New here & very confused & scared. What to do?
I sure wish I had found this place sooner, but better late than never. My story is similar to most. Routine annual mammogram found suspicious area, had biopsy the next day, surgery 2 weeks later, mastectomy with sentinel lymph nodes. Not one of the doctors warned me about the terrible effects of this surgery. I was led to believe it was like any other surgery, once the incisions heal you are fine and dandy. Ha! No one said a word about the whole side of my body & upper arm being numb (which apparently may be permanent). Nor about the terrible pain in my armpit. Nor about the fact that I cannot lift my arm enough to even shave my armpit (ewwww!!!). Will I ever be free of pain or regain full use of my arm? The docs say "most women do, eventually" but that's hardly helpful!!
OK, vent over, LOL. From my reading here, I know y'all totally understand. :-)
Here's my big problem right now. We thought beforehand that all I would need is surgery and then hormone therapy. But 4 lymph nodes came back positive. So now the docs are recommending both radiation and chemo. I'm totally freaked out over this. It wasn't supposed to happen this way.... but it did. The radiation doc made a good case for that. Said that just because the closer lymph nodes were positive and the next further ones were negative, that does not guarantee that there are no more cancerous ones left behind, as one might assume. (Rats!) They do not recommend going in again and taking more out, but strongly suggest radiation to the area to kill any cancer left there before it can start growing or spreading. Also, the side effects from radiation are mostly temporary with the exception of heart damage, and he was very confident that they know more now than ever before about doses and targeting to minimize that. So I will probably agree to the radiation.
But the chemo is another thing altogether. I had tons of other tests, blood work, chest x-rays, PET scan, and they found no evidence of any cancer anywhere else in my body. So why does the oncologist want to subject me to a systemic treatment that has horribly severe and possibly permanent side effects? She says it decreases the risk of recurrence by a certain percent. Well, that's fine for her to say, but she's a cancer doc, her only standard is how many patients are cancer-free and still alive after however long. She's not taking into account quality of life. What I'm reading about things like neuropathy, joint pain, and "cognitive impairment" as they put it, frightens me. These things can be permanent. And my feeling is, if I cannot do any kind of useful work anymore, what's the point of being alive? I'd rather take the chance that the cancer might come back, and at least live a full and useful life for whatever time is left. Does that make sense?
So how do you know what is the right thing to do? Did any of you say No, I won't agree to the chemo? How can I make this decision? I'm under so much pressure from doctors and family members to just agree to it. I'm just not sure it's the right thing for me personally.
Comments
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One more thing I forgot, my tumor was strongly positive so I will be put on tamoxifen and that's supposed to kill any remaining cells and keep them from coming back. So why would you still need chemo then??
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Jennie,
One more test that you should consider is an ONCO test. They send out a portion of your tumor and do a special test and depending on the #result, it would suggest if chemo is needed. Mine was sent out, but there wasn't enough tissue to complete the test. Also, make sure your insurance would allow it because it is expensive. Mine was covered but there were no definitive results. My roller coaster ride with BC started in Feb. 2009. Mine was caused by mantle radiation to my chest when I had lymphoma 17 years ago. Also, maybe a second opinion may help. Will be thinking about you and hoping you find peace in your decision. xo, Leslie
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Jennie, the test Leslie mentioned is the Oncotype-DX, but I'm not sure if it's done when you have 4 positive nodes, although your onc will know.
As far as why you want to risk the SEs of chemo (and I was very much where you are when I was blindsided with the final pathology from my first surgery, which is detailed on my bio page), is that right now the bc is limited to your breast and lymph nodes, so it's very treatable. But if any cells have gotten any further into your system, they need to be stopped from setting up shop, so to speak, in your liver or lungs or bones. You have one shot at preventing that, and with 4 positive nodes, your bc has shown you that it knows how to travel. None of us liked doing chemo, and yes, there are potential SEs. But they can be limited with complementary treatment things, and I'd rather have a bit of joint pain than metastatic breast cancer, which becomes an entirely different scenario.
But, by all means, get a 2nd and even a 3rd opinion if you have any doubt that chemo is right for you. I didn't want to do it and fought against doing it. But 4 years later, I'm very glad I did!
So sorry you're going through this. I absolutely understand how surreal it can be to have your pathology come back much different than you were told it would be, and it will probably take awhile for you to wrap your head around it. But keep in mind that early stage bc is very treatable and survivable with proper treatment. (((Hugs))) Deanna
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They don't normally do oncotype testing when you have positive nodes. Most oncs feel that there is no point because chemo is necessary once its travelled to the nodes.
I have been exactly where you are now and I know how terrifying it all seems. Best of luck with your decision. -
Jennie
I am sorry you find yourself here. Like you, after my lumpectomy surgery, with no active lymph nodes, my onco score came back in the gray area-which meant that I had to decide about chemo after thinking it would just be radiation. I liked how the oncologist put it-- "it just makes the bump in the road a little longer"..... but I was totally freaked out....But it took me only a minute to decide when we were able to determine the % chance of distant recurrence on the onco score and with chemo mine was less than 9%...
I think it is standard to recommend chemo with active nodes... I too was strongly ER+ and while my onc is a big fan of the hormonals, she also supported my decision about chemo.
You have to decide--the only right answer is the one that is right for you. I had 4 treatements--A/C--was able to work through it... but I would not want to do it again.... but if it turns out to be right for you, decide and don't look back.
I can tell you that I have never lost a night's sleep since because I really felt that, given the data, the research I did and the support of my entire medical team, that I did what was best for me..... that is the best you can do.
Best of luck.
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Thank you all for the replies. I just found out today that my test was negative for the BRCA1 & BRCA2. While that is a relief, it doesn't make my decision any easier. I was thinking if it was positive, I would definitely agree to the chemo. One of the sites I found through here gave percentage chances of survival after 15 years and it said in my case there would be about 15% better chance with chemo than with hormone therapy alone. (For some reason it didn't include radiation or none, in that calculation.) Which is a pretty big deal. But again I say, it's not enough to just "be alive", what about quality of life? If it would impair my brain to the extent that I couldn't do my job or cause chronic pain to the point where I couldn't function, then why be alive? So I'm still very confused and uncertain about this terrible choice.
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Hi Jennie
I did not have any positive nodes and no LVI. But, I had a large tumor (just over 4 cm). My Oncotype score was 16, which is pretty low. My MO was on the fence about chemo. I know if I had even one positive lymph node, combined with the fact that I'm considered young (was 43) she would not have been on the fence at all. In the end, after much discussion, she recommended 4 TC, which I did. I finished in March of this year. I have no residual effects (that I know of) at this time, and worked through chemo.
I do not regret for one minute doing it. -
If it helps, I have no lasting effects from chemo. No pain, no cognitive issues, etc. just hair loss! I actually tolerated chemo quite well. I worked throughout.
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Because of one positive lymph node, I had 4 Taxotere/Cytoxan chemo treatments which finished on May 7. There are no lasting effects that I am aware of, my hair is growing back nicely, and I feel pretty normal again. Chemo is not a walk in the park, but I know I did everything I could to prevent a recurrence. I had exactly the same thoughts as you about all the possible side-efffects, but got only a few of them. These days the side-effects are very well managed with appropriate medication. I never even once got nauseous. It is doable.
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Jennie93- it is not necessarily true that they will not do the Oncotype test if you have a positive node because I did and they did the test. Mine was a micromet in the SN but my ONC said since it was very small she wanted the test done. Fortunately my insurance paid for it because yes it is very expensive but you also need to know Genomic Labs will work with you at a reduced rate if you have to pay for the test. It is a major breakthrough for treatment plans for Oncologists who are on the fence about treatment. My ONC told me they know they have overprescribed treatment and subjected some women to treatment they could have avoided had they had the test. It takes about 10 days to 2 weeks to get the results back. Believe me I was a nervous wreck waiting on the results. My BS said I would get chemo because of the node involvement but fortunately our ONCs call the shots not the BS. When I finally got the results gotta admit I was crying. I was so scared. My BS' nurse called me at home and the first thing she said was good news...then I could relax. I had to ask her what the score was because the report back from the lab was my cancer was smaller than first thought and non-aggressive. My score was 11 which is low. That test saved me from chemo. Would I have had chemo? Probably. The choice of course is yours. It is your life after all. A friend who is a nurse at St. Jude elected to have a double mastectomy and chemo. The drs thought she didnt need it but she convinced them she did. They can advise you but the ultimate decision is yours and yours alone. Once you make it though dont look back or second guess yourself. Good luck. Keep us posted.
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Thanks to all replies. My oncologist is definitely not on the fence, in fact she seemed a bit surprised that I would even question it. And once a week, a bunch of cancer docs get together and present cases for discussion. Apparently they discussed my case this week and there was not one dissenting opinion. So they all agree, that considering the characteristics of my tumor and the positive lymph nodes, that chemo is needed. As she put it this is the "standard" treatment which is "proven to give superior results". She also said again that permanent side effects are quite rare and claims that many of her patients keep right on working right through treatment. (I take that with a grain of salt. LOL)
I'm just still very much afraid and unsure. :-(
So hearing from everyone who has gotten through it, is really tremendously helpful.
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I am one of those gals who worked throughout chemo and rads. It wasn't always easy but it was certainly doable. No grain of salt here!
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I had the OncotypeDX test before I made a decision about chemotherapy. I had only one positive node, and that was a micromet, but the printout I got with my test result showed statistics for 1-3 positive nodes and for 4 or more positive nodes. If your insurance will cover the test (and maybe even if it won't) I suggest you consider having it done. When I got my test result back, I no longer had any doubt about doing chemo. I think there are also many here at bco who got their result back and no longer had any doubt about skipping chemo. I think it is true that for four positive nodes, chemotherapy is the "standard of care", but having the test results may reassure you that you are making the right decision. Your age and the specific type of cancer you have may also be influencing what the oncologist and the tumor board are recommending.
I won't say you are wrong to take quality of life into account, but also remember that having a side effect, even a permanent one, doesn't necessarily mean the end of your ability to do useful work. I hope, if you do decide to do chemo, that you won't have any debilitating long-term side effects, but even if you do become disabled, in my opinion, there is more to life, and to your value as a human being, than the ability to work. Eventually most of us will probably get to the point, whether due to cancer or some other cause, that we are no longer able to work. I don't think that means there is no more purpose to life, but rather that the purpose has changed.
Best wishes for a successful treatment!
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Def agree with curveball...have the Oncotype test then you will know for sure.
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Jennie,
I think with 4 positive nodes you do not need the ONCOTYPE test. You really need to do chemo. And I know you are scared, we all were, this whole thing SUCKS. But I would say that it is almost certainly not going to be as bad as you think. It's no fun and it's emotionally draining as much as anything else, but the vast majority of people do ok with chemo with no lasting effects. I'm 10 weeks out from chemo and am just about back to normal. My brain works fine, my hair is almost back to a pixie cut and the only lasting effect is some achy feet which are getting better every week and I am sure will be back to normal soon. During the chemo itself I generally felt bad for 1 week (threw up once) and then felt mostly normal for the next week. I went every 2 weeks for 8 cycles. My biggest issue honestly was constipation.
Of course I am overstating things when I say you don't have a choice, you always have a choice. But I don't think you should turn down chemo because you are worried about the side effects. They really, really aren't as bad as you think they will be. And, worst case scenario, if you are one of the people in the minority who have an unusually bad reaction to the drugs, you could always stop. And the chances are you will feel crappy but you will make it through. And you will know that you have done everything possible to keep this horrible thing from coming back.
BTW, I had 1 positive node and given my age (39) my doc said no onctotype test for me - straight to chemo. I too had really been hoping and expecting to get away with surgery only.
And on your mastectomy recovery, unfortunately I think much of the numbness is permanent. Mine has gotten slightly better (my surgery was in early February) but I don't think will ever completely go away. But the range of motion issues I do think are fixable with exercise and stretching. Have you tried physical therapy? I did a few sessions and it made a big difference. Our bodies are remarkably resilient despite the mess with are putting them through to rid ourselves of the cancer.
You WILL get through this! I wish you the best of luck with your decision.
Rose
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Thank you all. I guess I am pretty much resigned to my fate now, and at peace with the decision. But hearing from everyone who has been in the same place REALLY helps so much.
They threw me another curve ball, after originally saying that everything looked fine on the PET scan, a week later they took another look and decided there was "something suspicious" on the other breast and I had to go in for another ultrasound and biopsy. To say I was not a happy camper would be the understatement of the year! At the same time, knowing what to expect having done it before, it wasn't that bad, and the doc even said that he really thought it looked like something benign (believe me he sure didn't say anything like that the other time), they just want to be absolutely sure. I reckon if it was anything the least bit bad, they would want to do more surgery before moving on to the next phase of treatment. Sigh. Will get results mid-week.
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Oh and yes, I'm going to see about the Physical Therapy, our hospital even has free classes for anyone who had surgery there, you just need your doc to give you a referral. When they call with the biopsy results I'll be sure to ask for that.
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Jennie, I had chemo 7 years ago and I have no late effects. Totally went back to normal. I really struggled with the decision too. Reading about side effects and long term effects make it really scarey, but most people don't get them. I worked every other week. Took off the week of chemo the worked the next. I could have wotked a little more than I did, but I wanted to make sure I could rest whenever my body wanted to.
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Jennie, so sorry you are going through this. Everyone is different but I want to let you know that I did work through chemo and have few lasting side effects. My last chemo was at the end of May; I have some mild joint stiffness that lingers but it is slowly fading. Anyway none of these decisions are easy, but do what is best for you in the long run. Side effects might be challenging to live with, but it's better than dying young from cancer.
I'm also having to do radiation despite having a mastectomy too. I'm not happy about it and I seriously thought about not doing it, but I know in the long run it will not be a big deal, and it'll be extra insurance for a long life.
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Got the results of the 2nd biopsy. It's benign, nothing to be concerned about. So that's a relief! So now the oncologist wants to proceed to the next step - chemo. She had me get an echocardiogram yesterday (apparently standard procedure beforehand to make sure my heart is healthy) and made an appointment tomorrow to sit down and talk about it, and presumably schedule the first one. Scared.....
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I know a few gals who went through chemo and are just fine without SEs. There are different kinds of chemo as well. If you were to go to stage 4, and I hope you never do, then you would be looking at lots of chemo and then SE!!! My friend is stage 4 and has done about as much as she can...almost chemo all year long....and is probably doing her last set. Despite this, she has done well despite some of the SE you listed and they often go away or get less severe too. In your boots, I'd listen to the oncologists. Could you ask them about taking metformin while taking chemo as it appears in makes chemo so much more effective in killing cancer cells. You may want to look that up......it was even on the evening news a few days ago. (((HUGS))) it's a bloody bad road to take!!! We mostly get through it! Good luck Jennie93..thinking of you these tough days ahead!
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Jennie, if you haven't already, you might want to look into Penguin Cold Caps, if you're concerned about losing your hair. I didn't know about them when I did chemo 4 years ago, but they sound worth considering. You can search for them here, as I know there's at least one on-going thread about them.
You're going to do fine and be fine! But be sure to ask your onc which chemo regimen you're getting and why he/she is recommending that particular one. Knowledge is power. Deanna
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Well, I went ahead with it. First dose today. Managed to get through it without any panic attacks. Feeling OK for now, several hours later.
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Jennie...I'm sure this wasn't an easy day for you. I just wanted to send you a ((((hug)))).
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Congrats Jennie, you are one step closer to being finished. Wishing you minimal side effects!!
Rose -
Hi Jennie - I have just signed up specifically to say I think you are 100% doing the right thing. I have recently had my second chemo and am happily working through my treatment (but have a very understanding boss and luckily work from home anyway) - so I log on late when I don't feel great, and always pencil the 2 days following chemo as 'off'. I have been very lucky and have very few side effect (sore mouth combating with lovely ice-pops, and sicky feeling in the first two days). Have also gone nearly completely bald - but think it gives me a new sexy look :-)
A friend of mine was NOT offered chemo as her cancer was only in the breast. After 2 months of being given the 5 year all clear - she has had bad news that her cancer has spread and is now only 'containable'. I feel very fortunately to be given chemo and to be given the best chance of fighting this and preventing the 'little buggers' from getting a foothold anywhere else.
Wishing you all the best.
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Thank you so much aminihan.... that almost made me cry..... I had been doing great, keeping a strong positive attitude, like "bring it on, we are kicking cancer's butt, one more down means that much closer to being done," etc..... but then about 4-5 days after chemo #2 I really crashed. Not expecting that!! Not so much physical as mental. Now I can say I understand what people with depression are going through, in a way I never could before. I just want to lay down and cry. It isn't even thaaaaaatttt bad physically, I've escaped (so far) the really awful stuff like vomiting, diarrhea and neuropathy, but I feel like crap, so tired and everything hurts so much. And I just started feeling like, why am I doing this again??? I know, I know..... for my kids, so I will be around to see them grow up, be around to see my grandbabies some day, and all that..... but it's just really tough right now.
So thank you so much for the encouragement, it came at just the right time.
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Hi Jennie,Just come on here and read your posts. I have chemo no 2 in six days. Like you was fine with first one but really apprehensive about second :-(
I had choice of just rads, or chemo and rads. Onco said it could give me 2 percent more of a chance for long time survival. There was no contest. I want as much chance as possible.
You are being really brave and positive, hope next time is better.
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Just popping in to let y'all know that I had my 6th and LAST (woo hoo!) chemo a couple days ago. I want to thank everyone again, without your support and encouragement I'm not sure I would have got through all this. But now I can say you all were right, it was not as bad as I feared, not at all. Actually #2 was the worst, go figure. I learned to expect the weird "dark place" for about a week before each treatment, can't explain it, but learned to live with it. Just keep reminding myself, "this too shall pass" and it did. Now I can look forward to feeling better and being all done with this chapter of my life. Thank you all again!
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Wow, Jennie.
Just started reading this thread. To read you going from the beginning and then to see your beautiful last post....what a blessing! You did it!! Do you feel like you just crossed the finish line of a marathon?! Proud of you!!
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