Can we have a forum for "older" people with bc?

GramE

I am "only" 63, 62 when diagnosed, but also am concerned with a quality/quantity of life debate.  I had dose dense chemo before surgery, lump and sentinel node biopsy in December , and am taking Herceptin every 3 weeks.   The chemo zapped the tumor and I had to go for a re excision to get a full 2 mm clear margins.  The first only got 1 mm clear margins.  I insisted on Deep Conscious Sedation versus full knock out anesthesia and my surgeon was very comfortable with it.   My SNB was clear, so no further node surgery was necessary.  I have a port, which I got after my first of 16 chemo treatments.  

 I have refused radiation for many reasons:  I have 30% use of my dominant hand from previous reconstructive surgeries from a car wreck (NOT my fault), had a frozen shoulder when caring for my husband and mother, live alone, and IF I should have a recurrence, I am prepared for bi lateral mastectomy. It is not that I am trying to get off with an easy procedure, because this has not been easy, but is IS doable.   Tuesday is 10 months since I was diagnosed and it seems like I have had to put medical at the top of my "To Do" list.   I was diagnosed 3 weeks before my only son's wedding.   

As much as I try not to obsess over this, it is hard not to look at the calendar and see "herceptin" or blood work, Mammo, or MUGA, or whatever other medical appointment I need for that particular month.    But I am trying to keep a positive mood and I am good to myself when I have the energy and finances. Hugs and prayers,   Nancy

Britt

Hi everyone -

This is an interesting thread - I am 51, will turn 52 in two weeks, and am still getting my period! It's interesting to read about everyone's different perspectives from the "50 and over" group.  I, too, am a member of AARP,  single, no kids, recently ended a five year on and off relationship, and my mom and I live together - we are more like sisters and best friends than mother and daughter, and she has been my rock throughout this entire ordeal!  If anyone is interested and starting chemo in March 2009, I have started a thread where I have insisted that AGE is NOT an issue!   We have quite a diverse group there - several women in their sixties - and it is very upbeat and we discuss everything and anything.  But it's great to find a thread where women in our age group can share our special and unique concerns.

Best wishes to all -

Maria (am I still allowed to visit even though I am pre-menopausal?

klp

Sharon...you mean how do you put in your state, country, whatever?? On "edit your profile" there is a place to show your location

Marple

Yes klp. Thanks that's what I mean........so tried it.  Here goes.

Marple

LOLOL, well there you go.  Thanks again.

Marple

Sheesh, where is the thread for the computer challanged?

klp

Congrats Sharon!!!!! Now we all know where you live

Marple

Hahahaha, well come on over.

klp

I don't have a passport..and I can't leave my doggie..thanks anyway

Sierra

Hi gals:

golly, I can not keep up with all the posts

but wanted to send special thoughts

for those with Moms in their eighties

They are so spirited and it is not easy

wishing them well and you too

re:  N Home. yes I meant Nursing Home

back later

dont have a computer

so hit and miss

Hugs, Sierra

Sierra

Hi

welcome

I got mine.. period when in my fifties

was dx about 55 I believe..

or maybe more

9 yrs out now

nice you have your Mom

Mine is in a home

with some dementia and often

can not understand some of the things said

great thread here

I am in Toronto, Canada

Sierra

Sierra

Hi Gals:

Another post here,

just wanted to ask if anyone here

lived in San Fran during the Hippy days

I did.. we could compare notes

send me a PM if you did

it was soooo much FUN!

Sierra

Marple

Klp, well we are a great pair then 'cause although I've left my dog in a kennel he's older now and I'm less inclined to plus I don't have a passport either.  I couldn't afford the health ins. needed if I left my country.

klp

Hey Sharon guess we are stuck in our own countries..oh well. I did make it to Lake Louise and British Colombia eons ago..closest I've been.

Motherof7

JO-5

You say you have been on Arimidex for awhile. What kind of side effects do you have? I already have osteoporis, my Dr. says it will make my bones weak. I crushed the ball in my hip in Oct. 2008, had to have it replaced, my bone density test was really bad. I am a little afaird of the Arimidex. I also read where some women get a lot of belly fat. I am 65, I walk each day. I just want to know if any of you ladies have had any problems with the Arimidex? Also, in some of my reasearch, there is a Dr. at Wayne University who has developed a vaccine for the positive hormone receptors, she tried it out on mice and it worked. I just don't know if it has been tried on humans yet. I would be willing to try it out. I live right on the border of GA/FL. I go to the cancer center in Valdosta, GA. I would appreciate any info any of you have. You all will be in my prayers.

Northstar

Hey, everyone,

   When I first posted the question about having a forum for "older" bc people on Feb. 7, I got exactly 2 responses, so I kinda gave up and went to some other forums and wasn't on the discussion groups much. 

    Today I logged on and found 150 more responses!!!    I love it!!!  

    So, Moderator(s), can we please have this as a forum, maybe called "Older People (or Women) with Breast Cancer???

    I definitely think that if there's a forum for "Young Women with Breast Cancer," it is a little bit ageist (or something equally discriminatory) not to have a forum for us older ones.   What do ya'll think??

    I suggest that we just leave that as the title of the forum and let people self-select.  

    I haven't even read all these posts yet.

    I finished radiation Jan. 7 and am back at work (I only work part-time anyway) and doing my pottery--we have a show coming up.    I am taking tamoxifen (my onc. says that the protocol now is for 2 years of tam. and then an aromatase inhibitor. 

    Thanks for all your responses and you go girls!!!!   Northstar

Marple

I apologize for the lack of responce when you first posted Northstar.   Obviously it is a good idea.  Hugs.

klp

Hi Northstar...I responded right away and then you disappeared...thanks for starting this thread. It has really been fun and interesting.

Glad you returned to see what you started

SoCalLisa

Hi everyone..I am 66 years young, but am too old to be a boomer..

I was diagnosed over eight years ago...in right breast

I had a lumpectomy, six months of chemo. another DX so mastectomy...then a year of

tamoxifen and then another biopsy in the other breast with ADH so another lumpectomey..then four years of

arimidex... I finished up with that almost three years ago...

My mother said she didn't feel old until I went on Medicare...lol..

Anonymous

*

SoCalLisa

You are right...it does make a difference...I would absolutely NOT do chemo again

It was a three year ordeal with all the side effects...

klp

Luckily my Oncotype DX score was very low so I never had chemo. I don't know how I would react if I was faced with chemo in the first place.

swimangel72

Hi JO - and anyone else interested in posting their photo, or "avatar". It's very easy. Just click on "My Home" above. Then click on "View My Public Profile" then on the right, click on "Edit my profile". The first box you'll see under Public Profile Information is "upload your own avatar". Click on the "Browse" button then navigate through your hard drive to find a photo that isn't too large, click on it, then click on the "Open" button. Then scroll to the bottom of the page and click on "Save". Be sure the photo you chose isn't too large. You can edit a very large photo using different software. I simply open any photo with Microsoft Office Picture Manager - and then crop it and resize it to make it the smallest size possible (Email - small). I just changed my avatar to show the REAL me (goodbye to Signourney Weaver the "warrior woman"). Hope this information helps! And I hope the moderators give us our own forum - it'd make it easier to find different threads instead of having to read pages and pages in this one long thread - although I must say it's fun to read everyone's stories in one place (time-consuming, but fun!)

Oh - and another fun way to post pictures in the thread itself. While you're typing, right next to the yellow smiley emoticon there's an icon that looks like a tree. Click on that, then put in the url of any photo you like from the internet and click "insert". If you use photobucket or any other photo service it's easy to load your own pictures. Me - I like to post goofy emoticons!

mikita5

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??

swimangel72

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.

swimangel72

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!

lisa-e

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...   

lisa-e

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.   

Northstar

Testing to see if my avatar shows up. 

mikita5

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.