To do Chemo or not to do..that is the question
I am 43 yrs old, diagnosed with Stage 2 bc. 2 tumors found at lumpectomy measuring 1.7cm and 1.4cm. Angiolymphatic invasion present, 1 of 2 nodes taken was positive. Margins were not clean after first lumpectomy so had a re-do and did get clean margins. My oncotypedx score is low. My onc does not seem to think i will benefit from chemo but I am afraid not to. In first MRI there was a lesion discovered in my sternum. Had a bone scan that showed it as well, then a biopsy of it that turned out inconclusive. That still bothers me. The PET/CT scan ruled it out eventually but we still don't really know what it is. I know chemo is toxic but am afraid to not do it with a pos node and angiolymphatic invasion. Standard of care for my age with 1 pos node is chemo. Opinions are very welcome. :-)
Comments
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I'm sure you are going to get many opinions!
You are on the cusp of a paradigm change in breast cancer oncology, which is good and bad. The good is that new tests are available to you. 4 years ago, noone was using the Oncotype with node postive pre-menopausal women. Now you have the information that chemo is unlikely to benefit you. However, the sample of premenopausal women with positive nodes that diagnosis is based on is not very large. So, you have to decide how much weight to put on that piece of information. It soundslike your oncologist puts a lot of weight on the Oncotype score.
The bad news is that you are a trailblazer if you choose to go with the Oncotype score and not have chemo. And so there will always be a treatment option you didn't take. And the subsequent "what if?". The thing on your sternum would bug me, but welcome to cancer treatment where we don't always know.
The most important piece of your treatment from what you have said will be hormonal therapy. In fact, although I was hesitant to have chemo, with a diagnosis like yours, one certain benefit I can claim from it is that it shut my ovaries down. You might want to talk with your onco about how s/he sees approaching hormonal therapy if you don't do chemo. Without chemo, I would want to take an aggressive approach to hormonal therapy.
Don't make your decision based on side-effects (it doesn't sound like you are) because they vary tremendously from person to person. Don't be afraid to get a second opinion. Don't be afraid to go back to your onco and ask her/him to walk you through the reasoning and odds you are facing.
The most frustrating thing for many of us was to discover that it really was up to us to make treatment decisions. Standard of care aside, the doctors don't have a crystal ball of what will be best for any one individual.
All the best.
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Your oncologist and the Oncotype test have both told you that chemo is not likely to benefit you. Believe them and start on the (at your age likely) Tamoxifen treatment ASAP!!!!
Delaying the (probably far more effective) hormonal treatment for months in favor of chemo that is likely to be of little or no benefit in your particular case is not a good idea.
That is a piece of the treatment puzzle that is not often mentioned in the chemo/no chemo decision. The time that you are being treated with chemo is time that you are not being treated with the frequently more effective hormonal treatment, and you want to get that benefit as early in the process as possible.
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Young, with angiolymphatic invasion and a positive lymph node...I wouldn't care how low the Oncotype RS was, I'd do the chemo if I were you. A low RS doesn't guarantee you won't end up with distant metastatic disease. Get another opinion or two before making the decision.
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Wow! Responses so quickly...I am very appreciative and really like the different advice and outlook. Ultimately we all have to make our own decision of what is best, but it helps so much to be able to talk with others that have struggled with their own decisions. I did refuse the axillary dissection which was the next step with a pos node. That would have eliminated the "unknown" but I just did not want to go through that difficult piece of the journey and possibly deal with long term side effects. That NYTimes article saved me a little from having the nodes all removed but not until my onc discussed my case with Sloan and they gave the thumbs up to avoid it at this time. Luckily my margins proved clean so I did not have to undergo the mastectomy and node removal though I would have without hesitation if my results had been bad. I just wanted one more shot at it. Yes, my onc is definitley talking Tamoxifan but will leave the chemo decision up to me in the end. That is so tough. Thank you for your input!
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If you are unsure...maybe you could get a second or third opinion from other oncologists (especially ones that specialize in breast cancer). There are even naturopathic oncologists at the Cancer Centers of America if it that route appeals more to you. Ultimately, it is a very personal decision that you alone with have to feel comfortable with. Best of luck to you!
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I would definitely get a few more opinions - probably three, total, just to be sure. If the chemo isn't going to benefit you, then it is not a good thing to do. Definitely do the Tamoxifen. You might also want to look at injections of Mistletoe,which are standard treatment in Germany. A CAM friendly doctor can prescribe this, but it is not covered by insurance. Look up Avemar - it is supposed to be very effective at fighting cancer and has been proven to make Tamoxifen more effective. It is a powder that you drink with water every day. There is a Chinese herbalist named George Wong in NYC - he has done a TON of research on BC and herbs. I can try to find out his contact info if you want. Just PM me. I am suggesting these things because you should definitely do something that is systemic. However, if your oncs are all saying chemo won't be effective, then I would look into other options.
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My question would be - did your onc take both tumors into account. Did they get an oncotype score on both tumors or did they just get it on the larger tumor? If you base your decision on just the larger tumor you do not have complete information.
I had two tumors, with different biologies and different oncotype scores. The smaller one had a higher oncotype score than the larger tumor. Luckily, both scores were low enough that I felt comfortable avoiding chemo.
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I agree with the others who suggested a 2nd or even 3rd opinion. I've had BC twice, first time I talked to 10 oncologists and got 10 different answers (this was in 1987--didn't have a proctocol at that time for my staging etc..) I did do chemo then. Ihad a recurrance last year, spoke to 2 oncologists, one for chemo, one against--I decided to not do it this time around. But it is a personal decision--I believe knowledge is power--talk to enough people until YOU feel comfortable with your decision--because you are the only one that has to live through it. Good luck.
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I too would get another opinion and make sure you understand the pathology on both tumors. I did have two opinions..one said no chemo and the other said she felt I would benefit from chemo. I also had angiolymphatc invasion and am 45 years old. Oncotype was 17. I decided on chemo. I have a 4 year old son so that also factored int my decision. In the end you need to do what is best for you personally. You have to make a decision that you can live with too. Best of luck...I know this is difficult.
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lovetorun - As you stated this is your choice, your body and your decisions.
I would like to share my experience in hopes that it will help you along your journey. I am not suggesting any course of treatment as we are all different, and so are our cancers.
I had two tumors, DCIS and IDC. Decided to go with BMX because of family history, that was my first decision and in all honesty it was the easiest for me. I was clinically node negative. Final pathology came back 2/3 SN positive. A fourth LN found in the tissue along with IM node and they were negative. No lymph-vascular invasion was found. Clean margins all around.
At that time in Dec 2010, if you had a positive node ALND was the standard. My surgeon said it was my decision because recent studies, which had not been published, indicated it may be over treatment in my case, and I had only 9% probably of further lymph node involvement. He encouraged me to get additional opinions. That was the key for me. Different opinions.
One medical oncologist, who was my independent opinion (in other words would not be my doctor), gave me the best advise. He told me to research as much as possible, ask questions of the other specialist I saw and make them sell me on the their recommendations because in the end it would be my decision because it is my life.
I ended up refusing the ALND.
All oncologists I saw recommended chemo (insurance would not pay for Oncotype test and they all said it would not change their recommendation). Before choosing my medical oncologist I interviewed them and had them sell me on their recommendations for treatment. I chose my oncologist based upon her philosphy, her emphasis to treat me as an individual, her dedication to be with me for years to come and monitor me closely, and she was open to integrative therapies which was important to me. She was exactly the type of oncologist I needed. She recommened AC + Taxol for me, although we did discuss other regimens. When I said I wanted to go with AC+Taxol she gave me the option of dense dose and said it was my decision.
I also went outside the 'standard of care' again when I refused radiation of my chest wall. Based upon professional opinions and research for my situation, I decided to only radiate my superclavical and axilla since I was in the grey area for radiation. My oncologist supported my decision.
I would strongly recommend getting at least three opinions on how to treat your cancer, research as much as possible, and be as comfortable as possible with the treatment you choose. This is your body, your life.
Best of luck, it is difficult to weigh all the information, but trust yourself to make the right decisions for you. When I ended up making each decision I felt good about them and knew for me, it was they were the correct decisions.
Feel free to PM me.
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I really agree with 2nd and 3rd opinions but sometimes it gets me even more confused. I hope that is normal??? I will look strongly at the numbers, statistics, benefits, but also pay attention to my instincts. I think women have very strong intuitions and make their best decisions by listening to them. I am deep down afraid that if I did not do chemo, that someday I may have news I would really regret even though it can come back on its own at least I know I tried. I don't have any history of BC in my family so this has been quite a shock to say the least. I believe my tumors were of the same pathology but I am so glad that was mentioned so I will remember to clarify that. I do alot of research but have been advised to be careful what I find and to ask the doctors for verification. What bothers me most is though my cancer is low grade, and low oncotype RS, I still managed to have 2 tumors and a positive node and that makes me think twice. It was either there a very long time and had the time to grow and travel or the opposite which will never be known. I just keep thinking if a few cancer cells got away and they are lurking around somewhere I don't want to give them opportunity anymore. Thank you to all of you for sharing your personal stories and opinions. I have met so many wonderful, strong women on this journey.
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It is confusing. Don't expect the %'s the MO's give you to be the same. I get different statistics from the same MO 4 weeks apart. I had to beg for the oncotype test, it came back 4. I have 2 positive nodes but I am grade 1. I had an annoying lymphnode in my armpit for 3yrs. It was believed to be an isolated lymph node. The tumor never showed up on mamo & was found on MRI. That annoying node turned out to be a positive SN. I have no idea how long it's been there but probably more than 3yrs. Not sure how angiolymphatic invasion & the sternal lesion play into this for you. Push for more answers. The standard of care is evolving. 10yrs from now, maybe no one will recommend chemo to women with stats & numbers like you & I. Best of luck.
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my girlfriend was in same situation, stage 2 with one node and oncotype of 14. Her second opinions at dana farber and sloane both said with a tumor that size, spread to node, she'd be crazy not to do chemo. regardless of oncotype. Oncotype is in it's infancy, tests for 15 active genes but there may be hundreds of genes no one knows about yet. The thing about oncotype is it is meant for stage 1, node negative women. Stage 2 traditionally gets chemo. But, the jury is still out on it's appropriatness for other populations of bc. Just ask yourself, would you sleep better knowing you attacked a cancer which has spread to a node even if it's overkill, vs wondering if you treated it aggressively enough? I'd send the inconclusive biopsy somewhere else for a second opinion. Every expert will tell you something different, but you're the only expert on you. I'd do chemo
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Hey ladies, I always thought that if you have positive nodes your oncologists would tell you chemo is a must.? If it was me with a positive node I would not hesitate for a moment.
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lovetorun: What was your Oncotype score? I'd agree with the others who advised you to get another opinion. I know more opinions can be confusing, but they may also provide a different perspective, which might help in arriving at a decision. I ended up getting four onc opinions before I made a decision.
lisa-e makes a good point about whether they did Oncotypes for both tumors.
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Most definitely get a 2nd opinion. Have you heard of NCCN.org. It's supposed to be the standard guidelines for treatment of breast cancer. I've talked to a a lot of women who work in the medical field and they've told me that most oncologists use this information as a guideline for the treatment they recommend for their patients. All breast cancers are different and oncologists are not God and they don't have a photographic memory. I've been told this is one of the main sites they use when recommending treatment for their patient. I've used it myself while looking for info for my mom's breast cancer and at first I thought the site was too big and too intimidating. But after a few visits I discovered it was very helpful. Just go to the search button and type in breast cancer guidelines. It'll bring up a pdf document to view. Take your time and find the one that applies to you or the closest one that applies to you.
I would for sure get a 2nd opinion and research, research, research. I believe you'll know in your heart the right course for you once you learn more and ask questions. This has got to be one of the hardest decisions ever. Let us know what you decide and know I'm praying for you!
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Hi, I am not as young as you I am 62, I just finished my first chemo yesterday. My oncotypedx was 37 and I am a grade 3. My surgeon did the SN biopsy but it did not work so he went ahead and took 23 nodes before he sewed me up not wanting to have missed anything. Nodes were all Neg. Clean margins. I did not want to do Chemo. I went through chemo with my dauther who was 19 and had hodgkins. They found the HD when she was pregnant with her first child. The ONC and the OB fought over when to take the baby so she could start Chemo. Took the baby 6 weeks early and all turned out well. Daughter is 32 and GD is 13. That was back in 1998. I was pretty scared after I had saw what she went through, but things have changed a whole lot.
My ONC told me we with my scores and grad and IDC we have no way of knowing what is floating around and just waiting. So here I am on my Journey. After I saw my scores it was a no brainer.
Hoping for peace for you and answers
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In the end you have to follow your gut, but of course it is important to gather as much info as you can first then spend some quiet time weighing it all out. Here is wishing you the right insight and guidance to make a good decision for yourself.
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As has already been said: everybody is different, and nobody can actually make this kind of a decision for anyone but ourselves. But FWIW, I did chemo (6 rounds of TAC in 2009) -- didn't want to; I allowed myself to be talked into it. The FIRST treatment was shockingly nowhere near as bad as I expected -- it was hard but doable. The second treatment was a lot harder, but still tolerable (barely). The third treatment was horrendous, I was telling my Pack Rat (who's the one I let talk me into it) I'd had enough, wanted to stop and was sorry I had decided to even try it because yes it IS as horrible as my gut had originally told me! But he said "three down, three more to go" and was making it into a "race," and, (a) I felt so awful I couldn't imagine it getting worse, plus (b) I was now damaged goods anyway (brain dead and bald) -- so I said OK, I may as well complete the treatment. I finished the whole six rounds. I was wrong here on only one count (a) -- it got MUCH MUCH MUCH worse with treatments 4, 5 and 6, and I'm sorry I didn't listen to my gut. I know I'd be dead now if I had (my diagnosis was Stage IV out of the gate), but between the chemo and AIs I just bought myself two years of life of which so far, only a month and a half has been WORTH living, and believe me, when the person who used to be you is buried under all the side effects, pain, fatigue and brain death for months and years, it's really really hard to imagine that it will ever stop and you'll ever enjoy anything again. And the only reason why I finally feel good now is because I'm between treatments -- I got to go off the Arimidex a couple months ago, started feeling better about a week and a half to two weeks after stopping.
But of course, that's just my take on it -- what you do is up to you. You need to not only do your research on treatment specifics and decide what kinds of SEs you're willing or unwilling to tolerate, but also make decisions on what you consider more important -- staying alive longer, or having a life you consider worth living. In a situation where I can't have BOTH, for me I'd rather have quality over quantity. And because I didn't listen to my gut, I had two years I wish I hadn't had to endure. Just about all cancer treatment is just as bad as the disease itself.
Good luck and {{{hugs}}}, lovetorun.
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Lovetorun Definitely get a second opinion. The first Onc I saw said no chemo..my oncotype RS was 17...highest end of low..I was grade 2 BUT my smallest tumor 1mm that was discovered to be more agressive than the other 3 tumors so my BS PS GYN and second onc I saw said do chemo.
I would be worried too about the node. If you didn't have the oncotype dx it would probbly be recommended. Chemo does take its toll but I did 4 rounds of TC and had absolutely no problems other than the complete meltdown about losing my hair. Definitely Definitely seek another opinion and talk to all your docs..the more advice from medical professionals you can get the better.
Also remember the oncotype RS shows absolute benefit but it doesn't mean you wouldn't get more benefit from doing it.
Good luck with your decision on your treatment plan.
Diane
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lena - just curious about the TAC, and what were the se's. I did 6 rounds FEC in 2008 - I guess the C is the same, don't know what the TA are. Must have been quite the heavy duty chemo, with you in stage 4.
Thanks,
Arlene
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I also wanted to say that it may also depend on what type of BC you were diagnosed with. If you are strongly ER/PR positive, they do say that tamoxifen is your best bet to handle stray cells. It may be something else you can keep in mind if that's an option for you.
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If you are seriously considering chemo, find out the exact name of the drug(s) being proposed for you, google the package insert for those drugs, carefully read through all the information that the manufacturer is providing when you are home and calm, and have time to digest the information that you won't have as you are signing consent forms in your doctor's office. Virtually every drug has that information posted online, go for the inserts from the manufacturer as they will give you the most accurate information without editorializing.
You may still decide that chemo is right for you, but at least you will be aware of and can take precautions to avoid potential interactions that your doctor may not even realize you are at risk for. Things like exposure to children who have recently been immunized with live virus vaccines springs to mind.
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Lovetorun,
I am 46. The tumors in my breast were around the same size as yours. They turned out to be a primary tumor that overtook two lymph nodes within the breast tissue. There has been disagreement on whether I'm at Stage IIa or 1b. My oncologist said Stage IIa and never even offered an Oncotype score. Because I'm premenopausal, and there were two nodes involved - plus a positive margin after MX - the onc is giving me the works: A/C X 4, Taxol X 12. I have five more weeks to go on chemo, and then I'll have rads followed by anti-estrogen shots and pills (long story).
I don't know if chemo is right for you or not. I can only share my own experience. Like you, I was hesitant about chemo. But, everyone and everything I read said that, at my age, at this stage, with a grade 3 tumor, chemo is necessary. When the first chemo treatment landed me in the hospital with an infection, I was ready to quit right then. But, the doctors were adament that I really needed the chemo. I don't know what I would've been offered nor what I would've decided if the tumor grade had been lower.
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lifeiswonderful, I am so sad to hear how your first round of chemo went for you. I think they did not do the Oncotypedx on you because you were grade 3 and involved nodes. I am grade 1 and we did not think that any nodes would be involved so that was a surprise to us all. Luckily insurance covered it because I was then told it may not. I too am premenopausal and know that chemo or tamoxifan will ruin that. I did not let them take the rest of my nodes so I don't know what may be left and lurking. I am just confused that a grade 1 cancer was able to make 2 good size tumors, get in my blood vessels and my node. It obviously had lots of time to do its thing. I hope the rest of your treatments have been different than your first. You will get through this....and you will be ok! all my best.
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One bit of information that you did not mention, lovetorun, is how ER+/PR+ you were (and that is usually expressed in a percentage on the path. report.) The higher the percentage, the more the Tamox. can work its magic.
Other than that, I have to fall in with the camp that feels a second opinion would be worthwhile.
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Lovetorun,
If I had a grade 1 tumor, I would be undecided about chemo, too, but worried about the positive node and everything else, just like you are. So, I can understand your predicament.
For the record, A/C seems to be very roughgoing for many of the women I've met - especially for me! - but Taxol (so far!) has been much easier. Some women have a bad reaction to Taxol, but most of the women I've met find Taxol to be easy, especially in comparison to A/C. I've read about women who've only had A/C and no Taxol, and other women who only had Taxol, no A/C. So, I wonder if Taxol alone would be an option for you, just for peace of mind, or if your doctor thinks Taxol alone would be a waste of time, too. Best wishes!
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If you have a positive node, two tumors, possible lesions and are stage II....I would be really worried about NOT doing chemo (for the record, I did AC and was fine). Definitely get a second opinion; you want to be really, really sure that you are making the right choices and so will want to see the whole picture through several lens. Another thing you could do, is have your oncologist take your case to the tumor board at your treatment center and see that they have to say. Best of luck. Ruth
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Appt with MO today and have decided to do chemo. My Oncotype DX score was 14. I knew it was low but to me, this is the higher side of the low but that is just my opinion. We determined due to my personality that chemo would be the right path for me. I just feel that cancer is just not something to mess with and let get away from you. If the meds are available, I want to do this to make sure. I know there is still no guarantee but there are no guarantees in cancer. I see a chemo nurse soon that will explain everything in detail as well as get a port in place. I believe I will be doing TC. I know that I am not going to have the drugs that have potential risks of heart issues or leukemia. I am sorry to not be very knowledgeable in this. We spoke of so many things and only some things stuck regarding drug names and regimen. If this does sound familiar to anyone, feel free to comment. He did say I will lose my hair. Never loved my hair all my life but now sad to know I will lose it but my 18 yr old daughter reminded me better to lose my hair than my life. Thank you all so much for your stories, your sharing with me, and your knowledge.
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Glad you have made your decision. I think you feel better knowing that you have covered all your bases. My hair is much cuter than before; you might come out of this with the good SE of great hair! Best of Luck. Ruth
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