. You both seem to have them in good proportions. :-)

I agree with everything you both said and I'd like to thank you (and gritgirl) for taking the time to answer because you have really helped me decide how I want to handle the mets issue for myself (everyone has to make the decision for themselves).

For my first MRI after rads - it will be in about 10 months time - I am going to put in a request for a full body MRI - not just my boobies. Let them check me out and see what is or isn't there. After that annual boobie MRI's and every 2 or 3 years I will request a full MRI. exbrnxgrl - thanks especially for details about your mets treatment because obviously it proves that some mets are best caught and treated early.

I've said it before and I'll say it again - what you don't know can kill you.

Thanks for helping put the pieces of the puzzle together for me in my head.

denilynne · October 2013

Hi Bounce,

My sentiments exactly on the rad simulation. Physically easy, emotionally difficult. Had to show the girls to everyone and his/her brother again
My boss has been fantastic during this time, I am so lucky.

Do you have to 'qualify' for an MRI after rads?

Denise

Bounce · October 2013

Hi denilynne

The first tech showed me to a room and told me to undress and put on the robe. Before she could finish I had my T-shirt and bra off and she said Wait wait I will go out. I told her - Sweetie - you are going to see my boobs in two minutes - its fine and she stayed and helped me get into the stupid gown with its stupid strings.

She was joined by another 2 techs - one of whom must have been a guy in his early twenties. Poor dear - I hope he gets to see better boobs than mine.

When I was young (21 I think) and going to the gyne for the first time I told my mother that I couldn't and wouldn't! She told me to think of myself as a car being checked by a mechanic. I spent the entire visit trying to figure out if I was a Mercedes or a Volkswagen! But it did the trick for me. Since then I realized that medical professionals never look at you sexually so no problem. Especially when there is a crowd of them together.

Of course my breasts have always been uneven and every US or mammogram technician I have ever seen (lots) always comments with great surprise that they are uneven - as if I am the only person in the world they have ever seen.

When I told my daughter to think of herself as a car she told me not to be ridiculous! At least now she knows where I learned my not so great parenting skills from. :-)

I hate doing mammograms and last year I told my doc I wanted to do an MRI instead. She said it wasn't possible. However - now that my tumor did not show up on the mammogram this year but was found with US (I have dense breast tissue so do both) the doc said that next year I would be doing an MRI (I will ask to do US as well).

I am terrified of putting sore booby into a mammogram machine and intend really screaming and crying if they tell me I need to. I will make such a bother that they will have to let me do the MRI.

I know that lots of ladies manage the first post surgery mammogram and I have been really well behaved about everything so far.

I think I am entitled to this one madness.

denilynne · October 2013

LOLOL!!! Oh thank you Bounce! Ya gave me my first laugh of the day! I was in such a rotten mood! I have this hilarious visual of you whipping off you shirt and bra. I love it, I just wish I could have been a fly on the wall to see that nurses eyes.
I like it when they tell you to undress from the waist up....LIKE WE DON"T KNOW THAT! ...and you are right about those stupid gowns with those silly strings. Why couldn't there be snaps?! Last time I tried to figure out those dang strings, I just said screw it and just held the front together. Now, at the hospital where I go, they USED to have locks on the lockers. You could leave everything in there so you don't have to carry around that clear plastic bag with all your stuff, everywhere you go. Now? No locks.

When I went in the room to get rad simulation, there were many people in there. I felt like a specimen. Opening & closing my gown at will, marking me up, talking, laughing & joking with each other like I wasn't even there. I felt about 2 "tall. I wanted to melt right through that table. What happened to 'bedside manner'? Already, you're in such a vulnerable position, couldn't they show some compassion? I was brought up in a generation of modesty. Cripe, even after seeing my PCP for over 25 years, I still am embarrassed to have him looking at my boobs! Maybe if I had a models body........too late for that! Heheheee!!!

On a different note, I discovered something you all might be intereted in if you don't already know. When I had the first mammogram after my lumpectomy, the tech squished by boobs just up to a certain point. Then, used a knob on top, to to squish them a little more. Mind you, this was by hand and NOT with that stupid air pedal! Some of those techs squish them so hard, that I am sure the girls will just spilt open! I couldn't beleive how FLAT they could get!

How do MRI's compare with mammograms?

Now, Bounce, you behave yourself, you hear? :-)

Susan Love, MD blog: "All Cancer is Metastatic"

All Cancer is Metastatic!

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