Life expectancy for grade 1 cancer without treatment?
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Frankly, not that much help is necessary after a lumpectomy; I could have gotten along fine on my own, although it was certainly very, very nice that my husband took such great care of me. Other than driving myself home from surgery though his help was a not strictly necessary.
And with what sounds like a very early stage tumor the OP may very well not require chemo.
I find all these rationalizations for avoiding dealing with cancer pretty shocking, myself. And particularly regarding a woman with a child she wants to see grow up. No, treatment of breast cancer isn't fun and it isn't easy but it's probably got a much better risk/benefit profile than, say, pancreatic or kidney cancer. Not all cancers are the same and neither are their respective treatments. To paint them all with the same broad brush is misleading at best.
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OP, if you're REALLYdetermined to skip treatment maybe you'll be one of the lucky ones whose cancer goes away on its own:
http://www.nytimes.com/2009/10/27/health/27canc.ht...
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Well the odds of that happening are extremely thin.
Sos, please read the post from the DivineMrsM, which is very important. It is possible to progress from Stage I to Stage IV, with nothing in between. In addition, keep in mind that smaller tumors, such as your currently "T1" size tumor, can be any of Stage I, II, or III, depending on the status of the lymph nodes:
https://cancerstaging.org/references-tools/quickre...
Your original question rests on an assumption which might not be correct (small (~7 mm?), grade 1 tumor with no node involvement (based on MRI)). Until you have a lumpectomy and sentinel node biopsy, the actual stage and extent of disease is not fully known. Hopefully, there will be no surprises and most of the time what appears to be early stage disease is just that. But there are no guarantees regarding lymph node status, the size of the tumor or grade (which may not necessarily be uniform throughout), or the presence of additional disease (e.g., multifocal disease), possibly with less favorable pathology, etc.
For example, I had a clear MRI, but I had isolated tumor cells in a node. The surgical pathology also found a far greater extent of DCIS disease on one side than anticipated from mammography and MRI, despite MRI being the most sensitive imaging method available.
Whatever you are dealing with, you have a window of opportunity here and now, to treat it at the earliest possible stage, at the time when your prognosis is the best, and with the best chances for the least amount of intervention. Chemotherapy may be unnecessary. You may tolerate endocrine therapy like a champion, and many women do.
You are under a lot of stress (worrying you will have a heart attack). I got a crazy racing heart during the wait for surgery, like a panic attack or something. This stopped after the surgery was done. Anyway, please speak to your doctors about it. They can provide a prescription for a suitable medication, which may be very helpful to you. Many, many here have taken a little ativan or the like to their great relief.
It can be difficult to adapt quickly to changes when you are stressed out, such as schedule changes. As others said, surgery is probably the most powerful intervention for early stage disease, and can truly be life-saving. This surgery is really a number one priority for you and your health, and therefore for your family, and any other obligations you may have can yield for a short while.
Some time in the last century, I was thinking of a career change, and the additional years of schooling required gave me great pause. A colleague wisely said to me, "in X years, you'll look back and say, I could have been done with that by now!" I took the plunge and never regretted it. Not the same, I know. But hopefully you will be looking back in a few months from now and be done with it.
BarredOwl
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sos1125,
It sounds like you can have a lumpectomy. I would encourage you to have the surgery. You may want to consider getting a second opinion at a teaching hospital. I feel you owe it to yourself and your son to explore all your options and make an educated decision. This is an emotional time for you. You have just been blindsided with this diagnosis and you are scared. Not everyone has serious side effects from the drugs. I had a lumpectomy with a sentinel node biopsy and was back to work in two days. I had a re incision for margins. That one I worked a couple of hours the next day and a whole day 2 days later. I did not have much pain. Radiation was uncomfortable but no major issues. I am now taking a hormone drug with no major side effects so far. Take this process one step at a time. You cancer is very treatable at this point. Don't short change your self.
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Wow, there's some really fascinating stuff out there! Do a Google search of cancer spontaneous remission. Here's just 1 of the interesting articles I found: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC331269...
Someday people will look back on this era & be amazed that doctors used to cut people up & fill them with poison & radiation to try to get rid of cancer. And sometimes it worked & sometimes not.
To the OP I wish you all the best whatever you decide. Just remember, it's YOUR body & YOUR decision to make.
And now I'd best leave these boards before I say something that'll get me kicked off anyway
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have you ever had anyone close to you die from cancer? It's not pretty. My brother died from lung cancer as a non smoker. He ignored his "spot" on his lung for 18 months. When he finally got into to get it removed it had already spread to his adrenals. Don't put off treatment. Really, don't.
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Well, as much as I would love not to have had surgery, etc., I certainly wouldn't want to rely on being one of those relative few who experience spontaneous remission. Nor would I want to count on it lasting.0 -
What kayb said!!!
Seriously,, go after it now while it is Stage I and small,,, don't wait. Getting cancer is a crapshoot. Having a spontaneous remission is a billion to one crapshoot. Yes, it could happen,, and I could win the lottery too. Not pinning my hopes on either.
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We all understand patient autonomy, but that is not the question. It was do we think a reasonably good outcome is likely without any treatment, and the majority of replies are concerned for good and sound reasons that the opposite may be true.
Thanks kayb. MrsM was addressing what was possible if left untreated.
Sos, I believe you have sought a second opinion at Dana Farber and were settling the details of your surgical treatment plan. The extreme stress of the diagnostic phase, finding out you have breast cancer, the learning curve, finding a treatment team, and making so many very important decisions are difficult to imagine for someone who has not experienced it personally. The continuing unknowns, open questions, doubts, and fears, the total unimaginable hassle of it all land on you like a ton of bricks while you wait for surgery. You had a plan, and you can do this. One day at a time.
Please check in with your Doctor about your stress levels. Ask the nurse navigator or coordinator about support groups or programs that teach useful stress management techniques such as mindfulness. If you prefer to learn about mindfulness on your own, the book "Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness" by Jon Kabat-Zinn (available from Amazon) is an excellent resource.
BarredOwl
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kayb,
You said it well. I know my girls would be pissed as allget out if I didn't even try tx, especially with what will likely be a positive outcome, and chose to die instead. We all know there are no guarantees, but the odds are in your favor at this point. Look at the long run, not what you seem to think the "hell" of tx might be (which is short term).
Spontaneous remission is a wonderful idea, but not anything one can count on ( I'd just as soon buy a lottery ticket if I was hoping for a win). Yes, it is one woman's body and her decision, but it is unfathomable to me as well, that someone would encourage another to forgo treatment of a highly treatable early stage bc. No guarantees, of course, but the odds are in your favor..
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I came to this journey from a place that most of you, including sos haven't come from....besides needing multiple gyn procedures and even more orthopedic surgeries, I have had not one, but TWO life saving emergency surgeries before my cancer diagnosis. And all I will say is that when I was being shipped off to the operating room both times, I only wished that I had enough time to understand what was happening to me so that I could have made an informed decision. Now, having lived and putting a certain amount of faith into medicine, I can happily say that I'm grateful that we have a thing called Standard of Care that protects patients and physicians alike! I'm sure some might disagree with me on that note, however, there wouldn't be a Standard of Care in the first place unless the medical and philosophical sages didn't think it was important enough to have. That said, if the Standard of Care dictated that the benefits of treatment outweighed the risks, then I, like so many of others before and after me, would take that risk.
Now, with respect to my loved ones....I do everything I can do to be as healthy now and always so that I will, hopefully, never be a burden to them. Back when I was was on that first gurney heading into the operating room, I prayed that I would survive so that my little ones would not lose their mother....Young children need their mothers. Now that I'm older and secure that I will be remembered by my adult children, my prayers for myself are a bit more humble. And after being on this board for 5 plus years, it is with great sadness that I say that I have seen too many mothers of young children lose their lives.
Sos....if you are otherwise healthy, then for your young children's sake, follow the Standard of Care. Don't go to a dark place in your mind. Gather strength inside of you and get hauling on your journey. And finally, don't be surprised if you surprise yourself with strength that you never knew you had! I wish you well!
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Hi kayb:
You both made excellent points about the potentially great risk of foregoing treatment and potentially great benefit, including durable cure, of early treatment.
And VR, amen to paragraph three
BarredOwl
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In early 2011, I was diagnosed stage iv from the start. I was in my early 50s, married, my son was a senior in high school. Tho I knew it was not curable, it never, ever entered my thoughts to "do nothing". I was one of those stage iv women who had chemo, then a lumpectomy, 33 rounds of radiation and been on Arimidex. Those who know me on the boards from being here a while know that I often say some of the most wonderful moments of my life have happened since being diagnosed, not because of bc but in spite of it. I wasn't about to say,'well, it's not curable so why bother?' I am living with this disease, not dying from it.
In a case such as the OP at stage I, where it is recommended is to have surgery to remove the cancer, if it were me and I chose to do nothing, I would forever regret that decision whenever the disease did progress. It's inevitable that it would. Many of us have those "gee if I'd only....." moments about other things. I wouldn't be playing games with my health. I'm here to kick effing breast cancer in the gut with what I can do medically and for as long as possible. Yeah, hearing the diagnosis was surreal. I had to dig down deep inside me to find something within to learn how to deal with this, and if I wasn't going to find it, I had to develop it. It took awhile
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sos1125,
How are you doing?
You've received a lot of well meaning posts here. Is all this helping? If not, how else can we help?
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1) Get the cancer out as soon as you can. I got mine out within two weeks of diagnosis. That was a priority, as long as I was not going to have treatment before surgery ("neoadjuvant").
2) Look at all your pathology results from the surgery (you can get them online through patient portals, or from your doctor's office). You will find out if your lymph nodes are fine, which is likely. You already know you are ER/PR+, Grade 1, HER2-, and most likely the post-surgery results will be the same. You need all the information before deciding on action.
3) Most importantly, before surgery, make sure they are getting an Oncotype Dx test for you. And get a hard copy of the results, which take about 2 weeks. The Oncotype report DOES give you percentage of risk with and without treatment with chemo. If you ER is strongly positive, you most likely will have a lower score, especially small tumor, Grade 1. People with low Oncotypes usually do NOT have chemo.
The Oncotype report will give you your risk of recurrence with hormonal treatment. Your risk without that treatment is basically double that. So if your risk with hormonal treatment is 3%, it will be 6% without. Some doctors aim for a risk under 5%. The difference between the two risk levels is a concrete number to think about in terms of how much reduction in risk is important to you.
4) Do not be scared by horror stories about hormonal treatment. I take one little golden pill in the morning. If you are younger you will probably take Tamoxifen. I think it is good to try hormonal meds, rather than decide against without trying. And give your body some time to adjust. I ramped up from 1/4 dose to full dose with 5 days at each level. You can expect side effects while your body gets used to it but I think often they settle down. But not always. If you are suffering after a month or two, then you will be able to make a more informed decision.
5) Buy the Mayo Clinic book on breast cancer. Get some Klonopin or other med that will help with stress and sleep, low dose. Watch Netflix or tv!! This is the hardest time. It gets better.
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Re-reading this post, I realize that some of this anger was generated by the person without cancer presuming to suggest articles, etc. (PS the ny times article is 6 years old.) But I'm letting it stand.
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I saw my father die of untreated cancer and it was beyond horrible. Part of the reason was that he ignored the signs until it was far too late. Ironically, his mother died of untreated uterine cancer. She also ignored the signs. So you can see where untreated cancer gets you!
My mother had breast cancer at 65, had a mastectomy but no other treatment. Starting at 80 she has had multiple cancers, gotten chemo, radiation, etc and is still active at 91.
Whereas, my older sister let an aggressive sarcoma in her hip go untreated for months, until it was the size of an ORANGE. She had it removed, clean margins. Now she will not go for further tests because she's afraid X-rays and Cat Scans will give her too much radiation, weaken her bones, then she'll break her hip and end up in a nursing home!
Like you, I had problems with incompetent clinic staff, scheduling problems, tests not getting done, etc. That's why the radiation started so long after my lumpectomy. I was stressed out and upset but the goal was to get treatment. I got opinions from two different oncologists. As one friend of mine with BC said, "the internet is a sewer". Studies using tiny control groups--less people than on a NYC bus, for Gods sake!--is like anecdotal "I knew a guy who knew a guy whose sister" etc.
The lumpectomy was easy, although I was pretty flattened for about a week afterwards. Also, getting the lymph nodes biopsied (nothing) and clear margins helped!! The radiation has been a pain in the ass but I like all of the other women in the waiting room.
If, like my sister, you would prefer to die of cancer than go through what are basically minor procedures, go for it. Watching my father barf blood for four days when it could have been treated makes me feel a little...opinionated.
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"-less people than on a NYC bus" - cuddyclothes, are you/were you in NYC? Thanks for the giggle (we needed to bring down emotions here!)
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Winding Shores, can the Oncotype test be done on a positive lymph node? My IDC primary tumor is MIA. And do you have a link for the Oncotype report and risk of recurrence with hormonal treatment (I thought it was only for chemo). How do they figure the grade for the DCIS? Mine is Nuclear grade 2. Where does that come from. I'll go check on the Mayo book. Nice layout of steps to take.
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As one of those people who had stage I progress or really be stage IV immediately & from the beginning, I can attest that it can and does happen. My cancer was stage 1 in the breast with no lymph node involvement only to find from the pre-chemo PTscan that I had 7-10 tumors in my liver. Cancer is a tricky thing and does not necessarily follow some pre-set path. I just wish we could have found mine before the cancer seeded in my liver and while it was still a relatively easy treatment and good prognosis. My heart breaks reading that you would forego treatment when I would give anything for no more women to ever have to be in the place that those of us on the stage IV boards are in. Part of the reason that stage 1 rarely progresses is that it is treated aggressively. The problems with scheduling are momentary annoyances and problems now; please don't let that become a lifetime problem. It is worth it to get treatment to be there for your family for as long as possible.
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nbnotes, what an eloquent post, and I am sorry you are dealing with this.
Marijen, so the surgeon could not find your tumor, only a positive node? I am sorry but I have no idea if an Oncotype can be done in that situation, but I hope it can. The report is different for every test. It has a graph that shows whether or not chemo will help (that takes into account effects of chemo), and gives risk with hormonal treatment implicit in the whole report- it is based on Tamoxifen treatment. MD's have told me that to figure out risk without hormonal treatment, you double it. If we are on aromatase inhibitors the risk might also be a tiny bit lower. Good luck with your unusual situation!
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ditto nbnotes, thanks for sharing.
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Just like your treatment choices it is a very personal decision to decide your future. The tissue typing of your cancer is important to research as some grow faster than others. This site and others can tell you more about the type of cancer you have. My physician told me lots of things but my pages of questions for her helped me to decide that her plan should be my plan. ALL CANCERS KEEP GROWING. Removing the cancer is a good option. Side effects of medications are a risk but have a great chance of extending your life for many years. I have recently been diagnosed and am a hospice nurse (42 years experience). Those that I see and treat who have not undergone treatment do not have a long future. Their quality of life is seriously impacted by not treating. Treatment side effects for (IV chemo) are short term. Talk with your oncologist about any long term effects from chemo (peripheral neuropathy, cariomyopathy etc) and your life goals. Keep your physicians on your goals not just theirs. If your physician is just focusing on their choices for treatment bring them back to the reality of YOU. Medications for treatment may have to change during the course of your care. But you are thinking of your child. Keep that as your goal in your discussions. If your physician doesn't take time to listen and answer your questions, get a new physician.
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Thanks to all who weighed in, I truly appreciate it. I have read articles similar to those referenced by bunnyhuggr; while I suspect it's true that many cancer cells resolve without medical intervention and am open-minded about alternative treatments, I also know the bulk of the evidence points to surgery as the most effective current treatment. At this point I realize skipping surgery was not one of my better ideas. Am in Boston, lumpectomy is tomorrow.
Thanks again.
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sos1125, I am so happy at your choice. Let us know how you make out when you can.
That is great news. You made my day and I'm doing a happy cyber-dance.
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Best wishes for smooth sailing, tomorrow, SOS, with an uneventful recovery, clean margins, a good path. report and clear lymph nodes - all with a minimum of waiting.
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Best wishes for an easy surgery and recovery. I believe you have made a loving and caring decision for your child and yourself.
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So happy!
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sos, special prayers for you as you prepare for surgery tomorrow. I hope all goes well. You made a smart decision.
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Sos, good luck tomorrow. I hope that this Cancer thing is just a small bump in the road of this thing called life
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Best wishes tomorrow! You will be in my thoughts & prayers!
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