Starting Chemo October 2009

MaryNY

Since a lot of us on this thread had similar chemo schedules, I was wondering if you know how long do we have to continue having mammos and other breast imaging at six-month intervals. Will this continue for five years, then back to a regular annual schedule unless something comes up?

I'm also wondering about the type of imaging you've been having. 

I had my lumpectomy in August 2009. At six months (Feb 2010) I had a bilateral mammo. At one year (Aug 2010) I had a bilateral mammo and bilateral ultrasound. [Suspicious area found in right breast. Had biopsy, turned out to be benign - scar tissue]. Now at eighteen months (Feb 2011) supposed to have follow up imaging. Breast surgeon wrote Rx for unilateral ultrasound (rt breast) and bilateral MRI. Having problems getting insurance to precertify MRI.

How common is it to request an MRI as the form of imaging? I know MRIs are very expensive and I have personal experience of how often they show false positives.

one-L

Mary, I am not sure that I  know the answers to your questions, but I was lead to believe that I would  have a mammo every six months for about 2 years, then they would  go from there.  I had my lumpectomy in Octover 2009, I had a diagnostic mammo in July 2009, when my BC was found.  Then I had a full diagnostic mammo in February 2010, another in August.  I just had my yearly mammo last week and it was not a diagnostic this  time, just  a regular mammo.  I did ask my Onco last visit if I would have any scans or other tests and she said no, just a bone scan to make sure I have not had any more bone loss since last bone density test. 

I am OK with all of this as long as I am not having any problems and so far I haven't.  We are too close together in time line for either one of us to know what is in our future as far as treatment.

MaryNY

Juanelle: what do you mean by a diagnostic mammo? Do they take more images or something?

micheleboots

I am on the once a year schedule already...I had my last mammo while i was getting rads..Now I will be getting one this April just a little over a year later.  It was booked for exactly one year after last, but I asked to have it moved back by a few weeks.  I am going on a much needed and deserved vacation and I didn't want any funky mammos screwing that up...

feistybluegecko

My schedule in Bangkok is different - based on my Surgeon's approach I think.  I have checks every 3 months (bloods, prods and general review by Onc and Surgeon) for the first two years after diagnosis.  One of those (at each year point) is what they call The Big Check which includes mammo, ultrasound, CT scans and any other tests they think necessary.  They can also run extra scans or tests if they have particular questions or concerns (for example they are doing the ultrasound or CT after 6 months because of some liver marks, rather than wait for the year).

After the 2 year point the checks move to 6 monthly until 5 years after diagnosis if there are no indications for running additional checks. Again there is a Big Check every year. After that it moves to yearly.  I feel very well looked after.

Big hugs to you all

Philippa

xxx

valeriekd

Marie I like the the wake up call to enjoy every day ...... Why not? What else is there to live for!

Glad you r feeling well 1-L!

Hope Valentines Day treated everyone well.

Love, Valerie 

one-L

Mary, yes I think that is what it means.  They were taking from just about every angle and sometimes I felt like they were going to squish it good, but this time was different.  I didn't know there  was a difference, but this time they kept saying I was just having my regular mammo and not the diagnostic  and that I wouldn't see a doctor on that day, which I have always seen the doctor and knew before I left the clinic if something was wrong.  I  am glad to get back to the not to worry status.

michele, I know what you mean about not wanting something to ruin your much needed vacation. 

Philippa, boy  do you get checked over.  I don't get that and I don't know of anyone that does in the US.  I do see my Onc every three months, but my other doctors I only see once a year.  I should start getting released by everyone but my Onc on my next doctors visits to the surgeon and the Rad Onc.  I don't know why they would want to keep seeing me. 

Valerie, I did have a great VD and hope  you did the same.  I am feeling better every day.  I am doing more exercising and trying my best to get this extra weight off that I gained.  I have lost 28 lbs and I can really tell the difference in how I feel.

Love all you wonderful ladies, have a great weekend.

Juannelle

MaryNY

Philippa: glad you are being looked after so well.

Hi Valerie: good to see you. It's great that we are all transitioning on to a much better place than we were last year. 

Juannelle: That squishing is so unpleasant. The insurance company finally did approve the bilateral MRI for me but I won't have it until the week after next. I'd almost prefer to just have a mammo, even the ultra-squishy kind as I'm fearful that the MRI will find all kind of suspicious stuff. I had a breast MRI after diagnosis and prior to surgery and I've bad memories of all the suspicous stuff it found which led to more biopsies, all of which turned out benign but left me with scar tissue which now causes confusion in the imaging. 

And Juanelle, a huge pat on the back for you ... you lost 28 lbs. That is huge. I have gained almost that much since this time last year. I really need to do something about it. I use Tamoxifen as an excuse and menopause and the frigid temps preventing me from walking, but the truth is I'm just eating too much. Do you have any tips for someone who has developed a serious case of muffin top?

one-L

Mary, I have really had to work at it.  This was weight that I gained after chemo, when food finally started tasting good again.  I couldn't even get my feet up to trim my toenails and had to do something.  I was miserable, so I started really watching what I eat and started working out with a personal trainer.  I also bought some Wii Fit games and a Zumba game.  I use them several times a week along with the trainer.  I was also beginning to have some other health issues that had to be addressed.  My left arm hurt all the time and I found out I had neuropathy, but not caused by chemo, unexplained is what they told  me and I was having really bad acid reflux and the doctor put me on 2 Nexium a day.  That is hard on you because you have to space your meds out through the day.  When I lost about 20 lbs, my arm stopped hurting and I generally don't have to take any Nexium, unless I eat something spicy.

I still  have about 12 more lbs that I want to lose, however, I am satisfied with where I am today.  When you are my age (61) if you lose too much, then you sag and have bags everywhere.  So I am just wanting to be healthy and not look like I have cancer.  I just want to shape up and lose inches around my waist.  They say you shouldn't have a waist larger than 35 inches, well I am a bit above that, but with Zumba, maybe I can get it off and manage a couple of more  pounds.

I really have to set my mind on losing weight and doing any exercise.  I am really a couch potato and prefer to come home after work and not move out of my chair.  But I am willing to make a few exceptions, if I see results.  The thing about losing weight is, because I have bounced around for the last 20 years, that you have to maintain it off, and that is the hard  part for me.

There are many good programs out there now, some are not expensive.  I do well on the South Beach diet, I can stay on it longer than any others.  I tried Weight Watchers, did OK, but as soon as I lost my weight, I started eating again and stopped going to meetings.  I don't do well with on-line programs, but that is just me.  You just have to find what is good for you.

Good luck on finding what is good for you and I will give you all the encouragement that you need.  Basically I will need the same to keep the weight off.

Sorry this is so long,

Juannelle 

MaryNY

Juanelle: thanks for all of that. You should be very proud of yourself and I can see you worked very hard to lose all you did. I go in fits and bursts of using FitDay to track my calories, but haven't used it in a while. I have a Wii and bought EA Active Sports 2 last week. Are you familiar with that one? I just tried it out once and it took me so long to set up, that I was tired already. Then I started on an exercise program and just seemed to spend too long hanging around between exercises that it was annoying. I should give it another go though, maybe there is some way to speed past those bits. In the meantime, with your encouragement, I'm going to now put in Wii Sports and just play some tennis or anything for 30 minutes.

Mary

Carrol2

It's funny that you said that about gaining weight after chemo when everything tastes good. I gained 7.2 pounds. I am lifetime on weight watchers and made goal right before chemo. But on chemo it was so easy to maintain my weight because i had thrush and had to take medicine in the form of an awful tasting mouthwash 4x a day. As soon as I got better all i wanted to do was eat.

so now i am back to tracking and exercising and hope to get rid of those pounds asap before my reconstruction surgery which should be april or may. 

MaryNY

Carrol: 7 pounds should be doable. You are very determined and have a goal in sight which should help. I lost weight while on chemo as I was simply unable to eat most foods. But I did develop bad eating habits which stayed with me. I was filling up with bread, mac n cheese (which I'd never eaten before), bananas, cheese and Haagen-Dazs ice cream. I didn't want to eat other sweet foods which I normally craved but the ice cream was so soothing. So afterward, I continued to eat the ice cream as I started to eat a wider range of foods. Unfortunately, the craving for sweet foods came back too. They are my downfall. I am now the heaviest I've ever been in my life.

Carrol2

Mary we overcame cancer we can overcome the weight. I too crave sweets like crazy. made a big mistake buying half prices valentines day candy. I also cannot have chocolate chip cookies in the house or i will eat every one until they are gone. Weight watchers works greaet for me so i am sticking with that plan.

one-L

Mary, I am all for the ice cream.  I sort of think we all go through an adjustment after chemo.  Our worlds have been turned up side down and give into temptation when it is all over.   I am a carb eater, and will always pick a carb over a protein.   If I get up  in the morning and have a cereal bar first  thing, then I can't stop eating all day.  If I start out with a protein, then I am satisfied for longer and don't snack between meals.  Same thing at night.  I do have the EA Sports,  haven't used them a lot, but didn't remember waiting between exercises.  Just skip the videos and go straight to the exercise. 

Carrol, man if I only had 7 lbs, I would be so happy.  I only have about 10 lbs to go, but it is fighting me all the way.  I am sure that I will be able to do it, it will just take awhile.  Good luck to you in your weight loss.

Juannelle 

Piffken

Hello everyone,

I haven't been on the Discussion Board in awhile. Trying to get my life back together after finishing chemo in Feb. 2010, Surgery in March and Radiation in June 2010. My hair is coming back nicely, more so than I like. I always had long hair, now it is short and so curly I don't know how to manage it. The curls are very, very tight and hard to control....

I went to my beautician to ask for advise, she said add some product and let it air dry! Yikes, not an option for me. I will get a second opinion. I don't want to add any chemicals to it to possibly have my hair straightened. It might be silly but I have not cut even a quarter of an inch. I just cannot faze the idea of losing any of my hair to anybody for any reason. I want to hang on to it for now, it seems crazy but I just don't want to give up any of it.

Perhaps another beauty shop will have some suggestions for a nice hairdo. I love how soft my hair is right now and keep thinking it is "virgin" hair. Since it came back, I have not put anything in it besides shampoo (don't even need conditioner) and feel like I will never again (at least I hope not) have an opportunity to have "brand new" hair. Anyone else feel this way or am I just a nutcase about my hair? 

one-L

Piffkin, I no longer color my hair and have decided to keep it short for awhile.  I have always had hard to manage hair and am enjoying the easy style of short hair.  I certainly understand about how you feel about not cutting your hair.  Maybe if I was younger, then I would be the same way.  I am sure you can find someone to help you manage your curls, keep in mind that there are lots of products out there now to help control the curls and most of it just washes out.

snuziq

Philippa:   My checkup schedule isn't quite as intense as yours, but my schedule is a diagnositic mamo (cancer breast only) and six months later a full mamo.   I also am having MRI's after my mamos - at least the first 2.   I see the Radation oncolgist every 4 months, for the first year and hopefully get to "graduate" from him next month.  Both my breast surgeon and my Medical Oncologist will be seeing me every 6 months for the 5 years after my cancer; after that I get to drop down to annual checks.

I wonder if the difference in follow up testing has to do with our ages and differences in types of cancer.   I know that being "younger", 40 when I was diagnosed, coupled with my triple negative status affected my treatment options.

Hugs to all!

 Suzi

micheleboots

Hello out there, where is everyone.....I miss my peeps.

JustmeAlicia

I am here !!!!!!!!!!!  Michele ~ hope you are doing well, I am sure you like me are anxiously awaiting SPRING ~

Suzi, hoping for your 'graduation' to 6 months ! 

Hope everyone quiet because they are doing great and living LIFE to the fullest.

Alicia

one-L

I am here.  I just haven't had anything to report or new to add.  Staying busy with not much that is important.

My appointments are at the end of the month, just keeping my fingers crossed for good reports.

Juannelle

txstardust

Checking in...I've been super busy lately with my final apprenticeship before I graduate in May.  This is the last week, whew!  Preschoolers can be very exhausting, let me tell you.

Follow-up appointments are coming up in the next 2 weeks.  Med onc, surgeon, and gyn onc.  Slightly anxious, but optimistic. 

I'm also getting nervous for an upcoming job interview...I REALLY want to work at this place!  Wish me luck, everyone.  It's in a couple of weeks.

Well, I have a midterm to write tonight, so I'm off to study.  Hugs to everyone!! 

one-L

Wishing you lots of good luck Shelby.  I hope it all comes together for you.

micheleboots

Shelby= LUCK

txstardust

I just wrote a long post and lost it...darn!  Anyway..

Thanks for the wishes for good luck!  This job would really be perfect.  I would be teaching at the same school where I've done my apprenticeships over the last two years.  The director of the master's program I'm in has offered to write me a great recommendation letter - he was the principal of the school before moving over to the master's program.  I'm super nervous - I haven't had a job interview in over 10 years, so I hope I don't make a fool of myself!

This week is spring break, and I really am looking forward to the time off.  I plan on wading through the piles of paperwork that have accumulated on my dining room table, and getting a start on spring cleaning.  That should keep my mind off my upcoming bone scan on Wednesday - even though I don't expect any problems, I get anxious whenever I go for a new test.

How is everyone else doing?   

micheleboots

Shelby good luck with both the bone scan and the interview.  You will rock them both..

MaryNY

Shelby: It sounds like the letter of recommendation from the former principal should really put you at the top of the list for this job.Good luck too with the bone scan. All of us can empathize with the anxiety you must be feeling. I know we all have to go through this every six months or so. Try to tell yourself that thinking or worrying about it won't change anything. I think you have a good plan in place in getting busy on the spring cleaning. 

I can understand your anxiety about the job interview as I'm in a similar (or worse) situation. I was laid off four months before my breast cancer diagnosis so I haven't worked in two years. Last week an opening came up in the company where I worked for over eight years, doing almost identical work. I feel that I have the necessary qualifications for the job, but these days the competition is intense for every job. Also I'm 55 and everything is stacked against hiring older workers. However, I'm not sure the company actually knows my age as previously I worked for them as a contractor through an agency and it was a telecommuting job so I was rarely in the ofice. I didn't use years on my resume and I know it's illegal for them to ask one's age. I do look younger than my years ... except for my post-chemo gray hair. Wondering whether to dye it now or just get it cut in a chic style. 

suz45

Hello Gals,

Check in time & needed to upload a current pic

All is still stable here except my weight... having a lot of problems still trying not to lose any more. This darn medication for bone mets is a real appetite killer. I dont feel like eating or get hungry till late at night. Ive been sooo busy again with work & such that I forget I havent eaten. but other than that Im feeling great!!

 I met with another PS and he feels that we can do just about any of the surgeries as long as I understand how the results will look and what the wait as well as down time is on all of them. Ive opted to go with a simple TE then a firmer but shaped implant. We are hoping the skin will expand with no issues (due to rads) but he thinks that we can get ok results as long as I understand they wont look great naked. Heck its just a 2 hour surgery and honestly the quicker the better. I just want a bump . If for some reason it doesnt he feels we can easily do a DL or tram with no issues, just a longer time to get a hospital bed.

Ive already got a date for the end of may but will take anything sooner if it comes up! Hoping something will...

Other than that Im back to working as much as possible and am back into Bikram Yoga. That has been incredible for me. As hard as it is I now finally have full range of motion in my arms and am soooo much more flexible as well as not in constant pain. Now that is a great feeling!

 Hope everyone is well and enjoying life. Looks like its the testing time again and I know how stressful that is. Wishing everyone speedy resuts that are all good. Gotta run as its way past bedtime.

Hugs Suz xxx

micheleboots

Suz, so good to see your face again...you look wonderful.  I hope it works out you get your surgery soon.  I know how you feel.  I am almost ready to get some new tatas..Will chat with onc next time I see her, in about a month.

Jenna1961

Mary,
I am all for dying the hair - when it comes to blending in with the age. This is such a society that we live in...
At first, after the diagnosis, I was avoiding all kind of toxic substances that surround us in everyday life (I threw away some quite expensive samples of Look Good Feel Better cosmetics).
Then, with time, I went back to some old habits - hair dying, deodorants ... I thought, after the incredible toxicity we went through with chemo, the hair dying must be really unsignificant.

Suz, so glad your surgery is not in question any more!

CAtharsis

Six months mammo today: clear!

What a nervous wreck I've been for the last couple of days! Even though the reasonable me tells me that 6 months ago everything was fine and I just got out of rads, blah blah blah.... the crazy me who now knows that sh** (unfortunately) can happen tends to get overwhelmed with fear.

Good to come back here once in a while; you are great ladies with much enthusiasm that reminds me of how strong we are.

As to the casualties, for me it is the weight... 10 lbs gained after chemo and surgery;  they are stucked there...

But the good thing is they are alive, those lbs are alive!