MARCH 2010 Rads Group

Sugar77

Marianna - I'm thinking of trying yoga myself.  I see your comment about meditation.  I'm taking a program called The Healing Journey, which is offered through a local cancer support centre.  The program is fantastic.  I'm currently in level 3 and am registered for leven 4 in September.  I started level 1 back in January when I was going through chemo.  Here's link as you might find there is something like this offered in your area:

http://www.healingjourney.ca/levels.htm

 

 

Raili

I used to go to yoga class once a week, but now I haven't been since March... I keep meaning to go back!  And I really need to get back into meditation, too.  Dr. David Servan-Schreiber, in his Anticancer book, defintely recommends yoga...as do a gazillion other sources.

I'm supposed to have a 6-month post-surgery visit with my BS in Sept, but I don't know what that entails.  e.g. I don't know if a mammogram is supposed to be a part of it... but if it is, I'm gonna say no.  I just can't say yes to MORE RADIATION a mere 4 months after the 6 weeks of daily radiation and weekly x-rays and the CT scan.  I know there are conflicting viewpoints about the risks vs. benefits of mammograms, and I know all the cancer doctors say that the radiation from mammography is very low, but radiation effects are also cumulative.  And I'm not willing to accumulate THAT much radiation over the course of my life, by having an annual mammogram starting at age THIRTY, as I was forced to thanks to the cancer.  I will submit to as many thermograms, ultrasounds, MRIs, and physical exams as the doctors want me to have... but I don't trust the mammograms.  Maybe I'll have one every couple of years, I don't know.  Right now I'm just feeling very anti-radiation of any kind.

Sugar77

Mine was found on my very first baseline screening mammograms so I welcome having an annual mammo.

MNLinda

Raili, Susan Love's Breast Book mentions that some radiation patients develop costochondritis.  There is some info at the Mayo Clinic site if you want to check on it and see if it sounds like the pain you're having - http://www.mayoclinic.com/health/costochondritis/DS00626/DSECTION=symptoms

Raili

Thanks for the info, Linda!

CTMOM1234

Mine was found from my second ever annual mammogram. Thank gosh I didn't wait 2 years or more, because not only did nothing show up on the year earlier's mammo, nothing showed upon on the mri my bs had me take shortly after that mammo/before surgery.

That routine mammo. saved my life!  MRI did not. I'm glad to have my next one this August.

YramAL

Mine was also found on my annual mammogram. I was 49 and had been having mammograms every year since I was 40. It did not show up on my previous year's mammogram, and even after I knew where my cancer was located, I could not feel a lump. 

Thank goodness for my annual mammogram. I don't regret having them every year at all.

Mary 

MariannaLaFrance

Sugar--

Thanks for the link. How lucky are you that you have something like this near you. I will research and see if there is anything like this in Texas.  It looks like a very good program.  I seek solace wherever I can, and would love a multi-tiered program with therapy, meditation, et al.

Peace to all of you. Hope you have a wonderful Thursday!

3monstmama

Just back from the oncologist.  More Tamoxifen delays.  She wants to make sure that the funky breathing is asthma and not Zap related.  So tomorrow I get another CAT scan and Monday I get a pulmonary function test [after I meet with the Zap doctor for my 1 month check-up] and the next week I meet with the pulmonary specialist and THEN I go back to the oncologist.  It was going to be a chest xray but because I was supposed to get a CAT scan to check out the spot in my lung that they found in the December CAT scan when they were trying to decide if I was a 3-fer [breast cancer, liver cancer & thyroid cancer], she decided to do both now.  She said they would get more info off the CAT scan and since I needed it anyway, why not ditch one load of zapping.

All of which sounds great except then the pulmonary doctors office called back to say I needed a chest xray before I see him.  Even the oncologist's assistant thought that was stupid since they would have so much info from the CAT scan so she said she would get the oncologist to call and straighten them out.

Okay then in other words what we are saying is that after a brief delightful [delightful other than the 2d degree boobie burns] 3 week period of No Doctors and No Appointments, the appointments and doctors are back in spades.  I am going to hold off telling my husband as best I can not because he is unsupportive but because I just don't want him to worry when he is so far away.  I know in the end it will all be nothing--allergies and plain bronchitis--so why stress him more?   Stressing him will only stress me and that I have an ample supply of already.

In the meanwhile, I am going to get back to my cushion and meditation and next Saturday I am going to a one day mom's retreat and my mother-in-law arrives to help out with kids and house tomorrow.  yippee!

I will update tomorrow--sorry for the venting but this is really my best place to vent as much of my facebook "friends" don't even know about the breast cancer and my husband has access to the blog. .  ..

Sugar77

monstmama - vent away...this is the place to do so.  We're all here to support one another.  I can relate...only a handful of my FB friends know about my cancer, too. I'm sending good vibes that all will be okay with your tests!

Sherri 

MariannaLaFrance

Sugar's right, monstmama. We have to vent somewhere. I've found that I have a hard time telling people about my diagnosis. My close friends know the ins and outs, and a bunch of people in our community found out, but I remain pretty tight lipped (and stoic!) about it in general.  So, please, vent away!  We all understand here. It's all about life, and the quality of the life we're living, really... I don't say a WORD on FB. It's way too personal for me to put out there to the entire community of people I know on that site.

YramAL

Just got back from my first post-treatment mammogram. All clear!!! Woo hoo!

Enjoying a large glass of wine.

Mary 

Raili

Congrats, Mary!!

3monstmama

great news Mary!!

silverlady

Hi all you Raddies! I was diagnosed with Triple Neg. (TN) stage 3 8/25/09.   I started my radiation therapy on April  after I had finished my Chemo and Mastectomy..  I just finished my 5th  week, 2 more to go.  My chest is a nice deep red, my Radiologist LOVES the color of it, says it means it is working.  Very itchy.  Skin starting to peel off.  The first 5 weeks, they concentrated on the drain area, and the area of the cancer.  Now, in addition, they will concentrate on the scar.  I was lucky with chemo, tolerated it extremely well according to my oncologist, didn't throw up once!!!  Rad. is OK also, consideraing the alternative.  I will do everything I can to be around when my G-kids graduate Highschool.  Of course, I have the strength of God along side of me.

YramAL

Welcome Silverlady! Glad to hear you are tolerating treatment well.

Mary 

AndreaS97057

I'm finally back home after 4 weeks of back-to-back trips!  Yippee!  And have my first post-rad checkup today.  I'm a little nervous even though I know that all the dr will do is look at my skin and tell me I'm doing great (which was pretty much all she did when I was going through rads).  Now that I'm home, I'm so worn down.. is it mental? is it just too much work? is it that cursed cottonwood that I am also allergic to (rain & long days in seattle are the perfect mix for way too much pollen in the air)? or is it long-term effects from the rads?  

And I've completely stopped exercising.. so if I tell you all that I'm going to go to a yoga class today and will try to run tomorrow will you all hold me to it?

Congrats Mary & Marianna on the all-clear exams!  And Jenn, I am hoping that your lungs have reacted to allergies since your immune system is probably a little low at this point -- this is one of the worst years for pollen.  And although I'll probably keep getting mamograms, I agree with you about too much radiation, Raili -- I have a dentist appointment next month, and there's no way I'm going to get my teeth x-rayed.  And someone mentioned having to get a new perscription for glasses.. my eyesight has gone to crap over the last few months -- maybe this is reaching a little far, but could radiation or stress impact (already slowly) aging eyesight?  Drats, I need to make yet another appointment for that. 

 - Andrea

3monstmama

Hey Andrea,

stress DEFINITELY impacts eyes--i had a really stressful time at work and my eyes tanked.  And if you have a good ey doctor, please share the name.  My eyes have definitely gotten worse in the last six months of silliness.

In other news:  I did the CAT scan on Friday and the pulmonary function test yesterday.  The CAT scan seems to show some cloudiness that may be leftover Zaps.  The nodule spot is slightly changed which means more monitoring....i am choosing to interpret that as nothing of importance.  The pulmonary function test went really well.  I am thinking the problem was asthma like last year.  Stupid cottonwoods!

Also on Monday, I did my 30 check-up with the Zap Doctor and as anticipated it took minutes.  When I told him all was well, he didn't even bother to look himself.  Okay by me, I have flashed enough people to last a while.  The best part of the visit was that I saw my very favorite Zap tech and got a big hug and an update on his garden and got to see a new photo of his newest granddaughter.  I go back again in 6 months from the end of Zaps so that would be November.

For what its worth, Zap Doctor told me that most respiratory problems post Zaps are much further down the road and many people just think its a cold.

I am pushing myself on my exercise campaign.  I road my bike to work [train! ] 2 x last week and did a bike ride with my sons on Bike sunday [we live by Lake Washington and they close the road down for a few miles so that the bikes can take over.  Its really nice]. I also biked to work today, okay well I biked to the train. . . .Oh and this weekend, I checked out the closest bus stop on the road by the Lake.  I am too out of shape [trans: lazy] to deal with hills but I can bike to the bus stop which is 4 miles away, take the bus over the hill and then do it in reverse--thats 8 miles, right?  Thats something right, even if its flat?

And otherwise, my daughter is the proud owner of a broken arm.  Her school does circus stuff like ball walking, unicycle, juggling and the like as part of their PE program.  If you are really good, you get to be on a special team that performs places. Well this weekend she had her first performance and she did great.  Only problem was that after her part of the performance, she and her brother were still standing on their balls and she fell off and attempted to stop herself by putting out her arm.  Whoops.  When it didn't get better after 2 days, we took her to the doctor, she got an xray and its a compression fracture.  Nothing out of place, no bruising, just swelling.  She has a splint for 4-6 weeks. 

The thing is, it was nice to go to a doctor for such a normal thing.  Its been a while.  Suspect you all know what I mean.

have a great week!

June2268

Hello ladies hope all is well with everyone!  Summer is upon us and I am hoping it is going to be a great one for all of us as we all deserve it!

I had my mammo and after many stressful callbacks to do more films, supposedly I am all clear I don't feel the HIGH yet!  Will I?  I expected to go outta there so extremely happy and celebrate being "cancer free" but I am not sure if it was all the tension they created as they told me there was an area of concern but they believe it is from the many surgeries I had.  I think if they told me all was clear on the 1st time I might be happier.  Has anyone else felt like this?  After radiation was done I was on cloud nine forever and could not get the smile off my face.  Is it going to be like this every 6 months or every time I go in for these damn mammos.....I have been trying so hard to resume to normalcy as I tend to be a stress eater and I really need to get myself under control.  I have lost 9 lbs so far and I don't want to blow it with being stressed out again and worrying about every little thing!  Just hope that my feeling are normal and I just wanted to share my so called happy news with you lovely ladies.......well I hope you are all well and look forward to keeping in touch, take care June.

fan2544

HI All,

Hope this warm weather finds everyone in a good place or at least getting there. Congrats to all who are done or who have had an "all clear" or just to you who are making your way through this journey. I have been a little absent from here but happy to add that my 6 month post surgery mammogram was given an all clear also. Thinking of you all.

Sugar77

Fan - great news!  I hope your move is going smoothly.

Sherri 

ve1787

Hi all,  I just finished up my radiation treatments today!  What a great feeling!!

I go back to the radiation Dr. in a month.

Wishing you all the very very best.

MarieK

Hi All!

I saw my rad onc yesterday for a check up.  All is good with the radiated skin - he said I am lightly tanned and healing very well.  He mentioned that I have some excess fluid but that will eventually go away.  He said he could see the marks/indentation from my prosthesis and where the fluid is being pushed to the sides.  Nothing to worry about though.

He is very knowledgeable (works out of the Cancer Agency) and so I talked to him about my upcoming ooph.  He agreed that it might be unnecessary if my ovaries are not functioning and since I am already on Tamoxifen I should discuss this with my Ob/gyn when I have my pre-surgical appt on June 22.

I asked him what I could do to help make my decision and he said I needed to have blood work.  So he ordered some and I went this morning.  The lab is sending me the results as well as my OB/Gyn and Med Onc.

He told me that there is a study going on now where women who have been dx with BC and have an ooph within a year are being followed and compared to those that don't have the ooph to see if there is any benefit. But the results will not be in for 10 years.

He did tell me that most women who are PR + regardless of pre- or post-menopause are being prescribed Tamoxifen now.  And that if I had my ooph chances are I would end up back on Tamoxifen.

I know that this is a Radiation thread but I thought I would post this info here because if you are seeing your rad onc for a follow up and you have questions don't hesitate to ask him for his opinion/view point.

Happy healing to all!

Marie

Raili

Congrats on finishing, Ve!

Thanks for all the info, Marie!  My check-up with the rad onc is in a week.  I'm impatient for it, because I want reassurance from him that the swelling I'm still experiencing is normal!  Anyone else still have swelling?  My left (previously-cancerous breast) was smaller than my right one before treatment, but ever since the lumpectomy/2 reexcisions/6 weeks of radiation, it's been BIGGER than the right one.  It seems strange that a breast that had tissue removed from it 3 times is actually BIGGER than it used to be.  Someone else suggested I may have breast lymphedema, and I'm trying not to worry too much about that.  Problem is, I have no basis for comparison - IS it normal to still have swelling 5 weeks after radiation ended?  Also, I don't know what normal, radiation-induced swelling looks like in comparison with breast lymphedema.  I did a Google image search for "breast lymphedema" and most of the search results were actually photos of breast elephantiasis, which was so not helpful.  (And there were even more photos of elephantiasis of male body parts I DID NOT WANT TO SEE!!!) 

3monstmama

hi Zap Sisters!

got blood work results back from oncologist and it would appear that I am post-menopausal.  News to me!  I wouldn't have noticed because i had this mega hysterectomy 5 years back so no particular signs of decline.  Anyrate, the question being are any of you in the same place and are you still doing tamox or were you given something else?

My appointment with the oncologist isn't until next wednesday and I hate the mystery!  I suppose I could call but I don't feel that I have an urgent enough question.

Other than that, my husband comes home July 6 and it looks like he won't need to leave again as his friend is being transferred to Sweden for the rest of the chemotherapy  Yipppeee!  Five weeks gone is a long time.

Raili:  I've seen those photos before--yeeeeeggggggggggghhhhh Its actually one of the few diseases that I find scary to think about.  So much for me being a jungle explorer in my next life, hmmm?

Other than that, hope all are well and getting on with their summer festivities. 

jenn

Sugar77

Jenn - I'm not on Tamoxifen because I'm triple negative.  However, since I've not had a period since my second round of chemo in January, I had my doctor check my estogen levels.  Turns out my estrogen was 190, which is not quite menopause but much, much lower than what a women who isn't in memopause would have (it fluctuates throughout a woman's cycle but would be around 600 normally).

Sherri 

MarieK

I had my blood levels checked as well and I'm < 100

Post Menopausal levels are up to 220 - mid range for a woman going through regular cycles would be 550-845

I too am post menopausal and haven't had a period since Oct

I cancelled my OOPH since 2 drs have now told me that the risk outweighs the benefit - actually for me there would be no benefit.

Rali - I too have swelling but my rad onc told me that it is fluid retention from radiation  Mine is pushed out to the sides from my prothesis but he did say that eventually it should go away.  He suggested that I take a break from wearing my prothesis a bit longer - couldn't wear it at all during radiation - I'm not ok with that so I take it off when I'm at home to give myself a break

I really didn't notice it until he pointed it out - it was good to have him check it out.

You should mention your swelling at your next drs visit.

MarieK

Now that I think about it - I'm not sure if the rad onc actually said fluid or swelling still from radiation.  To me it feels like tender jiggly bits!

Sorry for the confusion - but I'd still recommend having it checked out for peace of mind!

schipmom

It's hard to believe, but I am already 6 weeks out of rads.  Sick boobie is still darker and bigger than usual, but it is getting smaller and returning to normal color slowly.  But the nipple is...err...still standing at attention most of the time!  It seems like every time I look at it, it's looking back at me   Sorry for the TMI - just wondering if anyone else is  noticing this also with theirs? 

I hope everyone is doing well and healing nicely 

3monstmama

Hi all,

A cautionary tale:  In mid May, I had some sort of sleeping sickness plague with a nice hacking cough and eventually asthma symptoms.  I thought it was just me and the joys of spring time but I did tell my oncologist at my appointment for the tamoxifen train.  Well my onc being a precise and picky sort, she refused to start Tamox but rather sent me for a CAT scan and for a pulmonary function test and for a consult with a pulmonary specialist. HTG all this radiation, I shall be glowing in the dark soon, no need for a flashlight when going to the bathroom on a camping trip, just bring mama with you!

Anyrate, I passed my function test with flying colors BUT per the pulmonary specialist, I am showing signs of radiation pneumonitis where I was zapped.  He believes that it is getting better on its own as there are no signs of asthma now and the coughing is gone [though I am winded easily which he says is one of the signs]  so there is no need to start steroids or anything else but I still can't start next round of treatment and I will need Yet Another Stupid CAT Scan in July to make sure its gone.

Sigh.  I have to wonder if part of the problem was pushing myself to recover my title of "SuperWoman" before I was really ready.  I thought I felt so good--I mean after that 1st week or so BadBoobie was looking so good that  I stopped worrying about how much sleep I was getting or how much water I was drinking or how much stress I was dealing with and declared victory on my cancer.

Anyrate, I am scaling back the demands on myself though it is really hard and I feel like such a bad team player at work.  We have a big deadline coming up and here I am goofing off again.  With all respect to those who have been tormented by chemo, as a cancer patient with no outward signs of my cancer, it  can be really hard sometimes. You can tell when co-workers and all are not remembering you are sick but just thinking you are a slacker--hey how come she misses every deadline, she doesn't look like she's sick.

At home it is easier because my mother in law is there to pick up my slack and to remind me to slow down and with my husband away, the monsters are very good at trying to get me to go to bed early and hug them even if I am thinking I ought to do "one more thing" each night.

Okay enough whining, hope no one else has this issue. FYI, Warning signs are coughing when exerting, difficulty in breathing, and can't remember the rest.

Happy almost weekend.....