Microscopic cancer in 1 lymph node...to do chemo or not??
I had a lumpectomy of a small tumor (1.2 cm) with one Sent. Node removed. The results came back positive on the lymph node, but my onc said it was very microscopic, almost enough to be considered negative.
He said he would "estimate" chemo would lower my risk by about 5%, but decided to get the Oncotype Dx test done. At this point, I do not want the chemo, as 5% isn't enough margin to go through those side effects. I am praying the Oncotype score is low so that I do not have to do the chemo.
Has anyone had 1 positive node and chose not to do chemo? If so, how are you doing/feeling about that decision?
Comments
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Wow, that's tough, Janina.
I know I don't qualify to answer this since my node was not positive, but, even not being positive, I want the chemo. Not that I will look forward to it, but I want to throw as much at this as possible. I'm 54 and the thought of possibly going through this again at 64 or 74, I just don't think I could handle as easily as I can right now.
But that is just me. I'm still waffling between a bi-lateral or not.
Sorry I couldn't be much help, but in the end, I think it boils down to whatever you think you can live with when you lay your head down at night.
In that regard, I can only say, "Trust your gut."
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Technically Oncotype is only if you are node negative, so take the info with a grain of salt. So one node tested had some cells, enough to do chemo is really a personal decision. Sis had 3 negative sentinel nodes and doc did ax dissection anyway as the nodes looked abnormal and her tumor was large - over 1/2 were positive. Interestedly this was after 5 months of preop chemo so in her case her tumor wasnt that chemo sensitive, Doc said very ER/PR+ so Tamoxifen or something similar forever.
Trust your team, get a 2nd opinion and trust your gut. Chemo is doable if you decide that route!
Good luck
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The Oncotype test is also based on assuming you will be on Tamoxifen.
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Hi
I had one positive node and did chemo.
diane
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I will be on Tamoxifen. I think I get confused because in reading some of these forums, many regret having chemo. I am so confused!! I dont want it if I dont need it.
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Hey Janina,
Chemo is doable, not easy but doable. I am being seen at Dana Farber I talked to some amazing onc's . You are grade 3, just like me, that means the cancer (even though it was small) was aggressive. Which means it had the motivation and the intention of growing very big and spreading. If you do have a reoccurance you automatically become stage 4. There is no stage 5. Listening to some of the women with Stage 4, it is an education in cancer, they know what they are talking about it because they are living with it. I think, in my very humble opinion it would be a grave mistake to skip chemo because there is NO going back and undoing a decision you made out of fear. Chemo is a little extra life insurance it might work, it might not but I certainly did not want to regret my decision in the future. I wanted to do the best I could to kick cancers, mutant, oxygen starved, evil, over multplying self. I can tell you I had a small tumor 1.5cm grade 3 and I'm half way done with chemo, again, it's not fun, but it's doable. 12 weeks and it would be over for you, you would be done with chemo. You would probably get it every 3 weeks, with 3 weeks to recover. It is different for everyone, some people don't get many SE's, others say fatigue has been the worst, but you get through it. I hope I helped. Good luck with YOUR very important decision. CH
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p.s. I just want to add that if you had any node involvement, chemo usually plays a strong role in fighting that one little stray cancer cell that wants to attach itself to your liver, bones, spine. I don't want to scare you but if I were you, again, I would do chemo. I had no node involvement but my onc at Dana Farber said the grade 3 alone is a red flag that chemo should be involved in treatment. I'm sorry you had to join this group. I'm sorry anyone has to join this group but I can tell you, I have never met a more AMAZING, intelligent, caring group of women in my entire life. Good Luck and I hope I helped. By the way after chemo I'll be on Tamoixfen as well.
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Hi Janina,
My gut says "do it". Of course, you have to trust your own gut, but if your small bc was grade 3, you should throw all you can at it. I just want to share that my own fear of chemo was much worse than the chemo itself. But, with all of the monitoring and medications they have these days, chemo is "doable". I never even felt nauseous until my very last of 8 sessions, when I didn't take my anti-nausea medication because I hadn't needed it before. And, I worked from home through all of it.
Hope that helps!
sue
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I had a couple of nodes positive, so chemo was a given for me. But if I had only had one I still would have done it without question, as I will do anything to be around to see my toddler grow up. Chemo wasn't fun, but I got through it. No matter what happens I will never have to look back and wonder if I did enough.
Good luck with your decision. I'm sure it's not an easy one.
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I know I should do it. To be honest, it is the hair loss that literally creeps me out!! I cannot imagine. Guess it is a woman thing. idk. I will weigh my decision on the Oncotype test...knowing, in my gut, it will tell me I have to do it.
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Janina, Get your oncotype score, review with your onc, and get another opinion if you feel uneasy. I had very small IDC, 0/10 nodes, Grade 2, bilateral mastectomy and 4TX taxotere & cytoxan. I only got sick 2nd day after 1st TX. Onc just "turned off" the nausea with one tiny pill...took about 10 - 15 minutes. Hair loss was just not a big deal to me. I knew it would grow back, I just wanted to be alive to see it grow again. I got a wig (to please my grandson and my dd). I ended up getting many compliments on my new hairstyle. After my hair started growing enough to go without the wig, I heard many "oh, why did you cut your hair so short? It looked so good!" I just laughed. Now I have had 5 haircuts in the past 12 months.
I think I have a very aggressive onc. I think you have a greater chance of long term survival of bc if you really go after it hard on the 1st occurence. After that, my onc told me it didn't matter that much how soon a recurrence was discovered...the outcome would be the same.
My chemo was not nearly as bad as I had envisioned. Drugs to control side effects now are marvelous! Nothing at all like the drugs 3 of my aunts had to combat bc and chemo SE's
Good luck fellow Texan! And remember how tough Texans are! lol
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Janina, must add that I am taking femara, which demolishes estrogen. I may have to switch to tamox due to increased osteoporosis from the femara. I already had osteoporosis before bc. I don't look like I have osteoporosis, so I don't worry about it too much. I am also getting zometa infusions every 4 weeks to prevent bone mets and strengthen my bones. Some people have problems with SE's from femara and zometa. So far (almost 2 years) I have had next to nothing...doesn't make me feel bad at all.
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I can handle all the SE of chemo..I am a strong person and don't let much get me down. The hair loss is scaring the hell out of me. I am literally in tears as I type. I just spoke with my husband about all this and could not stop balling my eyes out. To know 3 mths of chemo (4x) and the fact the hair grows back slowly...knowing I will be bald through the summer (I am a beach girl!!), knowing I will probably be without much hair for the rest of this year. It sounds so vain, I know...and I am not trying the be that way. I just feel like a woman and want to look every bit like one...and feel hair is part of our look. I know there are wigs... Again, I am putting too much thought into this. I am just crushed!!
I will be 40 in April. I play on an adult co-ed soccer team, I eat healthy, I workout....just seems unfair!! Sorry...I am just talking through my tears...typing as I think it.
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Beergirl: Why chemo?? Seems your cancer was (mild) per say.
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My onc layed out all the facts including my oncotype score, which was 17 I think...just know it was the highest number in the low risk range, the type of chemo & # treatments she recommended. Then she told me she could not tell me to do it or not. It had to be my decision, but if it got too rough at any time I could quit. I was think NO, NO, NO! Then before I left her office I told her I would at least try it. Later she told me I made the same decision she would have made if she were in my place.
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I thought hair loss would be a big deal also - Funny everyone says I look so pretty bald!!!!How weird.
Their is so much that goes into chemo - it seems like when you do it, it is more of an admission that you have cancer and being bald is the icing on the f-ing cake-"I have cancer - sh^t" I think once you really accept the disease - you will know what to do - its just REALLY hard to accept and tears are NORMAL!!
Part of accepting an overwhelming diagnosis.
I'm sorry this happened to you- it'll make you stronger if you truly take it in- Good luck Janina.
Valerie
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I had 2 "specks" of the dye they used in one SN and one "speck" in another SN. I am not real sure but it was something like this dye showed up where the cancer was. They called it microscopic. The surgeon that did my lumpectomy told me they didn't call that positive.
When I went to MD Anderson, the onc there said, "No, we don't call it positive, but we don't call it negative either". So he recommended chemotherapy. Of course as you can see mine was Lobular BC, slow growing, but mine was 4.5cm and had probably been there for 6 to 8 years.
I did 12 weeks of Taxol once a week and worked the whole time. My hair came out. That was a big deal to me. I didn't want chemo because of the hair loss. But like the others have said, I wanted to live (and I was 67 in 2006 when I was DX'D.)
I went to Ann's Wig Shop in Houston and got a great wig. Like someone else said no one ever knew I had a wig on. I had people ask me where I got my hair cut. I would just say,"You too can have this hair. It is for sale in Houston". LOL
Good luck and God bless fellow Texan. I certainly understand how you feel. As others have said it is not fun, but doable. I also had 4 doses of Cytoxan, 5Fu and Adriamycin. One every 3 weeks after the 12 doses of Taxol.
Being young, you have a lot more life to live and worry about recurrence. Do what your doctor recommends. Go for a second opinion. I highly recommend MD Anderson and my wonderful doc is Dr. Daniel Booser.
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janina
i had a very small tumor, no nodes and a high intermediate oncotype score..i am almost done with my 4 rounds of chemo. i used the penguin cold caps which you can ck out on this site...i have not lost my hair!!! pls consider using them if you decide to do the chemo...when do you get your score?
arbella
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SammieKay, that is waht I was told...spec made it positive, but could be considered negative. I just have to put my "big girl panties" on and step up to the plate and do what I have to do!!
Arbella, You actually had good results from the cold cap? Everywhere I read says they do not work, only give headaches. I will most definitely check into this!! I find out my score on the 10th.
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Janina, I understand your feelings about the hair loss. I had a nightmare about seeing myself in the mirror. What I can tell you is this--we learn how to deal with so much--things we could never have imagined going through. I found out I had a nicely shaped head, that I looked great with my buzz cut and people rave about my wig--they can't believe its a wig.
Grade 3 is very aggressive--get your 'big girl panties' on, girlie!!
PS Chemo was very doable--I told my oncologist that I would rather be dead than go thru chemo and was I every surprised that I could do it.
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hi...I had one slight positive node, and did not do the chemo.
The difference between 1-2 nodes and node negative is slight.
MAKE SURE YOU ASK YOUR ONC FOR THE 4 PAGE REPORT
The last page has the node positive chart.
Good Luck!
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Cooliegal....so refreshing to read that!! So there is hope!!
I have all my pages!! I am looking at the penguin cold cap (stops hair loss for chemo). There is a thread on here of users, and all of them kept their hair through chemo.
I will see what onc says next week. Hopefully oncotype is low!!
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hi janina, just want to say you are not alone about hair loss. when my breast surgeon told me about chemo, i cried and said no, no, no..i dun want chemo and like yourself, am concerned about hair loss.
to support me, one of my female colleague to going to shave her head. she said 'being hairless n looking bald is nothing! healing n recovering fast is more significant than anything esle' and this woke me up.
1/3 nodes tested positive and am going for chemo (starting feb). I want them out of my body!!!!!
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I had a rough time losing my hair but my husband loved me bald! Now it's growing back and it's pretty cool to see what I'd look like in all the different hair lengths I was always too chicken to try out before! Good luck with your decision and hang in there!!!!!!!
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Doing chemo doesn't guarantee that the cancer won't come back.
Hormone treatment (Tamoxifen) actually is more effective for those whose tumors are hormone receptor positive, and there is some thought that the main benefit of adjuvant chemo for pre-menopausal women is that it causes menopause at least temporarily. Doing chemo delays starting the more effective hormone treatment by months, as long as 6 months or more.
Chemo will cause hair loss which is usually temporary. It can also cause cardiac damage, nerve damage and other cancers, those side effects are often permanent. The incidence of those permanent side effect is often about equal to the percentage of benefit from chemo. Different chemo combinations are more/less likely to cause specific side effects.
Do the research. Understand the potential risks posed by the specific combination of chemo agents being proposed for you as well as the potential benefits.
Questions to ask include" What percentage of patients on this regimen nail's fall off?", "What percentage of your chemo patients are hospitalized with infections such as pneumonia?", "What percentage of patients on this regimen have permanent side effects? What are those side effects?"
If your oncologist tells you that those things dont happen, run to someone who can write a prescription for Tamoxifen and don't look back. Because if your oncologist isn't willing to be truthful about possible problems before you start chemo, there is no possiblitliy that they will be there when you run into a problem during chemo.
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Everyone on here is making valid points.
PatMom, My dr told me the chemo would make a 5% difference, which I told him was not enough of a difference for me to go through it. This is wy we decided to do the Oncotype test. Although my node reads positive, he said it was so small that it could fall into the negative, which is why I was allowed the test (you must have node neg.).
I dont want to make a wrong decision, I dont want regrets. If I didnt have a 2 yr old, I wouldnt even worry with it at all.
I will let the Oncotype guide me. I find out next week.
As for the Penguin Cold Caps, they seem very interesting and worth the price of rental. just seems like a headache and a lot of work for hair loss that I can cover with a wig until it grows back. I play soccer...so I am sure I will be wearing a fitted cotton hat most of the time anyway.
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Is CMF a possibility...you lose 20-50 percent of your hair. It would seem like a reasonable choice if you are a borderline case. That was the chemo that was offered to me. Maybe ask your doc what he thinks? There is also a very long CMF thread on this site.
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