MIDDLE-AGED WOMEN 40-60ish
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Hello again everyone!
Yes, my lone ovary is celebrating!! Woot! I am so glad it gets to stay! I did NOT want to deal with that on top of DBMX and reconstruction recovery!
I am a Dental Hygienist, so I can understand the problems you guys are having with your teeth. However, it is my understanding that the effects of radiation treatment to the chest, does not increase problems in the mouth/jaw area. It CAN affect swallowing, though. Totally different story when it comes to chemo.
I'm sorry about the dental problems, but implants, if placed by a experienced specialist (believe me, there are dentists who are not experienced in placement of implants who are trying it anyway!) should last and be a wonderful subsititute for a tooth.
Hugs!
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Per my dentist & periodontist - radiation does cause dry mouth (as does chemo) and they believe that's one of the major causes of dental problems even if the rads aren't aimed at the jaw. I had my first implant after a tooth broke off at the gum line when I took a bite of butter lettuce (Really!!). Hope the other 6 that show up as compromised on the X-rays stay in place.
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MinusTwo-- Hmm. Learn something every day I guess. Radiation induced xerostomia (dry mouth) is thought to be induced by head and neck radiation mostly. At least that was what I learned in my training. I had not heard that radiation damage can be caused in areas that are not in the radiation field.
Well... go with what your doctors say, of course! A new topic for me to research as well and see what updates and studies show.
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When I had gotten some extensive dental work about ten years ago, at one of los angel's best dental school, I remember when they looked in my mouth, they waved some other students and teachers over to see. They wanted others to see it, and when they were done, and I could speak again, I asked what they were looking at. Apparently, I have a huge number of extra salivary glands! How do they even know that? What do they look like?
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Tomboy, I'm guessing they were looking under your tongue where there is a nice cluster of glands and if you look in the mirror and lift your tongue a little you will see them.. Yours are probably really big and really fill up the space there under the tongue.
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MizMimi - I'm always open to new thoughts so I'll look forward to any updates you find. How nice to have a dental hygienst on board. My problem could also be that for the best part of a year I couldn't eat anything or drink much either - so the mouth just sat unused. No nausea, but horrible Big D and everything tasted like c*ap, I got my liquids from extra liters into my port at the infusion center.
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Minustwo, I hope they get you all straightened out soon, no more dental pain, work, or trauma, once you are done this time!
MizMimi, thanks! That would explain why one time when I was talking, I felt and saw some fine drops shoot about a foot out from me, and the only thing I had noticed is it had been a word, I don't remember which word, but my tongue had been curled up and back toward the back of my throat while might was open! My sister saw it! So then I practiced so I could do it at will, I guess for the day when somebody really obnoxious might get in my face. I had forgotten all about it. But I think now I am going to see if it still does, after chemo and treatment. I will come back and let everyone know. (Those people who might be hanging on the edge of their seats, wondering....) LOL
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During the hot, hot, summer a couple years ago, during my chemo time, I went out to an evening soccer game and found I had NO SALIVA whatsoever! Luckily, I had brought some water with me. It does make perfect sense that when we get (whatever kinds of) treatments that take the saliva away, it changes the whole Ph of the mouth and lets the bacteria get the upper hand in there. I had not thought of that, but looking back, my decay could have began during that time too. No one noticed because it was underneath a crown.
Oh, and I used Biotene, Act Dry Mouth Rinse, and saltwater quite a bit for chemo-mouth hygiene but all the benefits lasted only a short time. Like if I used Biotene at bedtime, by 3 a.m. (you know, when I was on the couch watching Law & Order reruns) my mouth was a dry gulch again.
Tomboy, I hear you, I had the same experience at a dental school where they all gathered 'round to gawk---I was in college at the time, yet getting two root canals done. I was born with bad teeth, soft enamel. I always say I would like to be reincarnated as a shark...they get rows and rows of new teeth. Now that is a fabulous deal!!!
Final comment...I was shocked to find out that A LOT of my friends (who have, at least, average teeth) all have crowns and some a bridge or two. I think we have hit on yet another plague of Middle Age. Even if you had a trouble-free youth, the dental woes start to crop up at this time of life. Then, multiply that out with our treatments and we are in trouble.
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We are falling apart...crowns, bridges, and hip replacement, I wonder what is next for me...Ugh!
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Interesting to read about falling apart. I was just telling my siblings today that since I am the youngest of 7 , they must have scraped the barrel and gave me all the leftovers as I seem to have inherited everything. Today I found out I have a start of a cataract. My mom had them at about my age and Tamoxifen also can cause them so who knows, but grrr. I also had my thyroid removed from a goiter( mom also had that), a partial hysterectomy from fibroids. then recently my ovaries removed. I also found out that the exostosis aka Tori on my gums are growing and I will soon have to think about having that ground down off my gums. UMMM OUCH!!! I hurt my elbow at work 10 yrs ago and the nerve in the elbow has been aching and aching a lot lately again so grrrrrrrr.. I am falling apart. I told my sister I am going to Sh******t... Frustrating!!! -
Greetings long lost buddies,
I haven't posted in awhile. For some reason, the notification setting of when there's a post on this board hasn't been showing up. I'm guessing it's operator error.
Two items:
1. My best BC buddy says I should get blood test markers (CA 127 or whatever) as my oncologist told me I need do nothing other than once a year have a mammo. She said I was very low risk. I read about it on BCO search function- thank you, BCO. What I want to know is cost and how easy or difficult is it for your GP to recommend it if you no longer are seeing an onc?
2. Ms.Mimi, I'm so surprised that you are having a BMX for DCIS especially when it's hormone positive (as opposed to triple negative etc.) and you are negative for BRCA. For what it's worth, I am so glad I preserved my healthy breast because at least I still have sexual stimulation for the healthy breast. At your age, are you willing to give up all breast stimulation? It may make the best sense for you because of a family history with some other genetic marker, but sometimes we go into breast cancer treatment overzealously because we so need peace of mind in the beginning. Later, if low recurrence prognosis, we can question our trade-offs. I am not telling you what to do. I completely believe every woman's BC journey is her own and she needs to do what is correct for her. FYI, you may find some of my blogs helpful. I too, had an augmentation years before BC and years after breast feeding to fix saggy and flacid. I woke up with a TE. I didn't have to wait. Also, I had a lift 3 mos. later. Warning. The lift hurts like a son-of-gun. I think it took a village to lift TweedleDee- I had an Alloderm sling also. TweedleNumb was a piece of cake. If I had it to do all over again... I would have delayed the lift. So soon after my MX, it really took a toll on me. Additionally, I was an extremely fit woman for age. Not overweight and getting the highest monetary bonuses at work for staying in shape. My blogs can found at www.rockthefoob.com if you are interested. All we can offer you here is insight into our personal journeys and 20/20 hindsight. We support you regardless of your informed decisions because none of us can tell you what's correct for you. Best of luck. We're here for you.
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Deborah - I push to have the CA27-29 test (for BC) run sporadically now that I'm finished with treatment. Sorry, i don't know the cost, but you should be aware it's only an indicator. My MO said I should never panic if those numbers go up since it's not known for pin-point accuracy. He would just order other tests if my numbers went up.
On the other issue - one breast or two for DCIS - thank heavens I had them both removed. I was negative for BRCA. However they found DCIS and lesions in the "good" breast that the scans hadn't showed. When I had recurrence in less than 2 years, the ALND surgery was minor compared to another MX. But deborah does have a point about losing sensation.
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Hi all!
I am new to the board, native New Englander transplanted to Maryland. I am 4 weeks post lx surgery waiting on my MO and RO appointments next week. All of this has thrown me for a loop! Looking forward to connecting!
Cheers!
~Midgie
And here's my cat ( of three) and a garden picture...
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Deb2012, Since it is a simple blood test (and many of the early stage BCO women DO get tumor markers done as part of their regular follow-up and mentioned they had ins. coverage on it,) I don't see how it could hurt to have it done. While it is true that sometimes you could have an elevation that was meaningless as far as the return of cancer, usually the Docs do not act based on just one test with high markers...you would be followed to see if you showed an upward spiral of the numbers and that could be an indicator of the return of BC, at which point the other tests and scans would be warranted.
My doc does not do TMs for early stage BC, and I never pushed to have it done but if I were Grade 3 like you were I might have asked for it. My feeling is that Grade 3 bears watching more closely and more frequently. There are two tests: CA 27-29 and CA 15.
Welcome, Midgiemoon!
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I didn't know about the CA 15-3. Thanks for the heads up.
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MinusTwo, as a fellow 3B'er I wanted to add that my doc runs 3 separate TMs before each appointment. I get the CA 15-3, CA 125 and one other one. He has explained that the TMs are somewhat unreliable and can give both false positives and false negatives. He still thinks that with a 3B DX, the additional info is worth the potential downside.
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Thanks Momine. It should be a very interesting appointment with my MO Thursday.
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Momine, It does seem that the doctors use the TM tests more often for the Stage III's (and Stage IV's, of course, for treatment monitoring.) I think it is somewhat of a grey area to run the TM tests on Stage 1 & II women but, as I mentioned, if those early-stagers are Grade 3, why not check the markers along with the standard blood work?
What I hear a lot is that whether a woman gets an "early discovery" of recurrence, like it first showing up on TM test; or whether recurrence is detected later by symptoms, is that either one usually gets the same treatment procedures anyway. With this thinking, some docs don't see the point of doing the TMs. I do not understand that, and to me it defies common sense. I would think that to catch a recurrence as early as possible would be paramount in treating it, even if it were Stage IV mets, much the same as early detection usually leads to a more favorable outcome. My Stage III-turned Stage IV BFF got poor follow-up, no adjuvant chemo and no TMs monitored. Pain sent her back to the doc, and mets were discovered. While it is true that monitoring could not have stopped the mets, perhaps her recurrence could have been detected before it got painful, when the lesions were smaller.
It seems like common sense that small recurrence lesions would be easier to beat down into NED stage---but this might be faulty reasoning. We have all heard some case stories of large lesions/tumors shrinking down with chemotherapy, and of smaller lesions/tumors not responding. That brings us to the question of "does size matter" in the case of recurrence? Does early detection matter? If it does, then TMs should be a part of the routine follow-up. How big do the lesions have to be before they will actually show up in the blood anyway? How small and early can they get detected?
(Side note: While I don't get TMs done for my BC folow-up, I do get a tumor marker test as part of my CRC follow-up. It is called CEA, and that can also rise in the presence of BC, but it is not one of the main ones we have already mentioned.)
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Hi Middies,
Thank you for the marker info. I will contact my GP this week or my former onc's office to see what's involved with scheduling the CA blood work.
MinusTwo: How did what happened to you happen? I must have loss of cognitive function from previous AIs. Checking for comprehension here:
1. Prior to Feb. 2011, you have some type of BC (Her2+?) at the DCIS stage.
2. Feb 2011 You have a BMX. No Sentinel node involvement in either breast and a surprise finding of a second BC (of some type). TE's are installed.
3. Sept. 2011 You have implants installed.
4. Mar. 2013 the nightmare begins all over again. Even with a prophylactic BMX and zero node involvement, the SAME BC came back? How did that happen? It was a recurrence of the same BC? Or your body just got super accomplished in growing cancer and decided to grow some new crap to round out the menu so-to-speak?
My onc did not only a snb at the time of my MX, but removed 3 other lymphs for good measure- all clean. What is interesting to me is, during a MX/BMX they always check the tissue for cancer and run prelim lab results before they sew us up again. Didn't they spot your second "surprise" cancer in the disguised "healthy" breast during surgery? If so, I wonder why they didn't take out a few more nodes for testing?
I'd plotz if after a prophylactic BMX and zero node involvement and I assume regular mammos, I grew more BC and it was the SAME BC from the original DCIS? I thought that's point of DCIS. It hadn't spread yet. It's like some kind of immaculate recurrence. I learn more every time I come to these boards!
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Deborah - you're sort of right. Original diagnosis was DCIS. They don't check HER2 with DCIS. So I had BMX in 2011 and yes, they did take sentinal nodes - 2-4 on each side were all clean. There was nothing else there at the time. No other treatment needed. I had totally clear scans before & after reconstruction - even as late as 3 months before I discovered the bump under my collarbone. Just about 2 years to the month from original surgery, the new ULS biopsy showed IDC. So not really the same type of BC. And chest wall instead of breast (which were gone). My BS & MO were both speechless. I believe they've called it a recurrence instead of mets because it's in the same general area, but it works the same as mets - a micro "dot" is suspected of escaping during surgery & mutating, OR a new cancer took root & it grew very rapidly. With 2nd diagnosis they did test for HER2, which is why I got immediately routed to neo-adjuvant chemo. I did not have a pCR from the first chemo so after ALND surgery I had a second kind of chemo even though surgery got it all again. Then rads. All treatment the 2nd time was based on HER2+ and negative ER/PR, the quickness of the recurrence, the size of the tumors, the fact that TCHP did not knock it out, etc.
I honestly believe my BS took everything she could find & test in the original surgery, and extra margins at that, which is why I couldn't have nipple sparing. She was almost in tears when I told her about the recurrence. MO was hoping it was a leaky implant, but since I had cohesive gels I knew that wasn't the case. Just the luck of the draw I guess. Anyway, you can see why I'm a little gun shy when someone starts saying 'no tests needed'.
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I swear, if stress causes BC then I will surely get it again!
So, last July, I went for my five year BC follow-up. A few might remember that I asked for, and got, an MRI for the definitive look-see at my five year point. Well, by Sept. the hospital mega-complex (of which my Breast Center is a part) was sending me a bill for a $1400 portion of my bill that ins. would not pay. In particular, it was for a computer-aided second reading of the MRI. Since I had a predetermination of benefits done beforehand, where I was told that I would be covered at 80%, there was no way that they were going to fleece me on this!!!
Flash forward a few months, a dozen phone calls later and the charge was in review. Then, I get another billing for the same. Rinse, repeat, with the dozen phone calls until, finally, in March I was verbally told that the amt. usually gets written off due to the contracted rate they have going with my ins. co. I was supposed to get some kind of form letter in the mail with the outcome of the review in writing, but I never did get that. However, no more bills, so la-ti-da, skip away. Then, last Friday (and it always is a Friday, isn't it?) I get a call and letter from a collection agency, now for $279. The funny thing is, the hospital had never, I mean never, sent me a billing of those charges.
Flash forward thru' a crappy weekend of anxiety and last night's four hours of sleep, to 8:01 a.m. this morning. Oh! Apparently, that new amt. is the 20% I would owe from the original charge for the second diagnostic reading, BUT (my big But is really getting around today) I was told that there had been an error in that no billing had ever gone out. I got some kind of rant on (as I like to do when I hear that opening recording that "all calls are being recorded") of which the highlights were me asking if I was supposed to become a mind reader now about my billing; how horrified I was to be given to a collection agency; and what a shoddy way for a "U.S. News Top Hospital" to function---you know, the whole earful.
Now, I realize it could have been anything, but it was not. It was BC still impacting my life in a negative way. I try so hard to mentally move on and I just hate to be dragged back down by it, even in this way. BTW, my case is being withdrawn from the collection agency and I will get a new billing from the hospital, which I will promptly pay as I have done all the rest. Now, if I could only get a paycheck for the micro-managing I get forced into...sheeesh!!!
[And thank the goddess above that I am not exceedingly elderly or frail that I DO have the stamina of a pit bull when it comes to resolving these types of issues. In my mind, I have to fight these battles because I know there are so many who are too old, sickly and weak to stand up for themselves in matters that drag out for months at a time. It really makes me mad. While I hate the stress of it, I have to do it on principle, don't I?]
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Shaking my head.
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Elimar, CEA is the third TM I get. How the heck did your friend not get chemo with a stage 3 dx?
As for the whole early detection of mets issue, it is controversial. My main doc says that if you find the mets 4 months earlier, say, than symptoms appear, that just means 4 extra months of doing chemo. That is the standard view, but it makes little sense to me as well
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I think she said no adjuvant chemo- no chemo before surgery? She had some after, right el? I refused chemo before surgery, now I am glad I did, really they can't properly stage you if you do neo chemo.
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MinusTwo recomended that I post this question here. I had my first batch of tumor markers run, and my CAE was 6.5. Normal range is 0-4.0, but I have seen that it is higher in smokers. I left a message for my MO, only to be called back by his office to be told, they had an emergency and were just checking the nurse line, and he is gone for the weekend, please call back on Monday... BTW I'm on Herceptin, so my last infusion is in 3 weeks, and he is moving and that is his last day, so that might be why he ran the markers. Not really sure as they have never been done before. What numbers have you guys had and what actions were taken if elevated and what outcomes? BTW - blood was taken through my port, so not an issue with maybe missing some little cells, as you might when they use the pediatric needle. hummm.... wonder if there is a study on the numbers on a needle draw and on a port draw?
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Welcome, knmtwins! I am not the most knowledgeable on tumor markers, but please do not fret all weekend about this. I think you will find that on Monday, no one at your doc's office will be in a panic over that slight elevation outside of normal range. I think the important thing about having a blood draw for markers is to watch the trend. If you have a series of draws over several months and the number rises consistently, I think that would cause concern, and at that point several scans enter the picture. When you get your last Herceptin, stop by...we like a good Happy Dance every now and again!
Momine and tomboy, Let's see, I think the summary of my BFF goes like this. She had neo-adjuvant chemo to shrink a larger-sized tumor. Scan showed good shrinkage, but upon surgery it was seen not to have shrank as much as it appeared on the scan. She got LX + 17 nodes out, and 5-6 were positive, so she did get radiation after surgery, but they did not have her do more chemo. Maybe because the neo-adjuvant was not as super effective as they thought AND she is ER+/PR+ so maybe that ruled out more chemo; they went from rads to an AI. Trouble was the AI did not have the desired effect either since some mos. later she turned Stage IV.
[This is the part where she didn't get followed very vigilantly--no TMs--but even monitoring the TMs wouldn't have closed the proverbial barn door and her BC horses were already racing around her body. However, it was back PAIN that led to the discovery of the mets. Maybe with TM monitoring she could have been spared the back pain and also could have begun treatment earlier when her bone lesions were of smaller size.]
Anyway, after mets, she went on Tamox., got phelebitis and a hidden DVT was also discovered, which ended Tamox. After some Warfarin for the clot, it was on to Faslodex. Her TMs just kept climbing. She went from double digits to 400+ in 4-6 mos., so now just made a switch to Xeloda (that's the pre-drug that converts to fluorouracil/5-FU in the body) and we all have our fingers crossed that the TMs take the hint and start to drop. She really did not want to go to Xeloda since it brings on the Big "D" and she is all set to embark on a Coast-to-Coast road trip to the Grand Canyon this summer, but she can't let cancer run wild either. Ah, the things we have to do for cancer. What's not to hate?
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Eli, That is a sad and frustrating story. I hope the Xeloda does something. Thing is, I had neo-adjuvant chemo: 4X FEC and 4X taxotere. When we started the chemo, the docs told me that I might have surgery after 4 chemos or after 6. The issue was, basically, that if the tumor did not respond to the FEC, they would delay surgery to see if the taxotere might do something. Since the FEC worked, we did surgery and then the taxotere to "mop up." In other words, just because one chemo doesn't work doesn't mean another one won't.
In your friend's case, however, the mets appeared too fast to be the result of treatment failure. It sounds to me like she was stage 4 form the get-go, but that the doctors either didn't look for the bone mets or else the bone mets were too small at that point to be spotted. I have noticed in my BCO years that quite a lot of women do not get a full staging work-up before starting treatment, even when it is fully warranted, as in the case of a stage 3 DX.
Is her cancer lobular by any chance?
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Knmtwins:a CEA of 6 ison the borderline of normal to high,
(Normal ResultsThe normal range is 0 to 2.5 micrograms per liter (mcg/L). In smokers, the normal range is 0 to 5 mcg/L.
From <http://www.nlm.nih.gov/medlineplus/ency/article/003574.htm> )
If the CEA were notably high, defined as over 20, AND symptoms are present, then the presence of cancer can be assumed.
(Grossly elevated carcinoembryonic antigen (CEA) concentrations (>20 ng/mL) in a patient with compatible symptoms are strongly suggestive of the presence of cancer and also suggest metastasis.From http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8521> )
Some details about CEA testing:
Cautions
The concentration of carcinoembryonic antigen (CEA) in serum should not be used to screen asymptomatic individuals for neoplastic disease, and the diagnostic efficacy of CEA measurements in high-risk groups has not been established.
Single values of CEA are less informative than changes assessed over time.
CEA values are method-dependent; therefore, the same method should be used to serially monitor patients.
Do not interpret serum CEA levels as absolute evidence of the presence or the absence of malignant disease. Use serum CEA in conjunction with information from the clinical evaluation of the patient and other diagnostic procedures.
Some patients who have been exposed to animal antigens, either in the environment or as part of treatment or imaging procedures, may have circulating antianimal antibodies present. These antibodies may interfere with the assay reagents to produce unreliable results.
From <http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8521>
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Midgiemoon:
I can identify with your post. My diagnosis started last August. I started with a double lumpectomy and ended with a double mastectomy, even though my cancer was early stage. I am blessed with a medical team that I trust absolutely, which really helps. I did have to fire my general physician who seemed to take everything as a death sentence. At this point I think we've done what we can do to prevent recurrence, I'm adjusting to body image changes, and doing whatever I can to maintain a healthy and balanced lifestyle. Please reach out if I can help. -
Hey there middies,
Sounds like multiple episodes of binge watching "As The World Spins". Thank you for the fantastic information. I was a good girl and got my CA 27-29 & CA15-3 blood draws this past week. At least now I'll have context for numerical values.
On another topic... I did a typical dunderhead Deborah move. Decided to do some home improvement on my own while DH was out of town. Oh was I ever proud. I used a miter box for the first time to angle cut a baseboard. Too bad I didn't Youtube it first. Uh oh. His pretty yellow miterbox is a tad cut up. I wonder how long it'll take him to notice that. But, I did get the job done. Unfortunately, I overestimated my reach of my long monkey arms while standing on the kitchen counter reaching above my head to take down filthy curtains to be washed. I fell. I hit the granite counter on the way down and was literally stunned when I hit the floor. That was a slow motion video on my brain screen while falling. I didn't hit my head. Too bad. It might have knocked some sense into me. I have numerous poster child worthy black and blue/purple marks. They're okay, but I hurt my upper back. I don't have back problems. I'm hoping its muscular. It sends a shooting pain if I move in a certain way and I literally gasp and freeze. Guess it's time to make a doc appt. since it's not improving. What a DOLT!!!! I was proud of myself- liberated and all. Oh boy, hubby gone and he left his tools. Crow bars, miter boxes, saws, Oh my. What fun! I require constant supervision.
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