MIDDLE-AGED WOMEN 40-60ish
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Elimar ...congrats!!!
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Elimar - positive progress! Yay!
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I was diagnosed with Breast Caner last summer when I was 44- stage 1 grade 2-- My surgeon kept telling me because of my age to prepare for chemo, he referred me to an Oncologist. I went to see the Oncologist and he had me meet up with the chemo coordinator who coordinates trials with the Mayo Clinic. He went on to tell me the trial was where they illuminate the drug that harms the heart and then they follow to person after to see if it worked. I asked my Oncologist" and if it doesn't work I am what dead?" His answer was " pretty much" I was shocked!!!
He sent me down for blood work and chest x-rays to prep me for chemo but when I came back, because my niece at age 33 had just been diagnosed before me, I asked him then if I could have the Onco test ran. He looked shocked I knew about it and said " sure if that is what you want"
A nerve wracking month followed and the test came back with an 18. When I went to get the results, he was running over an hour late, ran into my room told me your test is back, you do not need chemo. Gave me a script for Tamoxifen and told me it had been around for over 30 yrs and no side effects.. NO SIDE EFFECTS? Ummm where has he been? Then he told me from then on I could see his nurse practioner I didn't need to see him anymore unless I developed symptoms. Symptoms of what? he never did answer.
I swear he was upset I knew about the Onco test and didn't agree to be his lab rat. Really what good would it do to follow someone who chemo wouldn't work on anyway?
I decided enough was enough I could not trust my life to a guy who acted that way and I wanted to know why I didn't need chemo. A new Oncologist joined the cancer center so I made an appointment on my own with him. Wow what a world of change. He sat me down showed me a chart on why with an onco score of 18 that chemo was more a risk then a benefit for me and he showed me how Tamoxifen would help me the most. We discussed side effects and what symptoms to watch for and then he had me get some genetic testing because of 4 family members with breast cancer this year and my sister passing from stomach cancer at a young age years ago could all be linked. Luckily after waiting 3 months that genetic test for the Ecadharin gene was negative!! YEA!!
So yes sometimes for peace of mind its ok to ask questions and get a 2nd opinion I am sooo happy I had. Why have chemo if a person does not need it. This way if I ever have reaccurance they can still hit me with the big guns and I will know I am doing all I can.
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ndgrri: So glad you spoke up. I also had difficulty getting a oncotype test. But insisted and ended up, like you, with an 18 and for my situation, chemo was not deemed beneficial enough to warrant the harm. We all have to continue to be advocates for ourselves. Our medical team sometimes wants to do everything so there is no argument in the event of a recurrence that possible treatment was missed. I am comfortable with my decision to refuse chemo and hope you will be also.
I am grateful every day for breastcancer.org. There is no better site for good gouge from caring people who are going through the same circumstances. Together, we are a force to be reckoned with!
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Thanks for your story, ndgrrl, which illustrates what I was getting at. Also, age is not necessarily a factor, if the cancer is not one of the more aggressive ones. I had an Onco score of 18 too, and my doc said I would get 2%-3% lower risk against recurrence (statistically) if I did chemo BUT he didn't like to go that route unless the benefit was 5% or better because of the risks involved.
Lakegirl, Since your tumor was bigger than those of the women replying, I wonder if you saw anything on your path. report about LVI (lymphovascular invasion?) I mean a few cells did get to your nodes, but was there anything mentioned that it could have spread into blood supply?
Welcome, navymominohio, and congrats on recently reaching your one-year cancerversary!
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Elimar...I don't remember seeing anything like that. I will have to check when I get home...it is gymnastics night!!!
Also...my oldest is getting a cold! Just what we need as we proceed into this chemo thing!!!
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Hey all,
Got my 2nd opinion from Moffitt today after a very nice coffee with SpecialK -(pic in March surgery thread). Moffitt has recommended TCH instead of ACTH and I am pleased with that recommendation - I will be talking to my MO's office tomorrow to make sure that we get that regime switched. I feel very relieved with this recommendation and am very happy that I DID get a 2nd opinion!!
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elimar, just had to say, that over on that vain thread, you are crackin my a$$ ^! i havent posted their yet, till i am worthy. i might be worthy after i finish catching up.....if you guys let me. i thought i was too smart and brilliant for you guys, but i think i was ...wrong..
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Oh, lookie! It's an article that finds that patients who are in on the decision making process of their own treatments are more satisfied.
http://community.breastcancer.org/forum/109/topic/739321?page=910#idx_27278
I hardly think that passes for news to anyone on these threads.
Now, before you get too happy about this article validating your feelings, check this moronic paragraph:
"The study, published in the journal Cancer, involved 305 patients at
that hospital undergoing radiation therapy [intended to cure their
cancer.](*) Participants had a wide variety of tumor types, including
prostate, breast and lung cancer."Yes, we can figure out that these were people who did not have mets and were receiving rads, mainly after surgeries, as a part of their treatment to kill cancer cells locally, possibly preventing recurrence. However, this wording sure reads like there is a cure for cancer, doesn't it? I got rads. Am I cured now? Because if I am, I guess I don't need to go to the many follow-ups and scans. Guess nobody needs to "Race" anymore either.
(*) I put the bold-face on the part that particularly galled me. Or, am I just reading it wrong? Just that everyone has the good intentions in mind? Well, I know enough women whose road to Stage IV was paved with these same intentions!
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Linda505, Is that 4 rounds of TCH. That's kind of like the "chemo lite" around here. (Not that any of it is light, really.) You can rejoice to have eliminated that Adriamycin!!!
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Yes Elimar - and I am VERY pleased!!
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kathec, You will have to PM me on which particular part you refer to? I have lost track of the many silly quips I make around these parts. They are legion.
p.s. I never let waiting to be "worthy" stand in my way. Ahahaha!
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Elimar...there is nothing on the path report about LVI. There is indication of the Nottingham Histologic score, do you know what that is for?
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Linda - Taxotere/Carboplatin/Herceptin? Or Taxotere/Cytoxan/Herceptin? I had the 6 with the Carboplatin and when I didn't have a complete response I was able go back & do Adriamycin/Cytoxan after more surgery. I was particularly glad to have the Carboplatin since I'm HER2+ also. They did add Perjeta to my first 6 rounds.
Hope you can continue to avoid the Adriamycin since it's known to cause heart damage, as does Herceptin.
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Aha!! Thank MinusTwo; as I was reading the posts I did recall that it isn't Taxol that hurts the heart, but I couldn't figure it out until you typed in Adriamycin. I think that's was did the damage for poor Marybe.....sigh.
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Lakegirl1, The score from that (based on three different criteria) determines what your Grade is. (Google it.)
Barbe, Yep, Adriamycin (on top of years of other chemos) was the last straw for our dear Marybe. I forget if she ended up getting CHF or just kidney failure. I can't remember that exactly, but I remember her smile.
R.I.P. - XO -
funny header, Elimar
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CHF elimar...and then all her organs shut down. She watched them put the IV in that would give her morphine as the pain got worse. They also let her dog (Jake?) come to see her....
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Barbe, Harley
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Elimar - thanks for the picture. Marybe is one of those angels I think of often.
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From the Johns Hopkins breast cancer site:
The grade of a breast cancer is representative of the "aggressive
potential" of the tumor; in a broad generalization, "low grade" cancers
tend to be less aggressive than "high grade" cancers. Determining the
grade is thus very important, and the clinicians use this information to
help guide the treatment options for patients.There are different "scoring systems" available for determining
the grade of a breast cancer. One of these systems is the Nottingham
Histologic Score system (the Elston-Ellis modification of
Scarff-Bloom-Richardson grading system). In this scoring system, there
are three factors that the pathologists take into consideration:- the amount of gland formation ("differentiation" or how well the tumor cells try to recreate normal glands)
- the nuclear features ("pleomorphism" or how "ugly" the tumor cells look)
- the mitotic activity (how much the tumor cells are dividing)
Each of these features is scored from 1-3, and then each score
is added to give a final total score ranging from 3-9. The final total
score is used to determine the grade in the following way:- Grade 1 tumors have a score of 3-5
- Grade 2 tumors have a score of 6-7
- Grade 3 tumors have a score of 8-9
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What really upsets me is that Marybe's chemo will be considered successful because she didn't die of breast cancer. Sort of like the operation was a success but the patient died.
My Dad's chemotherapy for stomach cancer was "successful" because he lived 2 months longer than predicted when he was diagnosed.
What a horrible definition of success.
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Hello All!
Nice to be back! I've caught up on the thread and enjoyed laughing about beavers and a few other things! Sorry that I haven’t posted for awhile! I can’t believe how fast the time has flown over the past 2 weeks! So here is my update - Sat April 12th my DH and I left by train from Toronto to Montreal - my birthplace. I traveled there for business quite often but haven’t been back for personal reasons in over 25 years!! We went to a hockey game Saturday night - my New York Rangers vs Montreal (boo!!). The game didn’t mean anything to either team - last game before the playoffs but it was nice to be there and feel the energy! Of course, my team lost but it went to overtime so it was exciting!! Sunday we walked the downtown core, visit Old Montreal which used to be my stomping grounds growing up - had dinner with a good friend and her husband - very nice!!
Monday we traveled by train from Montreal to NYC. AWESOME! So relaxing! We haven’t been on the train in close to 25 years as well and we just loved it! Comfy seats - no rushing - nice scenery!
In NYC we walked, got a tour of Madison Square Gardens, saw the firs playoff game between the New York Rangers and Philadelphia Flyers - my Rangers won! Woo-hoo! Saw a Yankees game - went to BB Kings Bar and Grill for a Beatles Brunch and saw a Beatles Tribute band - very good! Had dinner with my cousin and her husband - saw the Captain America in 3D which was awesome! Then last Sunday, we took the train home.
The only downside was that we both got colds! ARGH! I still have a few sniffles but can’t complain! We really needed the getaway! It was lovely but of course went by so fast! Hardly thought about the cancer stuff although we did talk about it every so often. At the Ranger game I cried a bit because I felt like I would never be back there and that I was the only one dealing with a challenge. Silly I know - just an emotion!!
Since being home, I’ve had appointments - slept because of my cold, studied my chemo regimen, went grocery shopping, cleaned the house - huh - I NEVER do this!!
Last Tuesday, I had my SYMA (or MUGA) scan. Very bizarre. The tech explained that there would be an IV so I asked where he would put it since my right arm has no veins that you can find and the left should not be used due to the lymph nodes being removed. He asked how my other tests have been done. I responded that I have not had any since surgery. He then asked me what I wanted him to do. What? Really? So for some stupid reason I started to cry. He then changed completely and became very empathetic. He went off to speak with a Dr. who said that he could use my left arm. I wondered later how they do this test for people with no arms - where do they put the IV then?
Anyhow - things proceeded well after that.
On Wednesday I met with my Surgeon who is happy with my healing process. He made it clear that he does not want me to lift any weights until after my treatment is over. We shall see about that!! I miss my weights and want to atleast try to do some light weights after 8 weeks of recovery. I plan to speak with my MO next week.
Thursday afternoon I too got a pixie cut. I also got in touch with Wellspring and registered for a few sessions in May - Breast Cancer support group, Nutrition for Breast Cancer and a Look Good Feel Better class. The first class is on May 8 - the day I get my head shaved and have my wig fitted. I hope that I will feel well enough to go!!
My nephew’s wife gave birth to a beautiful baby boy yesterday shortly after 4pm named Aaron Michael Sandow - 10lbs 3 oz - can you say OUCH? Wife had a C section - baby, Mom and Dad are doing fine!!
Today my hubby has arranged a pre chemo party so we are expecting approx 30 people tonight. Should be very nice!!
Tuesday April 29th is when the fun starts! My port will be inserted at 8am, then I plan to eat, then I have blood work then meet with my MO to talk cancer - ugh!!!!
Wednesday April 30th at Noon is my first chemo infusion. I am scared to death!! I read the chats about chemo with great interest. This is really NOT something that I want to do and am thinking that once the port is in, I am tied to this until the MO decides that I am free! Having said that, my MO is the Head of Oncology at Credit Valley Hospital and actually led the development and building of the cancer centre at the hospital. The details of my tumour and treatment are in my bio - I do know that my cancer was aggressive at stage 3 and that the two nodes which were impacted with macro. I know two people who have gone through similar treatment and they are fine today; one is 5 years out, the other close to 8. Right now, I am very healthy with the exception of the cancer which tried to kill me so hoping that I will be okay as I work through this. I know that I will be monitored very closely. I too was told that the chemo is precautionary as my margins were clear as were my Bone and CT scans.I sometimes think - what if I did nothing? I suspect that the truth is - no-one truly knows!! My thoughts are that I could possible have microscopic cancer cells floating around just waiting to wake up. If I do, chemo should wipe these out and prevent any new ones from growing. But it can also increase the risk of other cancers or health issues. So - it's only 6 rounds - FEC-D also known as FEC-T. 3 rounds of FEC followed by 3 rounds of Taxtotere. Then the herceton and Tamoxifen. So - do I walk away and say forget it - whatever happens happens? I don't want to end up like a good friend of mine who had a rare form of skin cancer - ignored it - then by the time it started to grow and ooze it was too late! So, I'll give it a go I guess.
Funny - I have reflux - very minor - and while we were i n NYC, my chest began to hurt while we were walking. This is the 2nd of 3rd time that this has happened since feeling the lump in my armpit on Jan 27. So, I started taking my Prevacid a few days ago. This morning I can still feel the pressure a bit - funny - my hubby told me - don't even say that this is lung cancer!! He reminded me that I have experienced this for years especially when I am stressed! I find it off that I now feel somewhat relaxed - more so than when this started.
I've missed all of you and am glad to be back!!:-)
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F-nut, Your travels sounded like great fun! About a year ago, knowing that my summer was going to be marred by surgery and chemo (different cancer,) I had to bump up my summer and go on a cruise before all the badness went down, so I am a firm believer to squeeze in the fun whenever you can. It IS kind of disgusting to have to take these harsh chemo treatments "just in case," and really inhumane, but what is the likelihood that they come up with methods to figure out who actually needs it when so many paychecks depend on us buying into the chemo "just in case." Disgusting!
You will probably have to forego the weights a little longer. When you get the port in, that side is not going to want to be moving and lifting for some days, at least. As far as getting thru' everything...you are a step ahead already if your health is very good going in. Do try to stay active throughout treatment, but never to the point of wearing yourself out; and please know that there will be some days in the chemo cycle that are better than others.
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Football, welcome back! Forget the weights as e said, you do not want to rip open any internal stitches!!! I did that with some laparascopic ovarian surgery years ago and paid for it with scar tissue. You are grade 3. That is an active growing cancer. It`s a no brainer at this point to get chemo. I think any of us would.
As for stray cells, don`t know if you were around when I was saying that I tested for ITCs (Isolated Tumour Cells) in my breast tissue or blood which are random cells just bopping along looking for somewhere to land. They are in my system. I didn`t get chemo and every once in a while I wonder.........
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No, Barbe and I aren't saying two different things. We are both saying chemo works very well on Grade 3, fast growing cancer; and because of that (almost) any of us would say yes to getting chemo just in case some BC remains in there somewhere. I'm saying no one knows whether it is all out or not, and that is the shame. Currently chemo regimens are devised based on group statistics but one day, in the utopia I dream of, it will be based solely on whether the individual needs it or not.
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Ok you all - I ended up over in the "vain" thread just reading along and getting a smirk and laugh and then they started talking about Beaver Butts - you all had to infect another thread didn't you?? Just when I thought it was safe to venture back into the forum
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FBN, sounds like you had a wonderful time (despite the cold thing). I agree about the chemo, that until we know better, I preferred the added insurance. Was told I'd have about a 95% chance of that cancer not coming back, so far so good. Too bad we all don't have a trusty crystal ball! In answer to the IV question when neither arm can be used: the foot is used. That's what they had to do for one of my sx's (think it was mx/recon, can't remember, the Xanax and other meds did their job to keep me from remembering.
Please listen to PS about the lifting, so much internal work is done you don't want to mess that up. (I overdid while recovering by downsizing my parents' home, I believe that's why it took me longer to heal). Remember the mantra "just before you can, doesn't mean you should." Have fun with friends!
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FootBall - RE: Blood draws or IV's - whether for testing or anesthesia for surgery - once your port is in, they can use that for everything if it's a power port. Otherwise, they always start IV's in my ankle or foot. That means they always need to call the head nurse since most don't know how to do it.
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Ok, so here's a chuckle, I see a friend I haven't seen in 10 years this weekend (we moved) she doesn't know I had cancer, anyway, she tells how great I look and haven't changed a bit! If she only knew!!!!
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