If you are not Stage IV but have questions, you may post here
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Gardengumby:
I have had nodules show up on scans in the last two years - they are non-malignant apparently and are "just there" - here's hoping you get good news too.
Hugs, Sandy
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Thank-you all so much. I'm really scared right now - hopefully for no good reason. I'll see my oncologist tomorrow. I want her to schedule a PET scan, as that will clear things up (I is or is not stage IV). Not crazy about all the radiation that introduces, but right now I figure the stress probably isn't doing me a whole lot of good either.
If the nodules were well defined, I wouldn't be as worried, but 3 of the 5 nodules are "ill-marginated" which doesn't bode all that well, I don't think - not that I really know anything...
.I have a life-long history of asthma, so know that there is a possibility that these are caused by a combo of the PE's and/or asthma, but the head never takes the positive direction - it immediately aims for the worst possible outcome donchaknow... on the plus side, if it is stage IV - definitely not good, but like I told my husband this morning, my aunt lived with stage IV for about 15 years - so he's still stuck with me for a good many years regardless.
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Since this a thread for questions, though - not worrying - here are my questions...
I've been on letrozole for 6 months, preceded by approximately 6 months of tamoxifen. What is the "normal" (if there is such a thing) medication list for stage IV. If this should turn out to be mets what can I expect? Chemo? Rads? medication? I feel like a newbie all over again.
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Ladies, thank you SO much for being here and answering questions. I have one more chemo treatment of eight left, then BMX in May. My scans were all negative at diagnosis in October, but then of course, I don't trust them, just like I don't trust my SNB.
How soon would I start having scans and how often? I am probably going to be changing MO's for several reasons (he's become unreliable and someone in his office told me that he has personal problems and is very distracted). I once asked him about frequency of scans, wishing it would be safe to have them constantly. I said something to the effect that, afterall, if there are mets, isn't it best to find them right away, so they can be addressed promptly and hopefully prevent further spreading? He said NO, IT ACTUALLY DOESN'T MATTER... I find this reply very hard to swallow and do NOT want to believe it!!!!
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"No it doesn't matter"?! He said that to you? Oh, jenlee, to have a doctor like that. When my onc was away last fall, a GP filled in for him and she said something similar to me about surgery - "Well, we find that it doesn't change the outcome." I felt like she was saying go home and wait to die. The worst part? She was holding scan results that showed my cancer was responding well to my chemo and accordingly to a nurse I know my report showed that my response was almost a miracle. A good onc should listen to and address your concerns, not dismiss them. I think you are right in looking for a new MO. One thing I have learned from this experience is listen to what your body is telling you. Here's hoping you find a great new MO and that you stay cancer-free!
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jenlee- I think I can clarify what your doctor is saying. I had the same question and even Googled what most places recommend. This is what they mean - say one is symptom free of any mets. Then one begins to feel pain in the back or exhibiting a dreaded "symptom". Then they do the scan and say it shows mets. The doctor means that had that individual come in a few months earlier when there were no symptoms, the "outcome" or prognosis doesn't really change. This is actually a positive thing and not a bad thing. It means that chemo for shrinking a tumor is exactly the same whether that tumor was detected a time "x" or time "y". AND likewise, the prognosis is the same. I know it's kind of confusing, but if you google Sloan Kettering, they have the same recommendation --statistically, routine scans don't extend life if you are NED. (And like I said, take it for a positive and not a negative thing.)
I hope I'm correct in the interpretation - sorry if I';m not, but that's how it was explained to me. I' too, wish we could have routine scans to see where we are. Right after I finished chemo, my oncologist wanted to do scans and I refused though. I felt that it was too soon and the likelihood of something popping up right after chemo when I'd just had scans a few months before were small. Now however, I find myself wishing she would do them (about 18 months since I had my first scans). The reason she suggested it is that I was uanble to take tamoxifen due to a blood clotting disorder.
Remember that regular, routine scans expose you to a lot of radiation;(the exception being ultrasounds and MRI's) so that's a factor also in making the decision.0 -
Gardengumby - I'm not sure how lung mets would be treated, but all the other meds are pretty much the same except for a few such as faslodex (an antihormonal only for mets). I'm sure someone with more experience will chime in. Good luck and I hope you don't have to join our club.
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calamtykel, I'm still somewhat confused. I guess what I'm thinking is if some small bone mets are found early on, vs. finding when there are extensive bone, brain & liver mets, there might be a big difference in importance of finding it earlier?
So what are recommended/standard intervals for scans after treatment?
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Jenlee - there is a topic on BCO specifically about this subject, but I can't remember which thread it's on. It seems counterintuitive, but overall finding mets early doesn't make too much difference. I can't really explain it, but the way I understand it is that I may live 4 yrs knowing I have mets because they were found early. However, if my mets were found 2 yrs later and I lived for 2 more yrs, I still die at the same age, I just knew abt my mets for less time. Clear as mud, huh? Someone with more understanding will explain it better, but so far there just isn't effective enough tx to make catching mets early important and scans are far from reliable, unfortunately.
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Jenlee - I was rereading your earlier post about hoping that if mets are discovered early, spread can be prevented. Unfortunately, this isn't how mets work and they WILL spread. It's what they do and why they got out of the breast in the first place. How fast they spread and where they spread is determined by your treatment and response to such and the pathology of your cancer. But, eventually, all mets adapt to your tx and you have to change it until there aren't any more txs to try or your body can no longer handle the txs. This is why early stage bc is a completely different ballgame from advanced breast cancer.
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Gardengumby, I have lung mets and am being treated with Faslodex. So far, so good. Stable since mid-summer.
As others have stressed here, lung nodules are extremely common and usually benign. See my profile for details of how my mets showed up. Perhaps a PET will set your mind at ease. See what your onc says. (I'd write my tale here, but I have to get dressed and outta here for an appointment.
Good luck!
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thanks so much Tina2. I'm hoping for benign! I see the oncologist today, and am hoping she will schedule a PET so that I can know more. If the nodules had shown up on previous CT scans I'd be less concerned, this is the 3rd CT I've had in the last 1.5 yrs. Anyway, still hoping for the best. I told my hubby this morning that I'm pretending everything is fine.
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I have a question for those of you with bone mets... When you have a blood chemistry panel done, are your calcium levels usually high? Thank you !
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Minxie - my calcium levels are always normal.
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My question is what is the consensus about removing our ovaries if you are er positive. My thought process is that should the cancer feed off of estrogen why not give it less to eat? Can I get some feedback as to whether you all had them removed and whether it was the recommendation of your onc? My onc said not to have them removed cause it ages us about 10 years. I say I would rather age the ten years over a more serious dx.
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Well, chemo put me into permanent menopause so removing my ovaries wouldn't have added any benefit. And, the ovaries aren't the only source of estrogen, either. So, I think it depends on each woman's situation: is she at risk of osteoporosis, heart disease, recurrence? What is her age at dx? All these factors and more must be considered so it isn't as easy as saying the benefit of removing one's ovaries is definitely worth it over the risks. For instance, studies are showing a slight benefit of AI's vs Tamoxifen for preventing recurrence, but women who were on AI's the full 5 years or longer vs women who spent some of those yrs on Tamoxifen were not living longer because the risks of AI's were mitigating the benefits of preventing recurrence.
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Whatashocker, I was 47 and NOT in menopause when I got my DX. I did not want tamox, so instead I had my ovaries removed and started femara. Both my surgeon and my onc were in favor of removing my ovaries.
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Garden, I don't think there is a "normal" treatment for mets. They start on hormonals and move on to chemos but it all depends on where the cancer is, how big, etc. Lots of different treatments out there.
And, I have lung nodules that are just scarring from an old pneumonia. We all have them so don't go preparing yourself for mets yet.
My understanding is that hormonals work better in suppressing estrogen that having ovaries out becaue ovaries are not the only place your body makes estrogen. It is made in the fat in your stomach, for example. If you use an estrogen suppressing drug, you stop the action of ANY estrogen in your body, whereas if you take your ovaries out, you are merely removing the greatest source of estrogen.
Ask your doctors and don't trust my understanding. I am only weakly ER positive and failed on tamoxifen so am straight to chemo.
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I think that coolbreeze explained it well. I am relatively high ER+ and am on tamox as well as zoladex to suppress ovaries. It is working very well. I am 48 and when asked, my onc is not in favour of removing ovaries at this time.
Definitely a discussion to have with your Drs.
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I am 48 and ER+ and had my ovaries removed. I am brca2+. I also take femara to remove estrogen from fat and adrenals.
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Thank-you all for your support during my worry phase. I saw my oncologist yesterday and she has allayed my fears. She feels strongly that the "new" nodules that were noted during this cat scan were actually there during prior cat scans, but not noted, so is having her radiology guy do a comparison of this one with the one that was done when I was first diagnosed. Also she let me know that ill-marginated when talking about lungs (which is what I was freaked out about) is not the same as ill-marginated when talking about lumps in the breast. The freak-out word for lungs is spiculated. So, I'm all calmed down now and ready to again put this whole cancer thing behind me.
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My oncologist recommended against removing my ovaries because I have a much stronger family history of heart disease and stroke, than I do of breast cancer. She explained that removing them with this kind of medical history will cause additional serious health risks that far outweigh the dangers of breast cancer recurrence. So, I'm sort of "... between a rock and a hard place ..." as my nana would say. However, I have been in menopause since chemotherapy and am maintaining a healthy weight (apparently fat cells can generate as much oestrogen as healthy ovaries), so I have my fingers crossed.
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Phew! What a relief for you gardengumby. There are way too many freak-out words when dealing with cancer. I am glad that you are able to breathe again and move on to brighter days ahead!
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Jenlee: I think that is a horrible thing to say that it doesn't matter. I'm not buying a lot of what is said about scans or testing not being beneficial. Of course the doctors will say that as they aren't the ones dealing with this personally.
Whatashocker: Chemo put me into menopause so my onc did not think it would be any more benefit to removing my ovaries. I'm on tamox, just don't like being on anything though. She does want me to stay away from soy, as I am estrogen/prog. positive.
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Information from Dr. Susan Love regarding screening for metastatic disease. What she basically says is this: Unlike primary cancers, recurrent cancers do not have a better prognosis when they are detected early. Many doctors still do blood tests every three to six months. This may include a blood count (CBC) as well as CEA, CA 15-3, CA 27.29, and liver blood tests. Many patients and physicians assume that using these tests to find metastases early improves outcomes. Unfortunately, we have lots of data that this is not true. This also holds true for the routine use of bone scans, chest X-rays, and CAT scans.
This doesn't mean that we as individuals won't think finding our mets earlier isn't beneficial to us in some way. I'm glad mine was found early because it gives me more time to prepare myself and my family while I'm still feeling relatively well. It just means that it may not make a difference in overall prognosis.
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Thank you for starting this post because I do have questions about mets and I do not want to disrespect anyone on this forum. My question is... I have been having lower back pain for about a month and I am worried it could be mets. The only positive thing is the last time I felt this type of pain I was overweight. Unfortunately due to all the lovely drugs, I have gained 15lbs. I am chalking up the back pain to me being fat. What does lower back mets feel like? Sometimes the pain throbbs (like when your bones throbb after getting a neulasta shot). I'm so afraid... im only 35 (just had bday 2 days ago). Thank you for reading this and any advice is appreciated.
Julie C
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Cynthia1962, thank you so much for responding to my posts. I saw my MO today and brought it up again and he attempted to explain this to me. I left thinking that I still disagreed. Then I came home and read your posts. It is indeed incredibly counterintuitive to me! So the treatment of mets does not slow down the spread? I was getting the impression that some of the stage IV ladies have had their mets reversed by treatment and are NED. Also some have said that they are fortunate enough to be able to have their mets managed as a chronic disease for many years -- just luck or early detection and treatment?
Thanks again to you ladies for your patience and generosity in answering questions!
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Jenlee, finding them early does not change prognosis. Our prognosis is death.
Our treatment can prolong the time to death. But, some respond to treatment and some don't. And, mets become symptomatic usually long before we die.
We have had women here who found their mets when their liver were covered with them, went on chemo, and got to NED. We have women who have found one met in their liver that never responded to treatment and who died.
Finding mets early doesn't change prognosis and it may not change your lifespan.
Most people find their mets when they become symptomatic. Having scans only changes that by a short time, usually, and so the prognosis doesn't change. It's entirely likely that I had mets 2 1/2 years ago, that were treated with my initial therapy and which grew back when I was done. Finding that out at first would not have changed a thing.
That doesn't mean you shouldn't be vigilent and pay attention to your body, but pushing for scan after scan when it's not warranted doesn't change your lifespan. I know women who push for scans every few months for every ache and pain, and at some point, the danger from radiation plays into what they are doing.
Hope that makes more sense.
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"... Routine testing for breast cancer is not very helpful, because it seldom detects cancer before
a doctor can, and in those cases in which it does, there is no substantial benefit from early institution of chemotherapy. Nothing can take the place of a good doctor-patient relationship. As I learn to live with insecurity, the minimal assurance given by routine testing becomes
irrelevant."--Margaret Gilseth, breast cancer survivor and writer
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Jenlee - Research appears to be indicating that the genetics of our tumor determines not only whether we will have a recurrence, but when we will (early or late) and how well it will respond to treatment. So, some of us will reach NED for many years and some of us may not reach it at all and there isn't a whole lot that can be done to change that including catching it "early". I hope that over time you can accept this uncertainty and live your life as if you'll stay cancer-free because, in all liklihood, you will.
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