Can we have a forum for "older" people with bc?
Comments
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Nancy....just straight up....I went to work at 17 to get enough money for a dentist. I had lots of dental irregularities but the worst was with my top teeth. I had just enough over-sized ones that several turned and at least one never even made it down. Ones that turned were not always in the same direction.....my mouth was a mess.
I should have been nick-named the Cavity Kid. Anyhow, after what seemed a lifetime of cavities and overall sensitivities to food to sweet, too hot, too cold......I got tired of it, went to work, saved money and went to a dentist who removed all of my top teeth. So, since the age of 17 I have had an upper denture. Pam in correct....an upper denture covers all of the roof of your mouth. A lower denture only the gums....so the upper is almost always a better fit. In fact, up until my stroke ( did something to the shape of my mouth somehow I guess ) I was able to eat apples, corn on the cob. You might not have known except that regular gum would go to pieces and now stay in the un-sticky little wad it did for other people.
I would do it all again though I have had to use dental paste now since my stroke. I don't mind it, but have to cut my corn from the cob etc. I still have bottom teeth but they are sparse....basically only in front. Hope they last for a good long while yet.....maybe till some better method comes along. At my age lower dental work would be difficult with the normal amt. of bone loss most of us go through around menopause time etc.
Allison...hope things are back to normal now. Glad you seem to be fine after the fainting spell but think you should have rested. Sometimes stress catches up a bit even though you were doing **fine** before the incident. Glad you had others to take over for the day. After all, you'll still have plenty of work putting everything away......you didn't get off scot free. Just take it easy...Rome did take more than a day.
See you all later.
Hugs, Jackie
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I apologize ((( alison))) for not saying how sorry I am about your recent incident.
Thanks for the teeth info. I am going to keep asking around to find a good dentist who understands about chemo and age and grinding and all.
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HI Today Ladies,
Hey Jo, From the Arimidex "Knowledge Is Power" pamphlet they gave me. "Aromatase inhibitors in general have been shown to negatively impact bone health. During treatment in the ATAC study, more women experienced fractures while taking Arimidex than those taking tamoxifen. During the 3-year off-treatment follow-up period, this difference was no longer observed." I would say that Arimidex probably affects teeth also. I am on Zometa to counter act that and to replace bone loss from the mets. "I" would ask my doctor if something like Boniva or some Osteoporosis medicine could help counter act the problem. BUT I am not a doc so I don't know, it's just the way my thinking would go. It's again, up to the individual.
LOL, yes, Jo, I use Arimidex and Zometa as an excuse for a lot of stuff. Hehe, Robert has caught on to me though and says, "Oh, bologna, do it yourself." when I hand him a medication excuse for being lazy. LOL I have also gained 5 pounds in the last 4 weeks. I am thinking it is a cross between the Zometa and Arimidex. I didn't start gaining until I was on the Zometa also. The thing is the more weight I gain the more my bones hurt. Gaining weight is not an option but "boy" do I want to eat everything I see, especially if it has sugar in it. LOL
Still all in all, my breast lesion is just about gone and my breast looks and feels like a breast again and I feel normally healthy for the most part so -- to me at Stage IV it's an amazing drug.
Allison hope things are going well, are you into the decorating stage yet? Mine is just about over, things are where I want them to be and now I am bored. So I study, blahhhh, I'd rather decorate. LOL.
Have a good one ladies I am off to crack my "one" book. Sigh,
Hugs,Pam
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Thanks for all the well wishes. The faint was really nothing, at least to me. I felt fine immediately afterward and have felt fine since. I really do think it must have been a sudden drop in bp due to the diuretic. Pam, the decorating is about to start. Please don't anyone stop to see me in the next few days. The boxes are blocking the front door! It's just wonderful to have it all here, and not part here and part there. I feel like a bird out of a cage! It will probably be months before the decorating is all done. I've decided to have a luncheon in 2 weeks for all that have been so supportive of me this past year. The catch is that they'll have to decide where to hang all the pics! A real working lunch! We went to a cocktail supper tonight for a friend's recently married daughter. I looked for the iron for over an hour. Then, after 20 mins. looking for my makeup, I went to CVS and bought new! Pitiful! Hope each and everyone of you is having a wonderful weekend. Much love and many hugs!
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Good Morning everyone.......glad everything is well and that you are in your new digs Allison with all the things you wanted. I thought you had such a good idea.....a luncheon where everyone has to take a few boxes and deal with the contents. Got me thinking.....what would I change ( somewhere in the next millennium I'm sure ) if my friends put things away in a new house or apt. for me.....and hung pictures and put out a few end table trinkets and small photo frames. I go in spurts and work fairly hard here at home....it must be the lazy person that lives inside of me that is so taken with that idea.
Jo...so interesting about the Arimidex and stopping it. Did you have problems getting acclimated to it when you first started it. Maybe just like HRT anything that has to do with how hormones work in the system need to have a **weaning** off period.
I feel like I've noticed the Arimidex more in this wet weather than any other time. Even then so far it's not enough to cause any problem...more of a nuisance factor most of the time.
Hope you all have a nice Sunday and Happy Day to all your fellars.
Hugs, Jackie
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I think I might just be having a minor panic attack, but you guys are the only ones I'll believe if you tell me to "chill out." My biopsy was positive about 2 weeks ago. Lumpectomy is scheduled for a week from tomorrow. This week I'm busy with pre-op tests including that CT scan to see if it's spread to my liver and lungs and a bone scan to check the bones. I'm sure I've gone over all this already in this thread - let's blame my panicked state if I'm repeating myself.
Question is this: is it normal that I don't yet know my stage, grade, nodes and all those initials - ER+ ER- HER2, etc I feel like I'm going into surgery so ignorant and you guys seem soooo knowledgeable. Or do we find all this stuff out only after the surgery?
Adding to my feelings of ignorance - when we met with the surgeon he was very optimistic - "it's small (1.5 cm), we caught it quick, likely you won't need chemo, etc." And I understood that all these tests were just routine pre-op. And now that I've been hanging out here (and have learned a bizillion times more than I knew about bc before, but still not enough), I'm feeling like he's ordered these tests to look for more cancer without telling me that's what these tests are for - or that the possibility that the bc may have spread already even existed.
Deep breath ---- Am I crazy? Just in a natural panic a week before surgery? Ignorant (should I know my situation already or does all that stage, grade, nodes, etc. stuff really only come after the surgery)? You guys are the only ones I'll trust here.....(I apologize for the rant - you're all free to ignore the babblings of a bc loon - but I know you won't) Love you, ladies...thank God I've found you guys.
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Momushka - you are not crazy! you are right where I was even after surgery. I had no idea about all the initials and stages and HER and all that stuff.
Since then, I have learned that you get that information after surgery because it is found out through pathology reports - someone studies the bits they have taken from you and establishes all that stuff. The CAT scan and all those tests seem to be routine - and I found it quite comforting to be told that all else is well. It was a while before my HER status was decided because the first pathology test was ambiguous. You aren't supposed to know all that stuff now.
The oncologist was the one who provided the written report so that I could go back and look at it. The surgeon who I saw earlier just told me some of it - maybe all of it, but I wasn't processing information all that well. Well done to you for sorting out your questions beforehand!0 -
Thanks so much lassie11 - since it's coming from you, I'll accept that I'm not crazy. But....I was just reading in another thread about some nuclear dye needles being put into nipples. WHAT?!?!?
I'll also be happy to hear that the cancer has not spread - the cause of my panic, is that I didn't even realize that was a possibility. And then I hang out here and see others with a 1.5 cm tumor - or even smaller - but they're Stage IV - and I repeat - WHAT?!?!?
I guess I just have to:
1. Accept that I didn't grasp everything the day I heard the biopsy results (understandable)
2. Learn to W-A-I-T and be patient with myself and the process. This one is going to be harder.
The thread with the abbreviations is extremely helpful for us newbies. Would it be possible to write the sequence of events in this journey? Or is it too individualized for each of us? Would be so helpful to know what to expect next. Maybe that will be my project while I'm recuperating from surgery. EEEEEEE!!!!!!
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Momushka..I felt like I had to earn a PHD in Breast Cancer in two weeks after I was diagnosed..it made me kinda crazy..I thought I could learn it all in a heartbeat..but no, it takes time and so your journey begins just one step at a time...don't get ahead of yourself please...and take a deep breath..the cancer probably took years to get there so a couple of days isn't a major event...
It sounds like your doctor is doing the usual protcol after diagnosis..they have to rule out stuff before they can proceed..
Remeber, one step at a time...
Sending hugs ,SoCal..
PS I was diagnosed almost nine years ago...
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They resubmitted it sorry
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Momushka: You may be having a little bit of an attack....but who is more entitled. It's perfectly understandable as you get closer and closer to your surgery. I don't have tons of knowledge but I do think I can answer a couple of things.
It is normal that you don't yet know your ER plus or minus numbers and HER-2. That all comes out in your personal pathology report after the lumpectomy. That is when you will get as well the Stage and Grade numbers of your tumor. You do as well find out about your nodes too, then.
Yes your surgeon is quite optimistic and that is generally based on what he knows right now. I'm sure your surgeon ordered those tests ( probably like everyone's Dr/surgeon does ), because you and he as well need the peace of mind they will bring. That will put you both on the same page....dealing with ONLY a hopefully small ( 1.5 ) centimeter tumor caught soon which should put you in the category of requiriring less treatment than many of us end up getting.
Only God right now knows for absolutely sure, but based on the information you present I would have a very strong, hopeful attitude.
I hesitate to tell you this....but maybe you will GET some benefit. I had a very small tumor in the beginning. Up above it and slightly to the side I also had a large bruise that I had gotten a few months previous. My surgeon lifted that bruise out, had a feeling ( God works in mysterious ways ) and kept feeling around the **bruise** area. She found a second cancer that had apparently been hidden under the bruise. It was bigger than the first one as well as actually a different kind.
Up till that time I was only going to have mild radiation after my lumpectomy. I ended up with 6 mos. chemo and 7 wks. of radiation. I am fine now, doing wonderful on my 5 year pill and absolutely no reason to think I'm not going to continue being fine. I chose to tell you this because I'm pretty sure you don't have a bruise, and so you will know that no matter what comes you will make it through just fine. I did not have this thread to come to when this all happened so I got stuck with all my fear and turmoil, dread and depression......and only found a home here waiting for me right before my first chemo treatment.
Actually, I'd be more concerned ( denial ) if you weren't having some mood swings, upset, and a mild lost of control......my dear friend....you are sooooo normal. You are far from crazy....now is just a very easy time to feel out of control and every step you take is likely to make you feel you are losing your balance.
Just remember....those tests though a bit scary will bring you peace of mind about the rest of your body. The first thing you'd think after your successful Lumpectomy...is" Oh my gosh, what if the cancer is somewhere else ". You will not have to ask that question and you can then put all your energies into healing after your surgery and getting back on your feet. Then on to the next step.
After you get your pathology report...there is a page on here that will help you make sense of your report. I had to study mine ( even after a nurse gave me many assurances ) several times to make sure I was REALLY ok and that I had been TOLD everything. You see....we all have **hurdles** of miss-giving and big discomforts....but we did get through and you will too -- just as normally as we all did once we got through the moments of hysteria. You are going to be just fine.
Hugs, Jackie
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Momushka, I had a core biopsy, which gave the er/pr and HER 2 results. Size was estimated by MRI, CT, Ultrasound and feel. The nodes can sometimes be felt but until a Sentinel Node Biopsy, mine was done at same time as lumpectomy, they cannot know if positive or negative.
SNB involves removing one or more lymph nodes, and a quick frozen section is looked at immediately. IF no cancer shows, they close the incision. IF suspected cancer cells, they take more nodes. Mine were negative, but that does not rule out a complete pathology needed to exam more thoroughly, and it takes about a week to get those final results.
I had " deep conscious sedation " for the lump and snb - which is like La La land, no memory of anything after the needle goes in. Recovery is almost instant, no headache, can eat and drink, pain meds can be given immediately.
The dye injection for SNB is thru the nipple - I had 3 injections and they HURT a lot, but not long lasting. A wire was inserted during a mammogram of the affected side, little pain with it. They tape the wire down. The stress factor is very high - I was given Ativan before the wire insert.
Sequence of events for me: Clothes off, check blood pressure, temperature, weight after putting on (lovely) gown... History reviewed, talk w/nurse and doctor. Ativan given (pill). Wheelchair arrived and an escort to push it. Mammogram with wire insert. Nuclear medicine area for dye injections. Back to surgery area, ( I had a port ) Discussion with anesthesiologist, who did not want to use port, but doctor told to get a move on and use it. Saline started via IV, Off to operating room, got onto table and IV started - almost instantly in La La land.
La La med stopped once I was in recliner in recovery area - guess they lifted me into it - I do not remember. Saline still going, Got drink of ginger ale and soda crackers. Doctor and nurse discussed after care and when follow up appointment was. IV removed, and son drove me home. Very little pain after, but I took pill to avoid.
Hope this helps a bit. Each is different, but the general idea is here. Good Luck, prayers and hugs for an easy time of it. Nancy
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My brain was on overload: I had 16 rounds of chemo before the lumpectomy. The chemo zapped my tumor and only dead cells found inside the area removed.
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Momushka, The tests seem so overwhelming, don't they? And the whole thing is so scary because we don't know what is normal protocol and what is not. It sounds like your tests are all ones that need to be done to access your condition better, and thus are pretty routine. Still, we worry and stew about them and you'd be in the minority if you didn't do this. Take it one day at a time. Try not to read too much into anything until you have the pathology report after your surgery. It will tell you everything you need to know and will help you make the next decisions. It sounds like they caught yours early, which is a BIG plus! Hugs to you as you go through this scary part of the journey.
Rita
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Hey Jo.....I love to hear that you've already lost 5 pounds. Perhaps there's hope for me in the future. I still have 3 years on the Arimidex but I've always wondered if the weight would come off easier when I was off the drug. Hugs to you!
Rita
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just adding a quick two cents to what has already been covered for Momushka and then I will slip back into my own little world.....
When I had my sentinel node preparation, I had 4 nuclear dye injections into the nipple....my Dr prescribed a cream for me prior to that day, not EMLA but similar, a stronger lidocaine....I put it on first thing in the AM , lots of it, and covered it with saran wrap, I barely felt the injections, truly and I would strongly advise asking for it. I also had a double needle localization that day with no sedation or medication at all, just the numbing cream and a little bit of lidocaine injected, again nearly painless. There are all kinds of things to make this road easier, just ask for them. Best of luck to you, heartfelt thoughts and good vibe prayers.
I went to a 6 hour Breast cancer Panel Discussion on Saturday with all the top oncologists in my area and all the news from ASCO if anyone has any questions on anything that I might be able to help with, I took lots of notes
Love and best wishes to everyone
jan
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Gosh, Jan, I wish I would have known about that numbing cream. I would have been asking about that before the sentinel node biopsy, I guarantee you that! I sure wish I lived closer to you. There are so many informative sessions about bc in your area. You're really lucky that you can take advantage of them.
Have a good day..........Hugs!
Rita
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I avoid any creams or lotions on my skin that are not specifically anti allergic. My skin is very sensitive to soaps and lotions and adhesive tape and scrub soap. I had dermaplast or dermabond, I forget its exact name, as the dressing on my surgical wounds instead of regular dressings. It is a liquid that they paint over the wound and it eventually peels off, sort of like a layer of skin, BUT does not take the skin off. If you discuss these things with your doctors, most will get what you need.
As an aside, if you get a cut or open area on your arm or leg, use liquid bandage. you can see it healing and it is basically water proof and helps avoid the "nasty bandage" scenario.
As soon as my second cup of coffee is done, I am going for a walk while it is "only" 75 degrees. This is part of my new plan to move around more and exercise my achy bones. Then Thursday I have my (hopefully) next to last Herceptin and there will be more achy bones.
Hugs for all, Nancy
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JO, your posts are so uplifting - a blessing. I still have several years on the Arimidex but because of your info have already decided that when the time comes I will wean myself off over a period of weeks or months. That's why these boards are so precious because of the "additional" information we don't get from our med teams. I have chosen to not believe they do this on purpose, just as you say, everyone is different.
I agree about being selective of the boards to read. They are all very helpful but one size does not fit all. Different dx and stages have some unique issues that the rest of us can only imagine; sort of like non-bc friends and family cannot know exactly what we are feeling. I think it may be okay to occasionally visit to keep things in perspective but to not dwell. JMHO
Back to work - have a great day everyone.
Blessings.
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Hi Ladies,
Momushka, I have Stage IV cancer. Stage IV only means it has spread to another part of my body, not necessarily that I am on the road to death. I evidently have several years to live yet. I am 64 and have no plans to live forever so that is not scaring me. People have gotten better from Stage IV because of some of the drugs that the Onco's (oncologists) use now. People have actually gotten rid of all the mets (metastasis) to bones and other parts of their bodies on some of these drugs. That is what is meant when we say a little information can be to much.
I am on a Stage IV list that is very helpful because a lot of the women have survived many years with Stage IV cancer. One lady is an 18 year survivor so far with more then one type of cancer. That is reassuring to me, I guess I can choose to see the half empty glass or the half full one. I choose the see the half full one. Although I did I have to search to find the right Stage IV list that was uplifting and positive for me, it is not the one here.
I won't even approach giving you any advice because the advice should come from you doctor, we on this list "are not doctors." I have a degree in Health Information Management" and I am never allowed to over ride the advice a doctor gives. I can only tell you how it is for me. I had to work on developing an ability to feel what is right for me from inside of me. I had to meditate to do that.
The first weeks are hectic but do understand that the testing is for eliminating any other bad things, which just means you will go into surgery with a lot more faith that you will come out just fine. Also you are in the very early stages, the people on this list can share with you much more knowledgeably about the early stages and surgery as I haven't even had surgery yet.
My biggest problem right now is that the Zometa I am getting once a month for my bones sends me for a tail spin for about a week and a half. I just get the blahs and don't want to do anything. Then I am fine again for another two and a half weeks. I will learn to live with that. I can also tell you that the Arimidex has not had the adverse affects on my body that it seems to have had on others. In fact it is reducing the size of my tumors so is making me feel better. I do crave sugar but I haven't really gained any weight. I am back down to the 200 I was the first time they weighed me, in fact I lost 17 pounds when I started on the Arimidex. At 5' 7" I can handle 200 lbs. nicely. The Arimidex Pamphlet I was given states that the Side Effects (SE's) can be weight loss or weight gain.
Like someone else said, each of us is different and each of us reacts differently to any one drug we are given. There are people that have no trouble at all with Zometa. I just chalk my bodies reaction to the Arimidex and Zometa up to my bodies chemistry. You will have to decide for yourself what is best for you.
I wish you the best. I think you are in a grand position, you caught it early and you are comparatively young yet. You will probably be just fine. Just keep a positive attitude, as that really helps.
Lots of hugs, PamW
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Jan,
Was there anything new in the reports on length of time recommended to stay on Arimidex and similar meds? I know the oncologists at MD Anderson are leaning to another 5 years after the initial 5.......... but so far the results are not in as to how this will be in the long run. Thanks ahead of time for your response on this ......would also want to hear any new findings on BC in general that may have been discussed. Again, thanks
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I guess I know nothing about Arimidex because I am er/pr negative and HER 2 positive. Is that the reason?
I should finish Herceptin July 16 and wonder if there is anything after I am done with it? Dr appointment on Thurs, so will have to ask if I am then done, finished...
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Jan The NP that injected the dye for my SNB told me they couldn't give me any kind of numbing medication because it would "interfere" with the absorption of the dye. He just kept saying, "Don't hit me!" as he did the injections. HA! If I EVER have to undergo that procedure again I will DEMAND the cream--Knowledge is power!!
Was there any new information concerning TN?
Chooks Hope you are having a restful evening. Take care. Helen
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My surgeon...Dr. Ryan ( a lady ) always injected all of her patients with the sentinel node dye ( it was blue ) and I really never felt a thing. I was not sure where she injected it --- guess whatever she applied first really worked.....but then she quickly massaged the breast....to start the dye moving to where it needed to be. I had a big blue spot there for almost a year later which I guess sometimes happens. I had three nodes ( sentinel ) and all were fine so I did not have to lose too many. Don't know but I hope this helps as far as any lymphedema problems.
Nancy....most of we ladies who are taking a five yr. pill were er or pr positive---which means that the tumor was being fed by hormones. The pills interfere so that this can no longer happen. If you are Her -2 positive, then the tumor would I think have been fed by protein. You definitely need to talk to your doctor and see what he has in mind for after your Her therapy is done. I know several ladies who have had Herceptin and do take one of the 5-yr. pills.
Hope you all have a good day.
Hugs, Jackie
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Hi Ladies,
I was ER+ and PR+ but HER2 - they were hoping I would be HER+ also and I would have received Herceptin infusions all of these are non chemo type drugs. No hair loss but the Herceptin is hard on your heart. The HER2 protein is a growth protein that is why they like to have all three be positive. I could have chemo for the HER2 negative but they haven't deemed to do that yet. I think they are waiting to see if the Arimidex does the job and until I am surgery ready and I have no idea when that will be. It will be 6 months at the end of August, I bet they redo some of the scans (bone, Cat, etc) to see where I am then. I haven't asked, I intend to enjoy my summer and my vacation and then I will worry about it.
I can tell you one thing, it will be a cold day in some dark place before they put a needle into my nipple without a number. I mean --- numbed dead!!! LOL It is horrifying for me to just think on it. :-O
Eeeeek,
Hugs, Pam
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I had my snb done when they went in to get clean margins on my cancer and I was under when they put in the dye to find the sentinel node. No worry, did not feel a thing and could not tell afterward how they put the dye in. Annette
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Thanks to all of you for your words of wisdom - as always. Have laid off the boards for a bit - well, I was banned for 24 hours so that helped - I didn't know we could only post 5 times in a 24 hour period - it's OK - it was good for me to lay back a bit.
Now that I understand that the nuclear nipple needles are for SNB I think I'm not even having it - surgeon spoke to me about checking the lymphs, nothing about sentinel.
Finished all my tests (calming, meditation and LaMaze breathing still work) and am ready for surgery on Monday. See you guys on the other side
Really, really, really, thanks for all your support, warmth, hugs and love. Hope I'll be able to give back to some newbie (unless we all get our wish and there are suddenly no more newbies) a fraction of what you guys have given me.
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Hi Samedaynurse,
I just started my radiation treatments yesterday. In six weeks, my oncologist is starting me on Ameridex (sp?). What supplements were you advised to take? I am very concerned about the side effects.
Roseann
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Hi Roseanne, welcome (bittersweet, we know). I've been on Arimidex for 3-1/2 months and also take calcium (1500 mg) vitamin D (1000 mg) which may help with bone loss and a multi-vitamin. I also take glucosamine/chondroitin supplement for joint issues that pre-date BC.
Hopefully in addition to many of these boards you are also reading/posting on the June Rads thread as you will be with others going through rads at the same time you do and that support will prove valuable.
Blessings.
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Flyby post! Jo - 5 times in 24 hours is only for newbies. Think someone mentioned that they started this policy to cut down on spammers. Back later. Bye!
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