Olivia Newton John

Traveltext

PM me your itinerary janky.

wallan

I am alarmed that your risk of recurrance increases as years go by. I thought it went down.

I was stage 3, hormone positive and node positive, grade 3 14 years ago. I was 41 then. I like to believe I beat it. I did not think my risk increased over 30% ever... in fact, I thought it went down.

So this means my risk goes up more and more as time goes by?

That is terrifying.

wallan

Traveltext

The discussion on statistics is developing into a saga. I'd suggest people should believe whatever they like, based on their medical team's advice and/or on what they read.

If you want some interesting late-night reading go to this long thread :https://community.breastcancer.org/forum/105/topic... where the community discussed this topic at great length.

janky

Traveltext - PM'd you

wallan - this disease is terrifying no matter how you look at it unfortunately, we just have to do our best to live, love and laugh lots!

I truly enjoy and appreciate the support from the forums/threads here.

Bosombuddy101

No, no...the risk of recurrence goes down as time goes by. Where did you read this? Sorry, I didn't have time to read the long thread.

PoseyGirl

Hi Traveltext, I may go and visit that link. Or not . However, I'm not sure I would say that this thread has necessarily turned into a saga. The initial poster talked about ON-J and then raised deep concern about her personal prognosis. And then pursuant reply posts have been on point about recurrence and its patterns and associated numbers. Am I somehow mistaken?

I think that while we can 'believe what we want to believe' sure enough, our poster is scared. And facts - real numbers - exist to respond to that fear. When I read a comment (with all due respect) like "all cancer will return given the time", I just question it. It's a bold, not to mention distressing, statement and I think it's pretty ok to share numbers and information to allay her fear. Have a great night!

Lantana70

I thank everyone for their responses but did freak out when I read all hormone positive cancers will recur. It makes me feel so helpless.

Peregrinelady

Lantana, please do not feel helpless based on conversations here. Do what you can to stay healthy and try not to dwell on statistics. No one can predict who will recur and who won’t. Whether it happens or not, worrying about it just wastes your time. Enjoy being alive now and let the future take care of itself.

Traveltext

No, there's no saga here, my mistake, but this is a contentious topic with so many different opinions (from both laypeople and scientists). But, Peregrinelady's advice works go me

wobbly

The link Traveltext points to is quite frankly awful bedtime reading for someone who is already scared.

Stage one hormone positive breast cancer is curable and this is the diagnosis of the poster.... so sleep easy with that knowledge Latana

We all have a unique risk of recurrence and our oncologist and the statistical tools like CTS5 ( google the calculator) can give the layperson ( as we all are) some approximate accuracy.

Love and peace to all , especially those women and men who have suffered the trauma of a reccurance

Lantana70

thanks Wobbly. I just used the CTS5 calculator. It has has substantially improved my mood. Good to know I am considered low risk.

I will try to stay healthy and enjoy my life.

Thanks one and all for taking the time to reply. Your wisdom and advice is much appreciated. It can be lonely when nobody really knows what it is like to be in my shoes

VL22

I had both ER+ HER2- cancer and TN. I think because the TN was such a more devastating diagnosis, I was like “if only I could just have the the positive tumor!” The idea of being able to put off fears of recurrence for years actually appealed to me!

I don’t mean any disrespect by this - just how this crap disease really messes with your head!

My take on all these stats is that I’m a stat of one. I’m going to enjoy the life I’m living as much as possible. I’ve done all I can do - I refuse to let this mentally and emotionally drain me

Wattlump

I live in Brisbane

janky

Hello and best wishes to all from Robina, AU!!! I have finally made my dream come true - hubby and I arrived yesterday to Brisbane, and will be in Robina at our son's home till mid November. We have a trip to Byron Bay, then Sydney for a few days, then back to Robina. Rainy and cool, but sunshine is on its way, hip hip hooray!! (Not really on topic )

Traveltext

Welcome to Australia. Did you get my itinerary suggestions?

janky

Traveltext - I sure did and will incorporate them as we travel from home (Robina) Thank you again, safe travels...

Delvzy

Unfortunately if u look on the boards there are many women that had dcis that now have stage 4. I myself went over 8 years and because I thought I was 'safe' I self diagnosed my rib pain as costocondritus By the time I was diagnosed I had mets in my bones everywhereNot wanting to frighten anyone but I know quite a few women that were diagnosed with stage 4 after 5-25 even more years. I asked my oncologist last week and he has many patients that were stage 0 1 2 with reoccurrence.

Lantana70

sorry to say this Delzy but you are scaring me!

I am awfully sorry you cancer progressed to stage 4. I wish you all the best, I truly do!!

Can I ask why you did chemo if you had DCIS? Just curious, I live in Australia and we are really moving away from chemo, especially for non aggressive cancers.

In terms of your doctor seeing many recurrences from stages 0-2, I think that is totally going against this big idea that early intervention saves lives. Just seems really negative.

But you know what, we all live with risk. No one is risk free and I think we should bring out the best in each other.

TB90

It is my understanding that chemotherapy is never used as a treatment for pure DCIS. Perhaps there was also an invasive component. An accurate dx of DCIS cannot jump to stage lV without a recurrence, albeit the recurrence may be missed initially. There are no guarantees but very few DCIS patients will ever progress to stage lV. A recent study, and I believe it is posted on bco, shows that women dx with DCIS live as long or longer than non diagnosed women, likely due to improved lifestyle factors following dx. So remain diligent with your health, but don't live in fear.

Polly413

TB90 - I agree with you about the DCIS. DCIS is by definition confined in the duct. If it is removed correctly it cannot "spread" and become Stage 4 or any other stage for that matter. The problem with DCIS is that it can be hard to detect by mammo. Some people on this forum had DCIS detected by MRI when the mammo missed it. So you could be treated for one DCIS lesion but have other undetected DCIS that escapes the duct and spreads. When I had DCIS in 2000 some breast surgeons who did lumpectomies for most cancers would insist on a mastectomy for DCIS for just this reason: its hard to know if you got every DCIS in the breast. My surgeon did do a lumpectomy and I had no other treatment. Have not had a recurrence in 19 years on that side. But I would caution about the study that shows the same risk for DCIS and for no cancer at all. I will look up the study but I have first hand knowledge that convinces me that having DCIS is not the same as not having it for longer term cancer free survival: 17 years after my DCIS I had both DCIS and IDC in the other side. It stands to reason that if your immune system allows you to get cancer one time, it could allow you to get it again. But I do agree that DCIS if correctly diagnosed and removed cannot spread. Another point I would wonder about is that life style changes make a big difference. If that were true many people who eat healthy and exercise a lot would not get breast cancer in the first place. It is hard for researchers to do life style studies because the behavior is self reported and often inaccurate. For years we were told thinner is better for avoiding breast cancer but there is recent study that shows before menopause that is not true. I think that there is an undercurrent of trying to blame women for their cancers and trying to give them hope they can control something that cannot be controlled. Just my opinion. Except for lung cancer and smoking are men ever blamed for their cancers? Polly

TB90

I was just hoping to put risk and fear into perspective for previous poster. I have ready several studies, including Mayo, that place overall life expectancy for DCIS to be comparable to general population. As for lifestyle changes, they definitely improve life expectancy. Diabetes and cardiovascular disease kills more women than breast cancer. Suggesting lifestyle changes improve longevity is not even close to suggesting blame for breast cancer

santabarbarian

Remember, some 'recurrences' years and years later might be a new BC developing from scratch... so obviously when you double the window from 15 to 30 years more cancers will happen. The longer and slower the possible window of recurrence, the more likely you will be alive for a breakthrough!

If you are scared, instead of worrying, eat a low animal product/ high above-ground-veggie diet/ no empty carb diet, exercise regularly, and take supplements. Make your system unfriendly to cancer! Integrative approaches have a lot of power to shave down recurrences. Look up Dr Keith Block's "Life Over Cancer" or the Ross Report -- there is a ton you can do with a 90% vegan keto diet, exercise, fasting, and integrative medicine. There are OTC things like melatonin and baby aspirin that correlate w lower recurrence. Depending on the kind of cancer, certain foods to favor/ avoid. Don't worry, be proactive!!!

Like VL-22, I got TNBC. TNBC is an exception, where if you get a recurrence it will be fast (usually <18 mos, and almost always years). VL-22, I know what you mean about wishing for a "+" to have a follow up treatment... So I am doing every integrative thing I can right now. In 3 weeks I'll either be pCR, w/ 8% recurrence at 3 years... or no pCR. If no pCR, 33% will recur within 3 years. And 18 mos is about how long you last if so.

I will admit that knowing if I live I'll be able to let go of recurrence worries at year five is a fairly decent silver lining. But it's scary to get the pCR "sorting hat" in 4 weeks!

Polly413

TB90 - Sorry I misunderstood your point about DCIS. I thought you meant the risk of getting breast cancer again. I can see that overall life expectancy might be the same for DCIS as compared with cancer free. Also I do agree that a good diet and exercise (i.e. those types of life style changes) can improve overall life expectancy in general. For diabetes and cardiovascular disease for sure diet and exercise make a big difference but the biggest help as I understand it with even those two diseases are drugs like insulin, statins and blood pressure meds, etc. But you were talking about DCIS and long term survival "likely due to life style factors following dx." That is the point I was responding to. I wish it were that easy but I don't believe it is. It would be interesting to have an overall survey of breast cancer patients and what they were told about life style changes by their bc doctors. I have been treated at a major teaching hospital in Texas, a university teaching hospital in Virginia and a very well regarded private hospital with various breast surgeons and medical oncologists and I personally have never been advised to that effect. I have an open mind on the subject but at this point I am not convinced. Best wishes to us all as we live with breast cancer and struggle for answers. Polly

santabarbarian

Polly

Healing cancer and healing a cancerous system are two different disciplines. Oncologists know a lot about the first, and very little about the second.

Cancer is very related to metabolic conditions and diseases. Diabetes and cancer are both very metabolically connected. And there are many other things that affect recurrence. The typical USA processed foods diet without enough antioxidants and too much booze and animal foods makes for a lot of inflammation-- very connected to the development of cancer. In some cases you can have underlying issues that might impact the cancer that an integrative cancer doc would look for and treat.

Look Up The Block Center, in Illinois. He's been using integrative therapies WITH regular chemo/rads/surgery for 30 years, with very good outcomes. His book gives a lot of the info that I paid 1800 for!