To Chemo or Not to Chemo......For my Wife
My wife was diagnosed with Stage I invasive breast cancer in her right breast in May. They did a sentinel node biopsy and no lymph nodes were involved. She had a lumpectomy about a month ago with clear margins. This is her second bout with breast cancer. In 2010, she had Stage O DCIS on her left breast and had a lumpectomy and radiation. She just turned 60 years old.
She had the Oncotype DX test done and scored 27. Her oncologist indicated that chemo is now recommended for any scores above 25, and she recommended TC. In round numbers, the Oncotype results indicated an 18% probability of recurrence without chemo and about a 10% probability with chemo. This improvement in probability just doesn't seem significant enough, to either of us, to go through the pain of suffering of chemo. Two of her doctors are rather emphatic that they consider an improvement of 3 percentage points or more enough of improvement to warrant chemo.
We certainly don't want to make a life-altering mistake here, but we both are very apprehensive about how my wife is likely to handle chemo. If we can avoid it, we certainly want to and are leaning that way..........after all, she's still got about an 82% chance of being cancer-free and avoiding a third bout of cancer.
Any thoughts or recommendations would be appreciated. We've read a number of threads here including "Tiffany's Twenty Terrific Tips for TC" as well as a number of the "Anyone Starting Chemo.....". They are inspiring but also terrifying and humbling at the same time. Thanks in advance.
Comments
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BLMike, welcome to our community - and welcome to your wife as well, though sorry you find yourselves here again. This is a very difficult and individual decision, indeed. Have her physicians recommended Tamoxifen or another hormonal treatment? Have you considered seeking a second professional, medical opinion?
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BLMike, a very hard decision for sure. Your wife has an intermediate onco score. You may ask her MO to order a mamma-print test that will give her a high or low recurrence risk score, if she is still undecided. I had a 21 onco score, did TC and although it was no picnic, my SE's were minimal and it was manageable; not as bad as I had anticipated. You may also ask if there is a less aggressive chemo regimen that they could recommend, such as CMF. Another idea might be to get a second opinion. Other things to consider are: Does she have a family history or other health issues? BRCA gene? Best wishes to you both!
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My wife can't take Tamoxifen because of a blood disorder but will take another hormone treatment after radiation. I can't remember the name of it at the moment. She's talked to 3 different oncologists/surgeons and all recommend chemo.
She does have a family history but has not had the genetic testing done for the BRCA gene.
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I know this is a very difficult decision that only you and your wife can make. Several red flags stand out to me, which you might give particular weight to:
This is your wife's 2nd cancer. (I'm surprised she wasn't on an aromatase inhibitor after treatment for DCIS.)
Her Oncotype is 27 - that's the high end of the intermediate range.
The probable benefit is 8% - that's pretty substantial; there's a big difference between a 10% chance of distant recurrence and 18% chance.
3 out of 3 MDs consulted have recommended chemo
She has family history. (There could be other genetic mutations other than BRCA 1/2 involved.)
I don't see her grade listed, which could influence her chances even more.
I really do understand your reluctance but if I had all those factors stacked against me, I would bite the bullet and do chemo. Distant recurrence is NOT recurrence in the same or contralateral breast; it is metastasis to other organs and is incurable, although treatable. It means that the remainder of one's life much more deeply involved in the world of treatment - and one's lifespan may well be shortened.
It sounds as though a long, no holds barred discussion with her oncologist would benefit both of you. I'd raise every single concern, ask about any/all alternatives, bring up all the fears and concerns and what ifs. This is a major decision you're facing and you need/deserve answers and information.
I'm sorry you're in this situation and wish you both well as you navigate through the quagmire.
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I agree that you and your wife need to have a no-holes barred discussion with the docs about her circumstances....especially about any unique health issues, such as those related to the blood disorder. FWIW, I didn't find those threads, or chemo, to be terrifying, just difficult (especially losing my hair). I was NOT in pain during chemo (some bone pain from Neuprogen but nothing worse than the arthritis I already have and OTC meds took care of that!) and I did NOT suffer, other than the psychological trauma of losing my hair. They have great pain and nausea meds these days, and those got me through the worst of it relatively easily. As did the support I got on these boards. But I never suffered. I have had more pain on the AI medications than I EVER did on chemo!
You really need to talk that through with the docs, because yes, there are some who suffer and have issues on chemo, but many don't. Please also keep in mind that those who have problems are more likely to post than those who sail through without problems.
I know you are scared. You are in a scary, scary situation whether or not she does chemo. However, I would strongly urge you to take a bit of a back seat here. Your wife needs your support and she may well need you to help you talk with the docs. Sometimes it is hard to ask questions and listen and take notes and everything else when one is in the middle of trying to figure out such a tough decision, and your help will be invaluable. That said, I'd like to offer up the suggestion that the final decision should be hers, not one for the both of you, not matter how close your partnership is. It may be tougher for her to make that decision if she knows you are terrified also. I'd suggest letting your wife know that it is in fact her decision (and it is: she is literally the one who needs to live with it) and that while you are scared for her, you will be there to support her no matter what she decides to do.
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You've gotten some good advice here. I would just add that chemo doesn't necessarily have to involve "pain and suffering." It's different for each patient. Chemo for me was doable, and I was able to work through it. Not every patient is as lucky, but many chemo side effects are familiar (but annoying) conditions. For example, Taxol gave me mild diarrhea, which I controlled with Imodium. Best wishes to you and your wife!
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Thanks for the responses. The tumor was a grade 2 tumor. Several folks have suggested "no holds barred" discussions with our oncologist. I believe we've had those (I think). Certainly, our initial discussion with her was rather shocking, but we had a second more measured, longer, and more thoughtful discussion. There's no question she (and several other doctors) are emphatic about the benefits of chemo to reduce the probability of recurrence from about 18% to about 10%.
We understand that everyone handles chemo differently, but knowing my wife and how she's handled several other medical procedures in the past, neither one of us feel like would be one of the lucky ones who get through it relatively easily.
There's no question the ultimate decision is hers. She and I process these types of situations very, very differently. I like to gather as much information as possible and have that information available if she has questions or wants my opinion about something. She tends to internalize these decisions and makes them based more on her gut. I'm simply trying to gather as much information as possible. Thanks to everyone for supporting that.
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Chemo is not as bad as it is made out to be. If she has already had 2 occurrences, you must consider without treatment, she probably will have another and this time it could metastize to other organs. Maybe just have a bmx and be fine with it. Without nodes, she would not have to do chemo or radiation. Just hormone therapy, which I cannot imagine they did not put her on with first episode. Fear of chemo does strange things to peoplesjudgement. Consider it would go through and "catch" all kinds of pre- cancerous cells also.
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Hi BLMike:
You mentioned consulting three different "oncologists/surgeons". Not sure if that meant more than one medical oncologist. I note that the question of chemotherapy is within the area of expertise of the medical oncologist, not the breast surgeon. Also, members of the same practice/same institution may be influenced by each other, follow similar internal guidelines, and/or be hesitant to contradict the recommendation of a colleague or senior colleague, particularly in the other's area of expertise. Because of this, it is common for a surgeon to agree with a medical oncologist colleague on the question of chemotherapy. For these kinds of reasons, if not already pursued and if of interest (assuming there is time medically and under insurance (e.g., in network)), obtaining a second opinion from a medical oncologist at an independent institution can be of added value.
Best,
BarredOwl
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Best wishes to your wife. I was much in the same boat: DCIS and IDC found at the same time, but no spread to lymph nodes or anything. I was devastated when I learned that my Oncotype score was leaning towards the "chemo" end of the scale. I was desperately hoping that I'd be able to skip it because the cancer hadn't spread. No luck - I had my oncologist follow up with a Mammaprint test, which came back "High Risk" and my fate was sealed. It was chemo for me! I spoke with my doc at length, chose the TC regimen (Taxotere/Cytoxan) based on my medical history, went home, and cried about it for a while. I didn't like the idea of feeling gross for weeks, and the possibility of severe side effects.
Well, I'm still going through the chemo. And there are times when I feel really, really gross. I don't like it, no. My hair's gone patchy, my taste buds are pretty well shot, I feel achey sometimes, my nose drips, and I'm always so tired! I sleep a lot. I have also lost a lot of weight which I can ill afford to lose because I was so skinny to start with and now I'm officially underweight, but my appetite's gone downhill as chemo progresses and food just doesn't have any appeal. I've been through a battery of anti-nausea drugs and we found some that "mostly" work, but it's not a perfect solution; I just got a prescription for a new kind to use next round, so we'll see how that one goes. I'll be glad when this is all over! Even with the chemo associated troubles, I can tell you, it's completely doable for most people. It's just a pain in the you-know-what and your wife may be uncomfortable for a while, but this too shall pass, as they say.
The reason we do chemo for these little early-stage cancers is because we don't want them sneaking back into our lives 5 or 10 years down the road, showing up in bone or liver or what-have-you. I desperately hope that I don't have to deal with cancer again. I'm sure your wife feels the same way. If the doctor is recommending chemo, discuss your concerns about it but ultimately I would follow doc's recommendations and lean towards the aggressive side of treatment. Here's to many cancer-free years to come.
Oh, and my number one chemo tip: Hydrate the crap out of yourself. Drink water until you can't stand it and then drink some more. It will help flush the chemo toxins out of your system and trust me you feel LOADS better after chemo if you stay extremely hydrated before, during, and after infusion.
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I had clear margins, no lymph node involvement and am 53 years old. I had to have chemo and truthfully I would not have been able to move on without doing every possible treatment that was offered to me. 8 out of 100 chance is high to me.
I found radiation much harder than chemo. Chemo was no picnic but certainly doable and I would have done more chemo if I had the choice to skip rads! Chemo is certainly nothing like I saw people go through years ago! Much easier.
Good luck on your decision making. I am sure it is tough for you both
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Jiffrig - a bmx accompanied by negative nodes does not automatically get one a pass on either radiation or chemo, and particularly for a second occurrence, as is the case with the OP's wife. It would be nice to think that it was that straightforward. As is generally the case with breast cancer, it's a lot more nuanced.
I only bring this up because too many women are under the mistaken impression that they are safe from recurrence if they have a bmx and, sadly, this is not the case. I think we all need to counter this misapprehension when it arises.
I hope you're doing well with your treatment and recovery.
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Hi BLMike,
Wow this is such a personal decision. I was DX in 1994 with tubular cancer and DCIS. I had the lumpectomy and walked away from any further treatment. Call me crazy, but we moved to Chicago after that, saw a BC surgeon in the city, highly recommended. He looked at all my records and confidently said "watch and wait." Fast forward 17 years to 2011. Mammogram showed small DCIS (which experts are questioning whether this is cancer) and a 2mm IDC in another area. I had 10 nodes removed. I said no to chemo and no to rads. It has been 5 years and I just stopped tamoxifen. I saw my oncologist every 3 months at first, then every 6 months and now every year. He is also a hematologist and blood work is a must at every visit.
No one can tell you what to do. You have to research, get opinions and decide. The statistics are there, I can't argue, numbers count. The surgeon and oncologist who dealt with my original DX in 1994 pressured me to get a double MX, chemo, rads and reconstruction. It was almost like going to a timeshare sales event. You are in charge of your health and quality of life. Yes, trust your doctors opinions but it is ultimately up to you.
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