TRIPLE POSITIVE GROUP
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SpecialK, he has always ordered the liver enzymes (ALT/ASP/AST). All three were always normal other than one time when one of them was just a few points over normal but I had just started bike riding again after years the day before the blood test and we had just gone through a big move and I had finished radiation a few weeks earlier.
Since finishing Herceptin and starting the aromatase inhibitor he's started testing LDH. This last time he ordered a breakdown of the LDH and it's LDH-5 that's elevated (there's LDH1, 2, 3, 4 and 5 ). I guess I should just ask him why he started ordering the LDH test. I did notice that my former oncologist had tested it a few times and it was always normal.
On the other hand, back in 2007 it was elevated to the same number it was this last time.
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More on changes in breast cancer screening and treatment. You've all likely heard the discussion and controversy .This a good overview.
"It is easy to promote mammography screening if the majority of women believe that it prevents or reduces the risk of getting breast cancer and saves many lives through early detection of aggressive tumors.4 We would be in favor of mammography screening if these beliefs were valid. Unfortunately, they are not, and we believe that women need to be told so. From an ethical perspective, a public health program that does not clearly produce more benefits than harms is hard to justify. Providing clear, unbiased information, promoting appropriate care, and preventing overdiagnosis and overtreatment would be a better choice."
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ok..we've all had cancer.. Let's hear what you all think about mammography screening? How many of you discovered your cancer through routine mammography screening?
Not me. Found it by self exam.
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hope all who had their treatments yesterday and recently are doing ok.....:)
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I had screening by mammography starting at age 30 because I always had lumps and was adopted so had no access to family history - then at 5 year intervals until 40, then annually, or often bi-annually, and often followed by FNA. In 2010 I had a mammogram which did not reveal my greater than 2cm mass, at all, which was followed by an ultrasound because I had many palpable masses at all times, which did clearly show it, so mammography was useless for me. However, I also had a pre-surgical MRI which failed to show a 6mm positive node and the ADH and ALH in the "prophy" breast, so imaging is not my friend.
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For all the good news.
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I had a perfectly clear mammo in 2012 (I do not have dense breasts), but the next mammo, 18 months later there it was, clear as a bell, big ugly white spot on a field of gray. I could have diagnosed it myself, it was that obvious. The estimated the size was 1.3 cm, but acutally 2 cm after excision. I was really upset about about being 6 months late on my mammo screening, but they said it may or may not have shown up 6 months earlier. They tell me was was there 18 months prior too, but not detected.
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Approx 7 years ago I had an ultrasound of my right breast because I suspected that my saline implant was leaking. At the same time they looked at my left. The leaking was confirmed - no biggie. - and I was told that there were tiny cysts in my left breast which were not a concern. I had my first mammo in 2012 as a result of my age and was told all was good
Last year in June I felt the lump in my left breast. Had a mammo which showed nothing and an ultrasound which reported that it was a fibroadenoma which I never believed. Despite my asking I was told that a biopsy was not required
In late September I had another mammo and ultrasound. Mammo showed nothing and ultrasound shared same results however also mentioned small cysts in auxilla. Still no biopsy would be ordered
I felt a large lump in my left armpit jan 27. The next steps
- mammo and ultrasound
- biopsy
- surgery. Modified radical mastectomy. I could have had a lumpectomy but I chose mastectomy and removal of right implant
- results that cells were cancerous
- met with MO to discuss pathology results. He sees her2 + as very survivable and treatable. As he is the chief of oncology at my hospital I have all faith in him. He has told me that there is a low risk of reoccurence and given my past health and cancer I should be fine. I'm going with this although I know that there are no guarantees for anything in life
- round 2 of chemo done. My treatment is 3 rounds of FEC then 3 rounds of taxotere with herceptin. Herceptin will continue for a year. Tamoxifen will start in fall
Whoopee!
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I had very dense breasts. They did see something 4 years prior when I was 45 but everyone said it was nothing. Never followed up. skipped next mammo. After that I kept getting all clear till I came in with a bloody discharge. Place still said it was suspicious but not typical of breast cancer. Brought disk to BS. Couldn't read the US but knew I had it just by looking at the mammo. I do believe if I had been going to a better place my tumor would have been discovered at least 2 years sooner. So in my case the mammo should have helped my situation and my treatment might have been less. I also feel that women with dense tissue should be able to get MRI.
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At 5 weeks PFC I am still too scatterbrained to specifically address all that has gone on with this thread.
Hello and welcome to those just joining.
Congrats to those with clear scans and recent cancerversaries!
I found my tumor. Mammo 10 months prior was "clear." Seen clearly on US, MRI and Pet - all done pre-surgery. I had another pet recently, but had presented with that lump on my side. Will not be getting scans unless symptomatic.
Today I have my 6 month breast check. BS wanted mammo, I asked for MRI instead. My port is in a squeeze space for mammo. I am afraid they will crush it. That and the fact that it is tilted, I physically move it back upright, I am afraid they will pull it out of place. Possibly irrational fears, but it hurts without being disturbed and I just don't feel like aggravating it. Getting MRI....
Thank you for the articles Ashla!
Treatment plan was...A/C dd x 4 and TH x 12 (had 9 Taxol) Herceptin to continue every 3 weeks for year(still receiving weekly), Tamoxifen for 5 years.
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YW Robin LK
Hope we get more feedback on mammo debate .
Lago I also have very dense breasts so I have both mammo and US on yearly and up till now every 6 mos on bad boob. I think I may face the prospect of 6 mo testing forever because I have developed 2 very small oily cysts along the scar line. Apparently this is common in surgeries.
I do hope US is better than mammo @ accuracy!
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Hi ladies!
I very seldom post anything but I keep up on everyone else's posts and comments but
I did have a couple of questions. I finished TCH 4 weeks ago and the only bad side effect
I've had was severe leg and muscle pain. Which is still continuing but the Onc doesn't
Seem to worried about it. Has anyone else had this problem and when might I start
getting some relief from the pain? Im still continuing the herceptin every 3 weeks so
didn't know if that could be contributing to the pain. Also I asked my Onc about any
follow up scans and he said he doesn't do them unless I'm having problems or symptoms.
My BS said she will do a mammo and MRI at 1 year which won't be til Oct. makes me
a little nervous when reading all of your posts. I do have a great BS so I'm trusting
her opinions but it does scare me when I read how some of you didn't have anything
show up on scans or in the nodes only later to find out it was there after all. Am I
worrying too much? They said they got it all and the nodes were clear. Just wondering!
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My BC was found on a routine mammogram (which I was about 4 months late in scheduling). My IDC turned out to be only 5mm. I saw the original mammo film and couldn't see a thing even when it was pointed out to me (it was calcifications). I think a lot depends on the skill of the radiologist who looks at the film. Lucky for me my radiologist was awesome. Obviously I'm a firm believer in mammograms, although I know they aren't effective for everyone. If I was having them only every 3 years or whatever, who knows how big the IDC would have been, and whether nodes would have been involved?
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Ramey I don't believe my problem was nothing showed up. I believe the radiologist reading the scans were blind. What we have is not perfect but if you believe in your BS and treatment center then you are doing the right things. Also at about 5 weeks PFC (post fucking chemo) my stiffness started to go away. I never thought it would. I mean I couldn't even sit cross legged on the floor let alone get up I was so stiff. It goes away as hard as it is to believe.
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Thanks lago I was beginning to believe This pain would never go away!
Also my IDC showed up on a mammo that I was 6 months late on getting
done. Never did feel a lump or anything. Obviously I was very shocked as I
am sure you all were to hear that news. But we don't have a choice on the
cards we are dealt but only what we do about it. I love reading all your stories
and accomplishments knowing that we can beat this!!!
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Ramey ... MRI is very accurate! Also don't let us forget the good ole clinical feel up exams our BS and gyn give us! Lots of people watching out!
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Hi everyone,
I'm triple positive. I have posted on other threads but not here, but I have read your threads and wish I had this while I was in treatment. You all are amazing!!
I have very dense breast tissue. At age 47, I discovered my lump myself- clean mammos previously. The Mammo after I found the 3 cm lump still showed NOTHING. The ultrasound showed all nodes clear but mass not cyst. So I had a biopsy which confirmed cancer. This was all at a local place- I think that if I had had my screening in Boston where I was treated it would have been found sooner.
My Boston MO ordered a Breast MRI that showed another suspicious area in the breast-- that convinced me to have UMX. My other breast was clear. After surgery the suspicious area was found to be DCIS. The pathology also showed I had micromets (Largest 1mm) in 3 sentinel nodes that did not show up on any screening as well as LVI which scares me so much.
I know that if I had had a breast MRI earlier the cancer would not have been so far along and my treatment would have been different and I would be less nervous.
My treatment was surgery, ALND which revealed no further nodes activity, 4 rounds AC, 12 weeks taxol and every three weeks Herceptin once I started taxol. Then 25 rounds of radiation and tamoxifen.
I still have my TE, so I can't have an MRI till it's out. I will do the exchange in the fall- didn't want surgery before summer- I barely swam last summer because of radiation.
I always tell my friends if you have dense breast tissue fight for an MRI.
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Mommato-
I did pretty well with ACTH protocol-- my secret anti nausea tool (after some research) was ginger capsules !! I took one every morning and evening starting the day of treatment till about Day 6. Barely had to use real nausea meds. Felt out of it mostly Day 4 (lowish3-5) but I loved that the second week I always felt great, almost back to normal. Taxol was easier though by the end it was tiring. I did acupuncture which helped a lot with energy. Just remember it's a marathon not a sprint and you'll get through it! It's a good time to learn to love binge-tv shows like Parenthood and Scandal! I have two kids in elementary school so I felt I had to be pretty upbeat and I managed to still take them to activities and had a weekend in NYC with the family- wore my wig and no one knew I was in treatment.
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mine was found on mammo. On time exam. 0.8cm. I'm very grateful for skill technician/ radiologist who found it.
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I found mine because it started to hurt & there was a little bump that got dark on out side of skin I flipped out. It turns out I had a little smaller then marble size lump and the darkness was the LVI. No node involved. went in to my Obgyn he sent me right away to the hospital for test. from there was a whirl wind as you all know.0 -
Annual screening mammo found mine. I am grateful that it was caught before it grew larger.
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I had my annual mammo 26 Oct 2013 - had been having them for 4 years. All clear. On January 26th I found the lump on the left myself - it was too high to have been caught in the mammo - it was at the very top of my breast tissue just a little below my collarbone. However, once it was biopsied and determined to be IDC my BS sent me for a breast MRI and that is when they discovered another growth in my right breast in a place that should have been seen on the mammo - no one had ever bothered to tell me that I had very dense breasts. My BS got my mammos delivered to her office for the two prior years and reviewed them and said that there is no way they could have seen it but she was sure that the one in the right breast must have been there for at least 3 years as it was not her2+ and not aggressive. So I am thankful that I got a cold and coughed so hard that my hand went to that part of my left chest and my fingers ended up on the exact spot of my left cancer - because it was only 1.3 cm and I would never have felt that area in a self examination - I did not think that was breast tissue. And that is why I went BMX and never even considered lumpectomies. And Ashla - thanks for all your informational posts on this subject - I have been sharing so much of this information with my FB friends - my story and some of these articles because if I can make one more person more vigilant then there is another purpose for me. I am just so grateful to have found you all - I would be so lost with what I could gleam from google and so scared.
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I found mine in the shower. never had mammo done before cus no family history n 38 yrs old. so my pcp sent me to do mammo and ultrasound. Biopsy a week later, i got a call from my pcp that it was cancer.
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linda505 and all the rest of you newbies in the midst of treatment.... You are doing GREAT!
I didn't find this forum till I was well into treatment but don't think I would have been so aware and informed as you girls are! I just remember being perpetually dazed and confused. And getting rounder ,balder and shinier every day. Like Buddha.
You go girls!
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Ramey, I had thigh pain for 4-6 weeks PFC. I believe it was due to low Potassium. Once my blood numbers stared to stabilize it began to get better.
I had dense breasts and had been getting mammos every 6 months for about 3 years. Nothing ever showed up. But at my last mammo, my GYN said there was something that looked suspicious. He sent me to a surgeon and I had a biopsy done.The "suspicious" spot turned out to be nothing, but in the margins of the tissue around that is where they found the DCIS. So the BC didn't show up on the mammo and it was only my GYN that thought something wasn't right. Those of us with dense breasts are the ones that they seem to have a harder time detecting. But then again, that was 14 years ago, and I know they have much better imaging now.
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I found a lump in my right breast a few months before I did anything about it. I tried to pretend it wasn't there or was nothing. Then I went for my regular annual exam with my GYN and when she felt it...Well you know what happened then.
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I like Lee A's approach, so I'll try it:
Found a lump
Got a screening mammo on the right, diagnostic on the left (lump breast), all good, nothing unusual
Breast center says all women complaining of a lump get a sonogram so off I went
Sonogram not good, biopsy 4 days later
Diagnosis and meeting with breast surgeon, sonogram of my lymph nodes showed negative results
MRI of both breasts and axillary nodes
Lumpectomy and sentinal lymph node biopsy
Chemo with TCH, planned for 6 every 3 weeks, sick as a dog, hospitalized for 5 days
Chemo now changed to Taxol and herceptin every week for 12 weeks, no neulasta or neupogen, one red cell transfusion
Dexa for baseline bone density
Radiation for 35 days
Arimidex for 5 years (man was I crippled for about 6 months, now no problems at all)
One year of follow-up herceptin every 3 weeks
No scans, lots of boob feels by MO, BS, RO
Mammos--diagnostic every 3 months on left breast, scanning every 6 months on both breasts
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Lee A, the LDH test (lactate dehydrogenase) is usually run as one test of total levels (we used to call it the death marker in my old job because it gets really high in very sick people). The test you've been getting is a separation of the different isozymes and that's because different ones are made by different tissues. So they look to see which tissue might be expressing the enzyme. It detects which tissue is not getting sufficient oxygenation or is being injured by toxins. It is pretty non-specific for the tissues though. My MO ran just total LDH on me at my 3 month appointment after being on Arimidex for almost a year. Thanks Special for letting me know that the drug tends to raise it. Mine was normal, so I guess they are just looking for people who don't tolerate the AIs well.
Ramey, had they run a CK or CPK test on you? Are you taking a drug for cholesterol lowering?
And Ashla, I am not sure what to think about mammos. Interestingly, I got called back from the screening mammo every year for about 8 years to do a diagnostic on my left breast. They'd always tell me all was fine, but looking back....
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I'm a bit behind here -
Mine was found on mammo. And my obgyn demanded to see the previous images because as he whispered to me, "There's no way you go to stage 3 seemingly overnight"...but he was shocked. The earlier mammos were indeed completely clear.
As an interesting footnote - I started chemo with news trucks outside the glass of my huge cancer hospital covering the switch to only recommending mammograms at age 50+. I remember wanting to bang on the glass and scream to the reporter that I would have been dead without mammograms starting at age 40. (And like so many of us...no family history, thin and athletic all my life. No rhyme or reason.)
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Ramey - I had bone pain in my thighs for many weeks after chemo. It was a dull but painful ache that was a bit scary sometimes. I worried I wouldn't be able to keep up with my kids running around. I remember my son won this big science award, and I had to go to a college university for the next level of competition and I was literally in a quiet cold sweat of a panic that I wouldn't be able to get around the campus.So scared I would let him down. I got through it. I remember him telling me on the last day that we could go home, and skip the final ceremony. We didn't think he had won. I said "No, we have made it this far. Let's hold our head high and clap for the winner." HE WON! This was years ago, but I still think about how proud I was through tears. He just graduated high school this weekend and because of that competition, and good grades he got a full scholarship to college to study biomedical engineering. Soon this bone pain will be well in your rearview mirror : )
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For all the good news.
