Can we have a forum for "older" people with bc?
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Luvin this thread!!!
Saw my oncologist yesterday. She spent an hour telling me all the reasons I shouldn't have this bilat mx... ie: most women don't like their reconstructed breasts......most women are sorry they did it after they see them gone........most marriages break up when a woman has a mx....... Is this her job to talk me out of what I've already made up my mind to do??
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JO - I didn't have an oncologist - at first. At the advice of my cousin (a 10 year cancer survivor and a nurse) I immediately went to the best breast cancer surgeon near me.......and he kept assuring me that since my pathology showed I was only a Stage 1 and Grade 1 - it would be very unlikely that I'd need chemo. So I had my surgery without even THINKING about an oncologist (my surgeon never even suggested I see one prior to my surgery) so I was very surprised when an oncologist came to visit me in the hospital. He was a lovely gentleman, very upbeat and smart - and he said "no worries - you're early stage with no lymph node involvement so you won't need chemo." He even had my tumor sent out for Oncotype DX testing while I was still in the hospital - and he was happy with the results, saying, "you're at a low risk for recurrence."
A month later (after I recovered from the MRSA) I was sitting in his office, a prescription for Arimidex in my hands, when the oncologist said, "Just wait here one minute while I have your FISH report faxed." (Somehow my breast surgeon never followed up on my FISH.........my Her2neu status had been "equivocal" so he had it sent out for FISH test but he never got the results.) So you can imagine my shock when I'm ready to walk out the door and go home, when the oncologist comes into the waiting room and says, "Mrs. V come back inside - we have to talk." He had the most serious expression I've ever seen yet on any of my doctors since this journey - and it was shocking because his usually smiley happy face was dark and drawn. Sigh...........so back in I went to learn all about how to treat Her2++++ cancers. I didn't have much fight left in me after my near-death experience with MRSA..........it was just more bad news on top of everything else. He then told me that my Oncotype DX score was 23 - not REALLY a low risk - but more like a "low intermediate" risk. I felt like I was on the "bad-luck roller-coaster" and it was just going to continue going down-hill. Fortunately my oncologist was an "original thinker".........he said Herceptin works well with ANY chemo, so I only needed 4 months of Navelbine (which didn't cause total hair loss or heart problems.) He said the Herceptin with Navelbine would reduce my recurrence risk from 14% down to 7%. This sounded good to me - because my ORIGINAL risk of getting BC was extremely low - the online calculators put me at 2%..........and knowing I was already on a "bad-luck roller-coaster" I didn't want to temp fate.
The next BIG blow to my mind was finding out from the nurses that I definitely needed a chemo port installed because the Navelbine would burn my veins. The "bad-luck roller coaster" just lurched me big times - I felt like I was falling out of my seat in the dark!
I tell this story because it's amazing how quickly the time has passed. The four months of Navelbine went quickly - and in one more month I'll be finished with the year of Herceptin. Of course I didn't suffer as discomforting SEs as other women.............but I do understand how awful it is to hear the news that you need chemo. Would I do it again if I had a recurrence? Yes.........because after what I went through with the Navelbine...........and what I've read here online, I've come to understand that my body is tougher than my own emotions.
So JO - my question to you is - do you know your Her2neu status? And do you have a questioning "doubting Thomas" kind of mind like I do now? I have learned so much from this journey - I've learned that a surgeon's reputation is only that - he can slip up any time along the way - and I like to have "checks and balances". You must advocate for yourself - ask a lot of questions - get second (and sometimes third) opinions. My tumor was examined at two different laboratories before I started on Herceptin - both confirmed that it was Her2++++. So much depends on your age and medical condition prior to bc...........so much depends on your own personal comfort level with risks. I have never been a big gambler (other than an occasional Lotto ticket or two)...........so I felt that the benefits of the chemo regime my onc suggested outweighed the negatives. If I get a recurrence, at least I'll know I have fought this beast with every weapon available to me that my body could withstand at this time. Thus.........my Signourney Weaver avatar - the picture of her near-bald head holding that submachine gun while she blasts away the Alien's helped me stay strong through so much of this roller-coaster ride.
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Mikita - I wish I had seen an oncologist BEFORE my mastectomy and reconstruction. After all I went through - all the infection and disappointments - my oncologist, who is a very caring man, held my hand and said, "If only women would talk to their oncologist before they decide to have surgery." And he was right...........the oncologist doesn't have anything to gain if you have surgery, there's no conflict of interest. I would seriously listen to your oncologist and keep an open mind. I was a lot like you - I feel now I made a terrible mistake getting a mx with reconstruction. I didn't really need it. My DH has been supportive no matter what I chose to do........our marriage is built on a solid bed-rock and it can withstand this awful roller-coaster - so your oncologist may be using a poor bedside manner to talk to you.
Mikita - I see your tumor was DCIS, Stage 0, Grade 3 and that you had your ovaries removed. Did you go for BRCA testing? Also - did you have any prior abdominal surgeries? I had 3 c-sections which later I found out from a study online increases your risk for abdominal donor site complications by 24%! (this includes wound dehiscence - seroma - bulging and hernias.) I posted this information on another forum here at bc.org.
One other thing - once I do research and get an idea in my head, I can be very stubborn. I don't want to listen to other opinions. Recently I was going through the same process all over again - trying to INSIST that I needed a hysterectomy and oopherectomy to reduce my risk for gynecologic cancer. I went to a very respected gynecologic oncologist who kept insisting back at me that I did NOT need it. We were like to arm-wrestlers - neither one budging. Finally he agreed to do this surgery because I'm having open-abdominal surgery anyway this summer to fix the hernia and take out the gall bladder, and my general surgeon stuck up for me. Once he stopped fighting with me, I was able to think more clearly. I realized that I was being too "brave" - the way I was when I insisted I needed a mastectomy. I called him back and said "you're right - I don't want the surgery now - I don't want any more risks for complications. Less is more." I will have to live with my own fear of gynecologic cancer (this fear is based solely on the fact that I have a fibroid and thickened endometrium.......and a tiny ovarian cyst that 3 doctors have told me is nothing to worry about.) My fear of surgical complications (like getting MRSA or another infection - or worse - having problems with my bladder) are more real to me now than the fear of cancer.
Sorry to be such a wind-bag tonight.........I just hope my stories help you see how it's possible to change your thinking - to change your mind. Mikita - if you still don't feel convinced of what your oncologist is saying, you should seek a second opinion. Possibly another oncologist might agree with you - or if not - present his arguments against major breast surgery in a better way. I will say one thing - my mx and reconstruction were LIFE ALTERING in so many sad ways. Not everyone has a wonderful outcome..........if you do go through with this surgery, I'm sure it'll be the right decision for you. I'll keep you in my prayers as you grapple with this gut-wrenching decision!
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I am 56. I have not had chemo as my oncotype scores were low enough that I felt comfortable opting out. I don't know what I would do re chemo if I had a recurrence. I suspect I would do the same thing I did with this diagnosis - look at the benefits versus risks - and make a choice.
When I was diagnosed at 55, I was told that I was still a young woman. I don't know about that, but I was not post-menopausal at the time. Tamoxifen seems to have changed that...
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Mikita, it is your oncs job to discuss your treatment options, including surgery, with you.
I agree wtih swimangel that a mastectomy is a life altering operation. I really wish I could have avoided having mine. If your oncologist is recomending against one, I also think a second opinion is a good idea.
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Testing to see if my avatar shows up.
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Thanks, swimangel, for sharing. I really do know all the pros and cons of this surgery. I would give anything if I didn't have this decision to make, but, for me, I think the bilat mx is the only way I can live my life with a little bit of peace. I've worried about ovarian cancer for 20 yrs. My mom died of oc. I have one maternal aunt died of bc. Presently, 3 first maternal cousins with bc. Cancer is well known in my family, so my onc recommended the genetic testing. It came back negative!! She was happy about that and I felt I was blessed. Then, went to Johns Hopkins Breast center and the surgeon, after reading my files, said she was sure if there were another test for more genes, which they haven't identified, that I would be positive for one of those. AFTER I told her my decision, she said she'd do the same thing and thought I'd made the right decision.. Ok, I've read on here where ALL surgeons say that..
I also feel blessed that I don't have to do chemo or radiation. I also know if DCIS comes back, it will come back as invasive cancer, THEN I would have to have chemo. I guess what I'm saying is that I feel I'm doing all I can do NOW to hopefully avoid a reccurance.
I also know the cancer can come back in other organs, but if it does, I will know I did all I could to try to avoid it. With my lumpectomy, and if I do nothing further, and it comes back, I'll kick myself knowing I may have avoided a reccurance.
I have a friend who just went thru lumpectomy and radiation. THEN, had a mammo., 2 MRI's and ultrasounds--all clean. They told her she was cancer free in Oct 08. However, the radiation made a mess of her already small breast, so she decided on a mx for it. She had it, pathology report came back--more cancer cells. Now, she's having a hard time with this and wondering what to do with the 'healthy' breast.
My surgeon at J. Hopkins told me that I had to make my decision based on what I thought I could handle. 3 month or 6 month mammo's, MRI's......then if anything suspicious, waiting for results, yada yada yada......I can't live like that. I have about fell apart with this dx in January. This has worn me down to a pulp.. If I had to live with that fear, I know my body would always be run down. With being run down, my immune system wouldn't be able to fight off any cancer cells. If I take away the probability of reccurance, I feel I can get on with my life.
Yes, I will always have the fear of reccuring cancer. It has already changed my life, but I have to do what I think will be best for my peace of mind. I know we're all different. We all make different decisions. I pray this is the right one for me. I already grieve for my breasts, but in my mind, it's better than giving my life.
I'm so sorry you aren't happy with your decision. I wish we could all be happy with whatever we decide, I wish there was a cut and dry 'right' answer for all of us.
I'm just taken back by all the people on this site. I couldn't believe so many women have been stricken by this disease.
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You guys are SOOOOOOOOO great......I just got home from work and I am giggling here about over 55 discounts and those of us who are too pathetic to post a picture and YEA , JO figured out how to post her saying....never put it past any of us to do what needs to be done !!!! or what we want to get done.......
Northstar its GREAT to see you back......we all owe you , for giving us each other.
Arimidex.....the biggest of our topics and concerns, and that which we blame EVERYTHING on.... I am so sure, that like most meds, there are side effects, nasty ones, and there is a percentage of women who are plagued with them....the women I know ~in real life~ who take or have taken Arimidex are anywhere from 3 years to finished with it , and without exception all have developed some bone and joint pain ( which we would probably have to some degree anyways) but very few of the other side effects, certainly not enough to make them stop the drug. Personally Im taking it with the best possible attitude....and Im planning to cope with my side effects and figure out a way to fix them if I have them ( and if I ever bitch.....you can ALL remind me that i said that) so far.....I am AOK with the life saving drug of choice. Like tonight.....my back isnt very happy....but, I just spent 12 hours on my feet....is it the Arimidex or the insanity of doing that at my stage and age......
I am SO rambling now.....I think I am really tired....sometimes I still blame that on the radiation *giggle* gotta jammie up , night night everyone ! So nice to see new names every day.....along with those of you I feel I know so well......the instant sisterhood.....not unlike the Traveling pants
jan
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Okay, all of you smart people, I did what swimangel 72 said about posting an avatar picture and nothing happened. What did I do wrong??? The picture I want to post isn't of me, it's of my adorable Maine Coon cat when he was an adorable kitten, a few months ago. I was thinking about posting pictures--it's an interesting question. I kind of like not knowing what other people look like. We sometimes judge people by appearance and I guess I'd rather not do that. Just my preference. You can judge me as a furry little kittenish person if you want.
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ooops now I have more to say.....
Swim Angel you are much nicer to see than Sigourney
Your story never ceases to amaze me.....all so interesting....JO.....I do not have a medical oncologist. I have researched and thought it through....ad nauseum....my breast surgeon is a female who specializes in breast surgery and only refers you on to an oncologist if chemo is recommended for ANY reason, if not she sees you every six months for 5 years and beyond....she is involved in research and belongs to all the breast cancer boards and has the most up to date info., sends me forums to go to and studies I would be eligible for, in addition, my Radiation Oncologist will see me every six months, so between them I see one every 3 months for the first 5 years.....I am comfortable and content with this decision.
~whispering~ IF....i ever have any kind of reoccurence, I will stay with the same physicians....and maybe then.....move on to include an oncologist....trust is so important.....and I trust these two drs completely and have worked with both of them long enough to know their reputations.
just jan again
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Got my pix on! yea!!!
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welcome Maire *s* and welcome to *our other sisterhood* the working benefit carrying 60 something women of the world......who dont know what the word retirement means
and now....really good night
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Mikita - you have me convinced - I believe you're choosing the right path for yourself and God bless you! There are definitely other genes besides BRCA which will be held responsible for different kinds of inherited cancers..........and since you're Stage 0 - having a bi-lat mx will be a CURE for you (provided the post-surgical pathology reports find nothing else suspicious.) This will be a HUGE load off your mind - not having to worry about chemo! When is your date for surgery? I'll be praying for you..........in the meantime, keep your immune system in tip-top shape right up to the morning of surgery. Avoid everyone with colds - be selfish if you must - don't even shake hands with people unless you're wearing gloves! I've become such a germophobe........learning about MRSA does that to a person. Be sure to talk to your surgeons about all the preventative things you can do to reduce your risk of MRSA........including showering with anti-bacterial washes. You might even suggest to your sugeons that you see an infectious disease specialist - to be sure you're not a silent carrier (it's a simple nasal swab) - because you don't want to infect yourself during or after surgery. And please forgive me for my negative view of surgery - I'm sure yours will be just fine - you'll have all of your sisters here praying for you, me included!
Jan - Arimidex hasn't caused me any really bad SEs - except when the weather changes, I feel it in my bones more than I used to. Ramble away dear heart............I so enjoy your ramblings and those of all our sisters here!
Edited to add - Northstar I'm not sure why your avatar isn't working. Is the photo you're trying to upload too large? Maybe I left a step out - I'll go back and double-check what I wrote.
Marie - you are more than welcome to join us here - there's always "Room for One More"! (does anyone remember that Twilight Zone episode? THe one with the elevator? ...............not a very positive image for our forum here, but I say it because the Irish in me always liked that dark humor.)
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Thank you all. I have some se's from Aromasin but not as bad as Femara.
Working on that avatar ..I have a few really neat photo's (not of me) that I took. I'm not great with technology.
Mikita I have only had one regret since surgery and that was I didn't do the double mastectomy. But looking back it would have slowed down my treatment and there were other issues. I think that your higher power helps you make the correct decision for you. In the long run, my decision was the best for me. Take care
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Hi ladies....Just fell upon this thread tonight. I've been around a while since Jan. of 08 when for my 59th birthday I was given BC. No celebration but did celebrate my 60th in Jan.of this year. Had a lumpectomy , chemo and rads. Started Aromasin for 6 month and went off because of the painful muscle and joint pain It turns out that the drug was causing a elevation of the liver enzymes. I'll probably start Femara next week and I'm dreading the not sleeping and aches again. It's been a stressful journey so far and hopefully it all gets better with time.
I'm looking forward to sharing with the rest of you "old hens".
Hugs to all, Artsee
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swimangel: I didn't see your post as being 'negative' towards surgery. You were just giving me your story and I honestly appreciate that. I want both views of this and I've had a mix of everything. That's what makes us all different.
My surgery date is March 30. I have a few more weeks. And I appreciate your prayers. I believe being on many church prayer lists has gotten me here so far. I prayed that God would send me to where I should be, then I just decided to go to J. Hopkins. If it's not the right choice, I ask him to let me know that too.
Great thought on the gloves, etc. I'll remember that, altho I think I'll just stay inside and avoid all those germs out there. (yea, right.. after 2/3 weeks, I'll be dying to go outside). Also, I have a 7 hr ride coming back home, so I'm dreading that.
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HI everyone, I just registered, have been looking for this type of website to discuss various cancer related issues. Talk about being old, I will be 75 in March. Underwent double masdectomy with reconstruction in January 2008, Did not need chemo but did undergo radiation. Everything was going fine until the right breast became infected during radiation and had to have the expander removed. I am scheduled for have the expander replaced with an implant in my left breast in March. The Plastic surgeon is recommending the Latissimus dorsi flap for the right side but am very undecided about have it done. I am very athletic, enjoy golfing, bowling and yoga type exercises and am not sure how the latissimus flap will effect me doing this activity. Would be interested in hearing from anyone who has had this procedure and whether it has affected your physical activities. I am on Armidex and don't only notice a few minor side effects. Lizette
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maire: Did you have mast on diseased breast or lumpectomy?
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Hello everyone,
Although I've been around here for a long time, I just stumbled upon this thread. I've only read a couple of pages of posts so far, but I love the idea of having a forum for "older" ladies (btw, I'm not at all offended by the word "older"). I've never posted very much, frankly, because I always felt a little out of place, since I was usually older than most of the other ladies posting. I do feel that some of the concerns that we face are different from those of ladies in their 30's and 40's.
I was dx in 2003 at the age of 56; I just turned 62 a couple of weeks ago. I went through natural menopause at the age of 47...YEAH! In a few months, I will reach my 5-year mark on Arimidex. I don't think my onc. wants me to continue taking it, but it's scary to think about stopping since I was Stage III. I haven't had any really bad SE's, mainly stiffness in my ankles and really bad vaginal dryness.
My mother was dx almost 2 years ago at the age of 83. She had Mammosite radiation, which was wonderful for her. I think the grueling routine of going every day for six and a half weeks would have been very difficult. She had no problems with the Mammosite and is now taking Arimidex.
All the best to everyone,
Trish
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When I was diagnosed I said off with their heads! I was not going to worry about recurrence. I would rather not have had surgery but it was just the logical thing to do. No regrets although I am really looking forward to reconstruction in 9-12 months. Tonight I ordered a mastectomy bra, a pair of protheses and a cami. I have been resisting this since my surgery on 12/19 thinking I will be having reconstruction and won't need this stuff but 9-12 months is a long time and I would like something to stick out further than my stomach!
Love to you all.
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This is a wonderful website, however there are some forums lacking. I cannot believe i have heard all my twenty years of being a diabetic, how much it increased my risk for breast cancer, yet i have yet to find a spot on this forum about diabetics with bc!!!! I am a senior, was grateful to find this thread. Senior women have some special concerns and i like the idea of a forum just for seniors. At age 65, i am different from the younger women because i already am on lots of other meds, have joint issues to consider coping with drains and lymphedema, so this is something i need to think about in choosing the direction to go regarding rad, chemo, surgery. A lot of older women might not have support either. My daughter lives three thousand miles away and my husband is disabled. My friends have all died from cancer, honestly. My 87 year old mother is alive and married, my brother lives out of town. I have two good neighbors and two friends left. My one friend has bc. It has been one funeral after another since 2008. It's very dreary to deal with. My other gal pal just broke her leg at 68 from osteoporosis. Newly diagnosed, i am coping with Medicare constraints and lack of info about Medicare and bc. My husband is living and retired from GM, not a good place to be right now because he could lose his health care from Gm which supplements the Medicare. Who will inject my insulin after surgery if my arms won't be able to move? I need home health care..surely. Its awfully overwhelming. All these decisions to make and my questions get answered by the doc's office staff as if i were 30 years old. What if i don't spring right up after surgery? What if it's icy out and i cannot drive myself home? It ain't easy to have this bc as a senior. How will i walk on the ice if my arms are unabled and not capable of holding my balance? What if they schedule me during a March blizzard? How will my disabled husband sit thru hours of surgery waiting for me to recover? Who will drive him home?
OMG....and LOL....I need chocolate right now.
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Hey folks, just discovered this topic--- good idea! Coming soon to Birthday number 62. After 32 years of fibroid cysts, aspirations, needle biopsies, yearly mammo/ultras, then 6 mo. m/ultr., finally heard the C-word in Nov. 2008. My choice with no need for discussion was double mastectomy, no reconstruction, and get on with the program. As it turned out, it was a good move since more troublesome issues found in both breasts. I'm now doing my chemo with 3 treatments of TC down and 3 to go. Many have talked about this as a journey--- what a trip it is! I've had my "blips"; I've also had so many blessings: wonderful husband, close family members and friends, and the numerous acts of kindness which so often flow in a small community. So far, all has been doable but to tell you the absolute truth, the future Arimidex with Zometa is as scary as anything else to me. I have not addressed with onc. yet since just trying to take things one step at a time. Meanwhile, I'll be peeking in and send you all best wishes....
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Testing to see if my avatar appears. It was during chemo, which I finished oct 30. I have hair now, but often wear that hat, my favorite one.
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Woo Hoo, I did it and only 1:15 am...
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Artsee: Cluck Cluck! (and proud of it!) Maybe, if we're successful in getting our very own forum we could just call it "The Coop"!?!
Re: the q. a while back about doing chemo again, I'm so not sure. I'm scheduled for my last one next Monday and am so weary of it all now, I really don't know what I'd do if faced with the decision again. I guess alot depends on how much older I'd be than I am now (60) and how effective it would be. I'd definitely need to find a better place to get it, too! OMG I hope I never have to make that decision again.
Thanks again, Northstar... we need this place!
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Hey Lemonjello! I am 62 with diabetes. I didn't know having diabetes increases your risk of breast cancer although it doesn't surprise me since it increases the chances of everything else!
I think you will be fine. I had a bilateral mastectomy on 12/19/08. Unfortunately, a rare occurrence happened and before I could leave the recovery wound I had to go back into surgery for a broken blood vessel. I think it was at that time that my expanders (placed in at same time as mastectomy) got infected because one month later I was back in the hospital to remove the expanders due to infection.
With my diabetes the plastic surgeon doesn't want to touch me until I heal completely - he estimates 9-12 months! Damn diabetes.
I, too, have joint issues and cervical/spinal compression, neuropathy and a host of other ailments and like you take a bunch of pills.
But I am still here. Look at some of the posts under support. You might want to call the American Cancer folks about transportation needs.
Sisters -- some suggestions to help Lemonjello?
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Jo
In answer to your q about med. onc....I first found a BS surgeon, then saw a radiation doc and then a med. onco. I also have a primary care doctor but I see a family nurse practioner instead. So I now have 4 doctors.
A friend gave me the name of the BS surgeon and I made an appt. even before I got the results of the biopsy, just in case it was cancer, which it obviously was.
As long as I had to get cancer it came along at the right time...I am on Medicare and also have supplemental insurance. I have had no out-of-pocket expense.
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achi, I am the same as you, er/pr negative and Her2 +++. I had dose dense chemo - total of 16 doses. It was no fun, but YES, I would do it again. The chemo did zap my tumor and I also had no node involvement. Maybe I am pushing my luck, but I am not doing radiation.
And yes, I have a medical oncologist who "walks on water". She has been wonderful and has an oncology nurse assistant whom you can call and ask questions, or leave a message and she does get back to you the same day (unless the weekend).
My ob/gyn was the one who wrote the mammogram order since I had found a lump and was due for the annual one. It was immediately followed by ultrasound and a biopsy was then ordered, for 4 days later. I heard nothing from the ob/gyn, so phoned the office to ask. The person who answered the phone said " who is your breast surgeon ". I knew at that moment I had cancer, but felt like I had been shot in the heart. But she could not tell me if I had cancer or not. I told her to have the doctor call me ASAP. When the doctor phoned me, she was very callous, told me the name of a breast surgeon and said she would fax the report. End. Period. I will not go back to that ob/gyn again, but will use my PCP, who is part of a Women's Health group.
Sorry this is too long a post - only on my first cup of coffee... HUGS, Nancy
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