Safe to Postpone Chemo?
Hi,
I have had surgery to remove 2.1 cm tumor, clear margins, no node involvement. Oncologists want me to begin chemo within a couple of weeks.
BUT - I have been working on a project since 1998, it is the work of my lifetime. And the next 7 months are critical to its success.
What if I just do radiation now and postpone chemo for November? I know there is a risk of cell spread, but I also know the odds are in my favor (if not by much.) I have great spiritual support, and followed an SGS protocol that shrunk the tumor from 2.4 to 2.1 cm in the nine weeks from diagnosis to surgery.
Is there any research that shows the efficacy of such a delay?
Comments
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I wouldn't delay chemo, but that's me. You should be able to do some work during chemo.
What is an SGS protocol? -
SGS is Sulforaphane Glucosinolate. It's been through clinical trials, and is shown to shrink tumors. Essentially it is more broccoli than you could eat in a lifetime in one pill. NONE of the onco docs I have talked with know anything about this, which is typical, they go for pharmaceuticals only. But you can't patent a vegetable, so... I obtained XymogenEP OncoPlex from my chiropractor.There may be other brands.
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Did you have the oncotype test done on the tumor?
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Thanks for the info. I see the problem. Have you discussed this with your onc? What chemo do they want to do and for how many treatments? With the first round of 4 treatments, I only lost a few days out of every 21. It was only later that it became more of a challenge.
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I'm on chemo right now (taxol) and still working. I've had the odd side effect which seems to go away as quickly as it comes. Otherwise I feel absolutely fine and I intend to work through this. I suppose though it does depend on the type of chemo and your individual response. Good luck with whatever you decide to do.
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Well, it was triple negative, grade 3, with necrosis.
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They are talking 4 rounds A/C dose dense, and I think 4 rounds Taxol.
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How did it become a challenge for you?
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Nice to meet you, I understand where you are coming from but I've had two chemo's and my cancer has shrunk by 50% already. This must be very hard for you, do you have children or is it only you.
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I was told that you can delay chemo for up to 12 weeks post surgery. After that there is an issue with its efficacy, although I do not really understand why.
I worked full time as a litigation attorney while doing chemo (I did TC x4). I missed only my infusion days. I was lucky in that I had minimal SEs and my only down day (where I slept constantly) always hit on a saturday. It could be that you can do both.
I understand not wanting to delay or impair your project. However, for us triple negatives, this is our only shot.
I am curious about that protocol. Is that a prescription only thing? Is it just a supplement or is there a diet component as well? -
First, let me just say MY OPINION ONLY, I would flat out never put off chemo on a 2+ cm triple negative tumor, period. It doesn't sound "large," but as far as TN goes, it is a big tumor.
But this isn't me, and you need to consider some things. You say nodes were negative - even for micro-mets? Was there any lymphovascular invasion at all? What was your Ki-66 rate? (speed of cell division - is that right ladies?)? These are all important prognosticators for future potential recurrence.
You say you believe the odds are mostly in your favor for waiting, but even with ER+ that is not accurate. Studies have shown that it is best to have chemo started by 13 weeks post-op, and then survival starts to decrease. Bear in mind this is for tumors that are responsive to chemo and had a high Oncotype, which would hold true with TN.
Please consider your choice carefully and do your research. The effects of chemo can managed with the help of a good and responsive doctor.
I wish you luck with your decision. -
Re SGS, it is a vitamin supplement you can buy without prescription.
Curious, how was your brain function during the chemo?
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Thanks, Suze,
they say my nodes were "clean as a whistle." I see Ki 67 was 80%. Unsure of meaning.
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Hmmm, all I can offer is that chemo and travel and tv interviews probably won't work well together.
I am nearly in the middle of my chemo and am working my research admin job with lots of accommodations eg working from home, flexible hours, parking provided. I was supposed to travel interstate at least once in the first 6months of the year (to check that my hospital sites are running my clinical trials appropriately) but work have OK'd putting this off until the second half of the year...
This is ultimately your decision and it will all be based on stats. The stats the doctors have are for people who follow the "protocol". By choosing to do something slightly different you will put yourself as an outlier not following the protocol and so there will be no stats for you to check against. There's nothing wrong with this if you are happy to accept it.
I myself have chosen to do something outside of the normal when I approved my surgeon to do the SNB only and not do an ALND if my sentinal node had mets of any kind. My decision was based on reading recent research which showed no survival benefit from ALND for micromets in the axillary nodes. My sentinal node actually came back with a macromet which shocked everyone as there was no clinical signs of this. In the end I chose to "take a chance" outside of the known stats and I am trusting that the chemo and radiotherapy will wipe up any further cancer that "might" be there (no signs on CT or bone scan or clinically).
So I am my own little clinical trial and if you choose to do something out of the norm you will be your own little clinical trial...
Hope that makes sense?
Jenn -
My brain function was fine. Most chemo does not go into the brain. I am sure I will draw a lot of flack for this, but I personally don't believe in chemo brain for that reason. I think a lot of people may feel out of it or have trouble remembering things, but I think that is more the consequence of just having a hell of a lot on your mind with this diagnosis than it is a sideeffect of a drug.
eta - the chemo brain may come from the other drugs that go with it - steriods, anti anxiety meds, etc. Personally, I had no problems. -
Your Ki indicates a very fast proliferative rate. 80% of the cells put in a petrie dish or on a slide kept dividing. 80% is very high - mine was 67%.
Jenn -
I am not even sure they would agree to provide chemo after such a delay. I know about the 12 week rule. I remember when I asked my onc if I could delay chemo till after Christmas (still within 12 weeks) he had to think about it.
I am guessing that a delay could give cancer a chance to spread which would change the entire game.
Personally, I would delay a couple of weeks to put arrangements in place to manage the chemo. There is no way I would have delayed beyond 12 weeks. In my opinion, this is your life and health that are at risk. Work is nothing in comparison if you don't have life and good health.
If work is truly important to you, you will find a way to manage it around your chemo schedule. Check with some of the ladies doing the same protocol that is recommended for you. They will have advice on ways to manage side effects and work. -
I never looked this up anywhere... But I had surgery 11/11/11 and my MO wanted to schedule chemo for 12/29/11.... I asked her if it could wait till after New Years.... She said "no!" She said six to eight weeks after surgery, max. And my Oncotype score was low 16, no nodal involvement, no lymphavascular invasion. She was on the fence with even doing chemo, but when we decided, it was like, okay, we're doing it now.
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I had essentially triple negative cancer, too - 5-10% ER receptors. A KI-67 score over 30% is considered high. Mine was 50%. We really only have the first shot at this stuff - there are no good tools for triple negative other than rads, surgery, and chemo. I'm sorry you are in this position, but nothing is worth taking a chance with your life and honestly I think you would be if you put chemo off til November. Median survival for us following distant recurrence is two years, give or take, with few exceptions - not like ER+ cancers or HER2+ herceptin responsive cancers.
I worked through TAC but did take at least 5 days off following each infusion. Some people on this board did much better than that. I have my own business and managed to even add a client during all this treatment. I did lose some income, but I would say I was at least 60-70% my usual productivity. I just finished a 4.5 month clinical trial with more chemo to hopefully prevent recurrence, and it was with a single agent. I worked a lot more this time, sometimes only taking the weekend following infusion off. Good luck with your decision and take care.
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First, I am sorry you have been diagnosed and find yourself with this dilemma. I would seriously question waiting for chemo on a triple negative 2 cm tumor, grade 3 with an 80% ki67. Clean nodes are no guarantee that cells have not escaped and gone elsewhere. You have a limited arsenal of weapons for triple negative disease, and I think a delay of that long would be an invitation to trouble. I don't think you would be able to find an oncologist that would consent to wait that long, most of them feel that unless you start within the 12 week time-frame, aside from a medically explained delay, you will receive a reduced benefit. The measurement of any mass on imaging has a margin of error, it is quite common to have a slightly larger, or lightly smaller, mass on post-operative pathology. You will never know if your tumor shrunk by taking a supplement, or was inaccurately measured at the outset. Good luck with your decision, I know this is a tough spot for you.
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Snoozy, here's a link to the study that showed no difference in outcome for those starting chemo 1, 2 or 3 mos. post surgery: http://jco.ascopubs.org/content/21/20/3792.full.pdf
Surprisingly to me, it looks like the study did encompass women with all sorts of hormone+ & hormone- bc -- although TNBC isn't specifically noted as a group.
In spite of this research, I'm with the others here who feel it would be way too risky to delay starting chemo for TNBC. Those of us who have been on BCO for awhile have seen TNBC friends experience fast recurrences, so we know how aggressive this particular form of bc can be. And, besides, November (as you're proposing) is way past the 3 mos. time limit studied.
I guess the one thing I would add is -- no matter what you decide to do -- please be sure that your onc is very experienced with TNBC. You really need an onc who is up on the latest research to the point of having a specialized interest in it -- not just a general onc who probably doesn't even see that much of it.
Also, keep in mind that many women work through chemo, so you may not be as incapacitated or unable to proceed with your project as you might be imagining. Some types of projects might even be a positive diversion from dwelling on chemo SEs.
I'm sorry you have this tough decision to make. I hope that talking it over here and perhaps even with a 2nd and 3rd opinion onc will help you to solidify your thinking about what to do. (((Hugs))) Deanna
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ImSnoozy, sorry you are in this position. I think the responses you are getting are very kind. I will state flat out that, with your dx, you are risking your life by putting off chemo. Unless the completion of your life's work is all that matters to you, I guess you will leave a legacy but you may not live to enjoy it. I also want to add that while the protocol you are on may be helpful, the size of your tumour was only an estimate. It is often smaller (or bigger) than the estimate - only surgical removal can tell the size. So it's only a guesstimate that the tumor actually shrunk.
I'm with the others - get going on the chemo and try to continue to work around it. While it's not fun, you are very likely to be able to cope well and continue to work with just needing a day or 2 off now and then. Best wishes for whatever decision you make.
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I had the same treatment that the are recommending for you. I was 62 (very healthy other than the BC), a widow, raising my then 14 year old grand-daughter - and a Sr. legal asst. to a very busy Partner in a large law firm. I had my chemo on a Thursday - neulasta shots on Friday before work, side effects hit over weekend. I will admit there were many Mondays that I did not feel like going in, but I did. I remained active throughout it all and suffered just about every side effect known to man from the chemos. If it was known, then I got it. From febrile neutropenia to blood clot in leg, terrible bone pain that nothing would eliminate, etc. I am not trying to scare you, but only trying to show you that you CAN continue your life with some small alterations made along the way, if necessary.
With what you have, while it is only my opinion, but a warranted one nonetheless, I would not put off chemo. You only have one shot at killing this beast, I would do nothing whatsoever to mess that up. I wish you all the best,
Linda
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From what everyone is saying, it would be better to start and see what the side effects are. I'm in a similar situation, having hit the most creative period of my life. I was terrified of my life as I most value it ending. In reality, the worst battle now is against all the negative images I have of the diseased old lady. That's hard!
You shouldn't make your decision based on the worst cases you hear about. go ahead with the confidence you need to beat it. -
Just another voice agreeing about the sizing of your tumour. The ultrasound sizing is not very accurate. According to ultrasound images my tumour had a maximum diameter of 10mm. After removal it was measured at 6mm x 7mm x 20mm. For the small difference you had in sizing I think if you could be bothered to do the stats you'll find the difference insignificant...
I wouldn't be putting my trust in brocolli alone is what I guess I'm trying to say.
Jenn -
I have only posted a few times on BC.org, but felt compelled to add my thoughts. Your Ki-67 is VERY high, mine was slightly higher. My MO and RO are very meticulous about my treatment and scans because of the nature of TNBC. I was even sent to a larger cancer center to be seen by other specialists who have more experience with TNBC and BRCA 1 breast cancers for second opinions by my MO.
My thoughts are: no MO will agree to wait till November due to the nature of TNBC. It spreads quicker than hormone receptor positive breast cancers. My treatments were bearable, 4 AC and 12 Taxol. We TN's have one shot to beat the snot out of this crap: chemo is the main player. Surgery and radiation only part of the plan.
Anyway, that's my 2 cents worth. But, it's always your call. -
ImSnoozy, radiation only addresses the local issue (the site were you have had surgery). Chemotherapy addresses rogue cells that may be circulating through your body and thus recurrence. That is why radiation is given after chemo.
If work is your all and your passion, I can see your delimna. But don't let cancer take you away from all of that and your life.
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Snoozy, here's a more recent study (2006), and the one I was actually thinking of when I gave you the other link above: http://www.jco.ascopubs.org/content/24/30/4888.abstract
This is the one that goes out to 12 weeks, but I don't believe it applies to TNBC. Deanna
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ImSnoozy...sorry that you have to make this decision..but...with tn..hitting it quickly seems to be the best route to go...have the dose dense treatments...you will be done in 4 months...it really does suck but will you be able to handle going 7 months without treatment?
Sorry but cancer doesn't give a crap about anything...get rid of it now.
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My tumor was measured with two different types of scans and the size varied, and the scans were within 1 week. Your tumor may not have shrank, it could have been measured a bit differently between the scan and the surgery, my doc said the size variation of different scans and surgery could be different, but doesn't necesaarily mean the size changed. If you had the exact same scan with the exact same position after the nine weeks and it showed a decrease then it probably was, otherwise it was probably different because of the different procedure of measuring it. At least that is what I was told.
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