Local control and long term survival
Having never posted before, I'd like to say it's an honor to be amongst all you inspiring peeps. I'm glad I happened upon this place for sure..
In a nutshell, I was diagnosed with Stage IV when I was 40. My first pet scan revealed areas of uptake in the lymph nodes under the arm, in the neck, behind the chest wall as well as an area on the first rib. My tumor was 5.5x5.8 cm, grade 3, all on the left side. Started chemo right away, went through 7 rounds of TAC. Meanwhile I researched, had MANY scans/MRI's, researched more, had second opinions, ect. The more I learned, the more inconsistancies I was discovering. I was (still am) a difficult patient in their (surgeon, onc) eyes no doubt. I was asking questions and I wasn't getting clear answers from them. Needless to say, they were pushing HARD for a quick surgery but there was enough doubt in my mind and I said NO. If I was stage IV then I wasn't going to go through the trauma of surgery. Not once did they mention to me that surgery is only for local control and does nothing for your long term survival chances. So eventually I changed doctors, more scans/mri's and so far since that first pet scan in Oct 08, nothing has been seen since - anywhere (knock on wood). My new oncologist was having a difficult time understanding my reluctance in surgery and come to find out, I was NOT stage IV, but stage IIIC. Well this changes everything! What they called mets, was simply arthritis. Little did I know a pet scan shows ANY inflammation, not just cancer. So here I am, one year and 6 months out and am just now scheduled for bi-lat mast in about 2 weeks. I am still not convinced that this surgery will change my long term survival seeing as how so much time has passed. My gut feeling says don't do it. I am not at all comfortable with going through with it, once it's done- it's done. To make matters worse, after 18 years my boyfriend figures out I'm not the one for him, conveniently 6 months after being diagnosed. Perhaps this is a contributing factor to my reluctance. It's hard to keep the emotions separate. Any thoughts?
Comments
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I don't really have any advice, but just want to welcome you here. Sounds like you have had quite the time of it these last 18 months. (we were dx the same month!)
For what it is worth, the surgery is not nearly as bad as you might think it will be. If your Dr is recommending it, I would think it is probably the way to go.
Wishing you all the best!
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Yes - you have had a very bumpy ride - and there is no doubt that oncs make mistakes when they interpret scans. A recent study in Europe (Holland I think) did a big review of literature and analysed the overall survival of stage IV patients who had surgery vs those who didn't. The study showed a definite bias for longer survival for those who had surgery vs those who didn't. As Kerry said - the surgery - while no fun - is not as bad as you would think and statistically it seems that it does give an overall survival advantage - which may not seem like much right now - but believe me - it means a lot as time goes by. You will find a lot of information on this site and a lot of stories showing how hard people struggle to fight this disease. The boyfriend has sure picked a miserable time to let you down - but do everything you can to be around for a long time - help him regret his decision by living a long and happy life without him. There must be some reason the drs are recommending surgery - stage IIIC while better than IV is still pretty serious - surgery and follow up is probably the best path to that long and happy life
Good luck with whatever you decide.
Fidelia
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"Not once did they mention to me that surgery is only for local control and does nothing for your long term survival chances."
i beg to differ.. cancer spreads from a point outward.. if that point is gone then the oppurtunity for progression is lessened.. that's how I see it.
Our situations are very similar.. i had a lot of local progression.. just about stage IV. ,, who knows?
good luck with your decisions and congrats on the stage III status.
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If you were Stage IV, but you're not, the evidence is conflicting about whether surgery helps. I think it would have to be based on where all the cancer is. However, you are Stage III, which means if you don't do the surgery, chemotherapy and radiation to reduce the risk of the cancer spreading, your risk is higher that the cancer will show up somewhere else later. No doctor can tell you for sure what your future looks like.
I'm sorry to hear about your boyfriend bailing on you. I wouldn't base any of my treatment decisions on that situation, though. A good man will stay through thick and thin.....
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You've been through a lot and I am so sorry for your struggles. While my situation doesn't mirror yours I do know (especially now) that I would do everything in my power to fight. I had a bi-lat in June and it wasn't bad, the pain was much less than other surgeries I've had and in all honesty it was more inconvienient because of the drains than painful.
As for the boyfriend.........If he can't be there for the tough times, then he's not worth it. I know it's hard to have to deal with that on top of everything else, but he's not worth it. Right after I was diagnosed I read somewhere that this disease will weed out the people in your life - the bad ones will leave and the good ones will stay. And.......I have found that to be true. Surround yourself with good people, people that love you and will be there for you and don't waste your energy on the others.
Good luck with your decision (((HUGS)))
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bambers88 ~ I'm so sorry you have had to deal with such a struggle. I will not give you any advice but, rather, encouragement to try and trust your oncologist. If he is recommending surgery, there is a good reason. You have a good size tumor that is growing cells within it ever day. Those little cancer cells are just multiplying and multiplying. Think of your body as a nice green healthy lawn and there is one dandelion with the puffy seed pod just blowing off little seeds in the air and landing in different parts all over that lawn. The dadelion should be taken out before it seeds the rest of the lawn, so more don't grow, and before you know it, there are little yellow flowers all over that once green lawn, and each little yellow flower is turning into that little white puffy seed pod, ready to keep overtaking that lawn. Cancer cells are the same way. They start in your tumor, and the little cells within shed into your lymph nodes and also can get into your blood vessels and other tissues. Your lymph nodes can then become infected with the cells and spread them throughout your entire blood system into distant organs of the body. Breast cancer cells like to spread up the nodes in your clavicle area and to the bone, brain,spine, liver, and even into your throat. These cells like to cluster and form new tumors also. It's just a constant growing phase. If your oncologist wants you to allow a breast surgeon who is skilled in removing that cancer seeding tumor, then please consider taking his advise. Mastectomy is do able and not a really painful surgery to deal with. There is always the morphine pump too
I too had a 5.2 cm tumor in my left breast. It spread to 2 lymph nodes. My breast surgeon removed my breast and 17 lymph nodes to make sure there were only 2 infected nodes. The tumor was shown to be clear of margins and had not yet had a chance to spread into the surronunding tissue and blood vessels. I am hopeful that the mastectomy and node dissection will have gotten every cancer seed that was multiplying from that tumor, and not have the chance to go and "seed" other parts of my body. So that is my opinion, and welcome to this fine group of women to share your breast cancer journey with. Oh and as for the boyfriend, if he ends up getting a guilty conscience and comes around again, don't make it easy for him. Better to loose a guy who can't stick with you for the hard times.
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Apple - your reply prompted me to explore more of the vast information on this site.. I did find some research on the topic, another reason this forum is invaluable. Here is the link -
http://www.breastcancer.org/symptoms/new_research/20090922b.jsp
The reason I had said no to the surgery are many. In all the books/ literature I was given (tons), not one recommended surgery at stage IV. When I attended a BC symposium at the University of Tucson Med Center I got the chance to ask the team of docs why that was. First thing that was said is ' How do you know your truly a stage IV? Did they biopsy the bone to prove that? If so, the reason is that the morbidity rate is extremely high, so in the case of stage IV, surgery isn't (generally) recommended - it depends on the extent of disease.' Oddly enough, she hit the nail on the head from the get go. Turned out I was not stage IV.
My biggest concern is this.. My onc tells me there just isn't much information on how effective surgery is after waiting so long, meaning the flowers Shanagirl speaks of have had plenty of time to seed. It could already be too late. But on the other hand, I did have a complete response from the 7 rounds of TAC so she (my onc) says "lets go for the cure".. Surgery is scheduled for Mar 23.
And for the record, I wouldn't trade my time with him for anything. Seems strange, but I have a feeling he just may have saved my life by doing what he did, I don't think I would have been able to do surgery if I was still with him. So Fidelia, I hope your right. I hope he regrets his decision and I hope to be around to see it..
Thanks everyone
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You can do this, bamber. Keep us posted on how you are doing? I like your attitude about your ex boyfriend. He was in your life for a reason.
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Wow Bambers,
What a great post. You've done a lot of thinking about a lot of things. I'm full of arthritis, so I'm just lucky my docs didn't read them as "mets". And as for your guy, I think I know exactly what you mean. And I think maybe he did save your life, too. Glad you're going to be around to see how the story ends! Good luck with the surgery!
Sue
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Geez, no one told me about the morphine pump! Hot diggity I just might make it after all..
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omg is all I can say-I am over the top mad for you. I just met someone who was told they were triple negative and it turns out she had a gut feeling she wasn't-they retested her and guess what-she is er and pr positive-so of course h r treatment is totally different. I don't have any good advice but I would think about going to a place like MD Anderson in Texas. Also, if you have further problems PM me-I have someone that might be able to help you as something similar happened to her and she is now a bc consultatant and researcher.
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if it makes you feel any better bambers.. i dated a guy for a while.. 3 years or so. Not only was he a drinker, he passed off some counterfeit money to me after we broke up.. (when i deposited it in my bank, all hell broke loose and he went to jail)
...a couple years later I found out he was married and had been all the time. Oddly he was the only guy I dated in 14 years and i thought he was special. (just another felonous crook, cheater and addict and i thought he was cool)
did i ever feel like a fool. i should have listened to my parents.
good luck on the 23rd.
Diagnosis: 5/10/2008, IDC, 5cm, Stage IIIc, Grade 3, 4/9 nodes, ER+ -
I really appreciate that Pure. I can use all the connections I can get. I will PM you for the info. As far as the MD Anderson in TX, believe me if there was a way, I'd be there. Although in my honest opinion, I don't think there is ANY doctor who is willing to spend enough time with any one patient to THOROUGHLY take down all the facts from the beginning, to anaylize all of the clues and hunches that we as the patient already know, to paint a big enough picture of any one person .. instead we are fed tiny bits of info at a time, confused, scared and left chasing our own tails. It's a rotten feeling of despair that will never be relieved. All I know for sure is that I've got SOMETHING in the pit of my stomach, I just can't figure out if its a gut instinct or plain ol' fear..
Nuff said..
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bambers88 -
Thanks for joining! You've already taught me something - I wasn't told that PETs reveal any inflamation. So everytime I pull out my PET reports and see the "uptake at ...." I was assuming that it was cancer related. This makes me feel much better.
My first appt with the surgeon is March 18th. It's unclear whether I'm through with chemo (potentially 3 weeks left) so I don't know when my bilat is going to happen. But I understand your resistance to surgery if it's unclear that it makes a difference. I just don't like the idea of cutting into the body and disrupting the whole system unless there is a definite gain. But as stage 3'ers it does help our overall survival. So here we go....
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