Class of 2009 - Sisters in the same time frame
Comments
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Nene... Is that you in your picture? If yes, how far do you run? And are you running at all now? I am trying to keep up my exercise; walk two miles and ride my bike 2 miles each AM. I had a torn miniscus just before my cancer DX which, of course, took priority. But I was intent on being able to exercise when I started Arimidex so had arthroscopic knee surgery in the middle of my radiation course. It all worked out but not the best timing.
Pam
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Nancy Holy Cow girl- you had a rough ride. Well my kid was bald for a long time
Babies aren't caught up in hair and all that... they just know who loves them, and you do! Man, I am really wishing you would go for a second opinion. And now I am wishing you the best news at the hospital- damn!Yasmin I am praying for your low Oncotype DX score
all- yes, there is the "forever" part and boy it feels like I'm from another planet when my non-cancer friends start talking about it being over... but... 4 years ago they didn't even have the Oncotype DX test... so there is hope that 4 years from now... someday soon... maybe... it will be over.
kim- YAAAAAAAY for the clean scans!!!
Kim and all- you GOTTA watch this video of Melissa Etheridge at the Grammys... she had just wrapped up her chemo: http://www.youtube.com/watch?v=R_j3TDhc8vY
don (and all) - did you see the Viva Las TaTas thread? I bunch of gals from the Recon forums are planning trip to Vegas and they are a HOOT! (ALL are invited regardless of MX or non MX or DX or whatever. Trip is SOON so check it out... here's the link: http://community.breastcancer.org/forum/44/topic/730818?page=43#idx_1281
Stage II gals, I call your Stage the Melissa Etheridge version
DCIS is Marianne Faithfull
Drat- where's my list...
I didn't do chemo thanks to Oncotype 17 :::whew::: but I had a rough time with RADs. Anyone needing help with RADS lemme know... I learned a thing or two.
I will start Tamoxifen in late September, hoping to have the hot flashes in the winter...
Hugs all
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Hello 2009'ers. Sorry that we're all here, but glad to have each other. I was diagnosed 7/7/09. I am 39 years old, married, 5 kids. IDC 1.7 cm right breast, no positive nodes, but lymphovascular invasion was present. I had bilateral mastectomy on July 22 (left side prophylactic) - drain tubes still in. I did not do any type of reconstuction at time of mastectomy, but plan to - just could not deal with that part of it at the time.
My original biopsy report had high ki-67 proliferation rate, but I've ordered the oncogene-dx test before deciding for sure on chemo. I am tentatively scheduled for 4 rounds of TC to begin August 13.
I'm still very heavily in the information gathering process. We have such short time frames for decision making!
Shay
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Hi ShayT,
My tumor showed lymphovascular invasion also. When I was told that I did not know what it meant at first. Now I understand better the full import of it. Scares the bejebbiees out of me since no one wants me to have chemo. Even my "intermediate" onco score did not suggest chemo would be of much benefit. Perhaps my advanced age (62!) makes chemo more risky and recurrence less likely. I hope... I don't like to feel like I am not doing everything possible.
Wishing you the best news about your oncotype!
Pam
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Hi all 2009 ers! PJ that is me in the pic and I am actually walking in the 5k Race for the Cure because it was two weeks out from my last chemo and extemely hot. My turnaround time from feeling the lump to chemo was a month so I did not really get to exercise much with work and the constant tests I was having. When I started my chemo it was dose dense and I tried to work after the first few and eventually had to take a leave because I only had a few good days before I had chemo again so I was not exercising much then either. I had starting walking every night after I recovered from my last chemo and I paid my membership to the gym for the year and went swimming a few times and then it was time for my bilateral mastectomy. I am a little over a month from that now and just started Tamoxifen and I am finally hoping to be able to get an exercise schedule going. I have read other ladies stories of running or going to the gym right after a chemo session and I gotta tell you that was not me. I went home and went to bed and stayed there for a few days! The 5k walk let me know that I could still do it, though, and I felt great after so I am definitely getting back to the gym. For those that did run the 5k the fastest survivor did it in 16 minutes so maybe next year.......
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Good Morning Ladies
Nancy - please keep us posted on how you are doing. (((Hugs)))) to you. We are all here for each other.
So, I have one rad treatment left. YAHOO! Tuesday is the last day (Monday is a holiday here in Canada) Rads were soooooooooo much easier to handle than chemo. The only SE I have from rads is that today I'm a little tired. Can't get out of my own way, but that is to be expected.
Pam - you're right - I just been down this road that so many are just beginning. So, if anyone has any chemo or rad questions about what I experienced, go ahead and ask. Halifax is a nice city - it is very warm here now. We vacationed in Orlando last year at Disney and had the time of our lives. If all goes well, we will be going back there in 2010.
I've been keeping myself busy. I am off work right now and have been since January. The break is nice - no stress. How many of you are still working.
As I said I'm keeping myself busy. I am organizing a fundraiser for BC called "Dance for the Cure". The band that I have hired, and the space that I have rented have so graciously donated their time for this event. I'm hoping to raise a lot of money. all proceeds will go back to the Canadian Breast Cancer Foundation so I'm hoping to get a big crowd. If any of you are close to Halifax, Nova Scotia, please come - would love to meet you!
Have a great weekend ladies.
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Well girls, I hope you will allow me to join the class of 2009, even though my dx and surgery was in november of 2008. I had a lumpectomy and axillary nodes (2 positve) , chemo (which just about killed me) rads and now am starting arimidex. Rougjh on the joints and fingers. I was an absolute mess over the winter and got very depressed. I got alot of support from the boards this time. I can totally empathize with you guys, I felt I would never get thruough it, but here I am, feeling stronger every day. So I offer my support and encouragement to all, let's agree not to judge ourselves and whiners, because in my view all our experiences and feelings are what they are and need not be judged by ourselves or others. Iknow I find this a safe place to share feelings, even when they are sad or angry ones, and I don't want to burden my family. Love and support to all!
Ellen
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Correction "judge ourseleves AS whiners
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Hi all, I'm new here, was diagnosed with IDC on 5/5, had a mastectomy of the left breast with tissue expander reconstruction on 6/5 and started chemo on 7/1. My official stage was 2A (T1, N1, M0) although I'm not sure of the grade (no clue what that even means?). I'm doing TAC, I'm done with 2 treatments. I'm ER+ and the other two were negative although I'm still not exactly sure what that means either (a little clueless over here???). The pathology after surgery showed that the tumor was 1.8 centimeters (much smaller than what the MRI had predicted - they had said 4.4) and 4 of 19 lymph nodes were affected.
I'm 32 years old and I have a 2 year old son. I was hoping to start trying for another baby before the end of the year and instead now I'm just hoping I will get to see my little boy grow up. It's been a rough road so far to stay the least but I'm trying to remain optimistic.
I'm looking forward to getting to know you all.
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Could you ladies tell me more about the Oncotype DX? I see my oncologist for the first time the coming Tuesday.
I had a uni mx (right) DIEP recon 7/10/09. I had 7 tumors in the mx breast. 3 IDC, 1 LCIS, 3 DCIS. All small, largest was DCIS 7mm, IDC 0.4 cm. The others discovered in the mx pathology were all 1.5mm or smaller.
I have no node involvement which I thought meant no chemo. Now in my research I'm seeing that sometimes there is chemo with no node involvement. Is the Oncotype DX standard test when consulting with the oncologist?
Oh, and I'm 41, premeno.
Thanks for any light you can shed on this.
Jude
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Hi jpernot,
I don't know why DRs don't mention the oncotype test. My surgeon did not but when I asked about it he immediately agreed to order it. It is done by Genomic Health. They have a great web site at www.oncotypeDX.com to explain all about it. A portion of your tumor is sent to them and they analyze it to create a tumor profile. "Oncotype DX Breast Cancer Assay uses RT-PCR to determine the expression of a panel of 21 genes in tumor tissue. The Recurrence Score is calculated from the gene expression results." The study includes only Stage I or II, Node Negative, ER-Positive patients.
In other words, it is kind of a crystal ball to predict the likelihood of recurrence for a certain set of breast cancer patients. My words!
It is Very expensive, like $3700.00. I think it is only available to pts in the US. Many insurances pay for it, mine did. Also, the company is eager to increase their data pool and if you have an income below a certain level they will do it for free and pre-qualify you. You can call them at 866-662-6897.
My report came back with an intermediate risk of recurrence (not the best news) but affirmed my doctor's opinion that I would not benefit from chemo. So their objective opinion made me more comfortable foregoing chemotherapy. I have read of instances where, in spite of the oncotype saying the pt was at low risk, the pt wanted chemo and their insurance company (which had paid for the oncotype test) refused to pay for chemotherapy as it was said to be not warranted by the test. That would be unusual, I think. And maybe just a rumor.... I don't know if it is true or not.
Mostly I think the test confirms or validates what your doctor has already planned. But it seems more and more pts are talking about waiting for their oncotype to come back before their treatment plan is set in stone.
I could not have paid for it out of pocket but was sure glad my insurance approved it. BTW, Genomic Heealth did all the negotiating and paper work with my insurance so that way easy.
Pam
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Hi Lauren3,
My heart goes out to you and all the young mothers who are battling this demon. I remember worrying about being there to take care of my children when they were babies and it was just paranoia... not breast cancer... that kept me awake at night.
But you are young and strong and the Drs are going to throw everything at you to see that you live a long and (post treatment) healthy life. There are so many tools in their armamentarium now and the treatments are so successful now. And you have found this site to educate you and listen to you and hold you up when you are down. We are with you.
It's amazing how fast everything to do with our cancer happens and at first it is just a blur. You are not clueless at all... you just have not had a chance to catch your breath. A two-year old probably keeps you a little busy too!
About grade: you can find the info on your pathology papers. Here's a description I copied:
Breast cancer gradeA pathologist also assigns a grade to the cancer, which is based on how closely the biopsy sample resembles normal breast tissue. The grade helps predict a woman's prognosis. In general, a lower grade number indicates a slower-growing cancer that is less likely to spread, while a higher number indicates a faster-growing cancer that is more likely to spread.Histologic tumor grade (sometimes called the Bloom-Richardson grade, Scarff-Bloom-Richardson grade, or Elston-Ellis grade) is based on the arrangement of the cells in relation to each other: whether they form tubules; how closely they resemble normal breast cells (nuclear grade); and how many of the cancer cells are in the process of dividing (mitotic count). This system of grading is used for invasive cancers but not for in situ cancers.Grade 1 (well differentiated) cancers have relatively normal-looking cells that do not appear to be growing rapidly and are arranged in small tubules.Grade 2 (moderately differentiated) cancers have features between grades 1 and 3.Grade 3 (poorly differentiated) cancers, the highest grade, lack normal features and tend to grow and spread more aggressively.The tumor grade is most important in patients who have small tumors and no lymph node involvement. Patients with small, well-differentiated tumors may require no further treatment after the tumor is removed, while patients with moderately or poorly differentiated tumors usually receive additional hormonal or chemotherapy.Ductal carcinoma in situ (DCIS) is sometimes given a nuclear grade, which describes how abnormal the cancer cells appear. The presence or absence of necrosis (areas of dead or degenerating cancer cells), which might indicate a more aggressive cancer, is also noted. Other factors important in determining the prognosis for DCIS include the surgical margin (how close the cancer is to the edge of the specimen) and the size (amount of breast tissue affected by DCIS). In situ cancers with high nuclear grade, necrosis, cancer at or near the edge of the sample, or large areas of DCIS are more likely to come back after treatment.Pam0 -
HI Ellen,
Since you are getting close to one year PD (post-diagnosis) can you tell me.... Have you had a mammogram since before your lumpectomy? I just am wondering if that is done more frequently after a BC diagnosis or is is still once a year? Who do you see for follow up and how often? And what routine things to they do? Thanks!
Pam
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Pam, What a great idea to have a topic spot where we are in the same boat at the same time. I guess you can put me into your "old" group...I am 57. But, I don't think we are THAT old!
I feel as if I was in a whirlwind during the month of July. Felt lump in left breast on June 28.Diagnosed on June 29. Bilateral MRI on June 30. Lumpectomy on July 2.Surgeon did not expect to see anything in sentinal nodes but there was a tiny spot in one small node which resulted in axillary dissection where nothing was found. Overnight stay in the hospital. Next morning had an abdominal CT scan and a bone scan. Both were clear of any problems! Discharged.
Got the drain on out July 6. Saw medical oncologist on the 14th. Oncotype DX test ordered. Saw surgeon for follow-up on the 20th. MO called on July 24th. Oncotype DX score: 18. Appt w/ MO on July 28. Decision made to not have chemo. Got Rx for Arimidex. Appt with radiation oncologist tomorrw, Aug 3.
I know that I am "lucky" in that I do not have to go through chemo. My heart breaks when I read the stories of those who have gone through chemo. I know that I am "lucky" to have found this cancer early. I know that I am "lucky" that my prognosis is excellent.
But, if I may whine for a moment...I just don't feel so darn "lucky". I am also one of those who took care of everyone else and never needed help. This just shakes the foundation. The outpouring of love and care from friends and loved ones has been overwhelming and very humbling. I have always been on the giving end...not the receiving end. I figure there must be a reason for me to go through this ordeal. I keep telling myself, it could be worse. But, I still have little pity parties...which makes me so mad at myself! My surgeon told me that this was going to be 10% physical and 90% mental. Whoa! He was right! Okay...end of whining.
I would love to hear all of your tips on going through the radiation treatments. I find that the more I know of a procedure makes it easier for me!
Hugs to you all!
Sue
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Hi SueinOhio!
Good to meet you! All you guys are the only people who understand what we are going through!
I know what you mean about feeling lucky and unlucky at the same time. What a mixture of emotions this whole experience creates. I am normally a very calm person but I now have this underlying anxiety that pervades every moment, waking or asleep. The day I got my breast cancer diagnosis I developed a hand tremor that my doctors all say is purely anxiety and it will diminish as I settle down. But I don't know if I will ever settle.
My radiation facility was up to date and only 6 miles from home. Some women have to drive a long way for treatment in heavy traffic. I was fearful of lung or heart damage but had the image guided treatment that is safer. I loved all my radiation therapists but found the process stressful. I had to give up "control," go with the flow, and accept the unexpected. It seems that the equipment is very fussy so there were days the equipment was "down" and treatment was delayed or once or twice, cancelled. Some days it did take only 30 minutes, never 15 or 20 as people say. Often it took much longer and those were not good days. It never made me sick and I had only minimal fatigue but I indulged in naps a lot. I didn't develop much skin reaction until day 25 or 26 when my folds blistered and split... but as fast as it came on, it healed up and apparently radiation burns do not scar. I am almost 2 months post rads and my skin is pretty normal, not totally but getting there. I would have complained a lot more if you had asked even a month ago.
Oh... it was freezing cold! I Live in hot Florida but dressed, from the waist down, like it was Alaska... I took double socks even. Can't do much for the top half 
Everyone talks about the tattoos. They are so tiny as to be nonexistent in my case. The good thing? My underarm is still as smooth and hairless as a baby's bottom... don't know if the hair will grow back or not. It seemed like it would never end but it did. And I am glad, now, that I did it... You'll do great!
Pam
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Hi Ivorymom,
I went straight to Arimidex but I have read that 2 yrs of Tamoxifen and 3 yrs of an AI is ideal. Don't know why. In your case, waiting to have an oophorectomy gives your body some time to recover from everything else too. Sounds like you have a good plan going. Plus Tamoxifen is so much less expensive.
Some facilities, like Mayo, have comprehensive breast cancer clinics. I think you get a lot more counseling there and that can not be a bad thing. For most of us the first line of attack is through surgeons and I don't think they are the most empathetic in the medical profession. :) If my surgeon had used the term "survival rate" one more time, I think one of us might not have survived! Thank goodness for this site and all the love and support it provides. And information!
Pam
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Pam,
I agree with you...I am not sure why some breast surgeons don't suggest the Oncotype DX test. I wish my BS would have ordered it as soon as he found out that I had IDC and not just DCIS. It has been 6 weeks since my BMX. It would have been nice to go to my first Oncologist appt. knowing what my score is. Now I have been waiting almost 2 weeks for the results of this test so my oncologist and I can finalize my treatment plan. The waiting stinks.
Yasmin
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The waiting is the worst!!! You are right, Yasmin.
Pam
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Hi, I'm in the class of 2009. I Was diagnosed in June, after removing what I thought was a Fibroidandinoma. When I went back to my surgen for a post op visit, he informed me that I had breast cancer. My husband and I were in shock, because we were told it was not cancer. I am so glad that I had the surgery to remove the lump, If I had left the lump there I would now be, I am sure in a much worst case. I had to have a second surgery to get clean margins and check out the lymph nodes. I had 2 nodes removed, my under arm and arm pit hurt and was numb for several weeks after. I now feel really good and am waiting to have chemo in 2 weeks. I hope every thing goes well. This web site has been great for me, I have learned so much and have been inspired. Thank you all
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Pam,
Just had a mammo on thursday (first one since lumpectomy)and will be a week for results. I am putting it out of mind. I am not sure but I think it will be every three months. And to all who are having a rough time, I was so depressed and thought I would never get out of it, and now I am better. Sisters!
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Hello ladies!
Well, I had the radiation consult and the simulation today. The doc is a tad too serious for me...but everyone else is wonderful! Maybe he will loosen up when we get to know each other.
Pam, like you, I don't live far from my radiation facility either..I can get there in under 10 minutes...Since I live in Columbus, we have some excellent breast cancer facilities. Mine is right next to a big hospital! I chose my appts to be at 7:24 in the morning. I can either go on to work...or go home if the fatigue gets to me! So glad you mentioned wearing socks...I was glad to have worn them...plus they put a warm blanket on me between calculations! (Told you they were wonderful!)
I read somewhere that you should take a mild painkiller before simulation...just to help you relax. I wish I had done so. It does not matter what medications you are taking for the simulation. A mild painkiller would have been nice to help me relax. Quick note...the only pain is the tattoo "bites"..and I would not consider that pain. I think laying on that hard board for so long without moving was worse! I go back on Thursday for the recheck...then Friday is #1. I hope you all are here when I finish #33!!!
Hugs to all,
Sue
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Hi Y'all,
Yes, North Florida is still part of the South.
So glad your simulation went smoothly. Sue. My therapists were very nice too until they started the procedure... then they were all business. Did not even talk to each other except to give directions or call out numbers. No small talk. It might have been my imagination but a couple times I felt like I had a residue of lotion on my to-be-treated skin and there was a sweet burnt odor when I was zapped. After that I made sure the skin was bare of anything.
I seriously thought about asking for a mild sedative to take prior to treatment. I was so tense that between the cold and being nervous I would shake like a leaf. It helped me to hold something in my hands that I could squeeze... I settled on a fat hair curler
One day I forgot it and I was a mess without it. My security blanket. My best days were right after my knee surgery when I was taking darvocet post op... very mellow on the table... so you are on to something.About one day out of 4 or 5 things would not go smoothly. I never understood what added to the procedure but it seemed as if the preliminary "pictures" would not be acceptable and things would have to be repeated over and over... not the radiation, just the preparation. Those were my bad days. There was one long day before the boost began... almost like another simulation and no treatment that day. I had marked my calendar for when it would be over so with two days cancelled, one holiday and the pre-boost work I was off my almost a week. Good thing I was not planning a cruise to celebrate!
My treated breast now seems not too worse for the ordeal. Almost all of the discoloration is gone, except in my armpit which is still darker. My nipple got pretty weird looking and it is now back to normal. Apparently the radiation did not affect the size... just made the treated breast perkier than the other untreated side. But only minimally apparent in a nightgown and not at all with a bra on. I know it is shallow to think about things like that when you have breast cancer but can't help it. "Vanity, thy name is woman" or something like that. Things should go smoothly with an early AM appt time... the later in the day I went, the longer I had to wait. I wanted early but it was not until my last week that an early time slot opened up. So sad... so many patients.
Did I mention warmth? My husband STILL says he can feel heat from my treated side when he hugs me... through clothes! I think I am used to it so don't notice it myself unless thinking about it. Just a little radioactive glow I guess.
Keep in touch.
Pam
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HI Ann64,
Thanks for joining us.
All you chemo women are so brave and strong! I don't envy you but sure do admire you.
I'd say your guardian angel was looking after you when you decided to have the fibroidadenoma removed. Was your husband with you when you got your news? You were really blind sided. Most of us have had a pretty good clue what was coming so it is not such a shock. I don't understand why Drs don't want to tell us the bad news over the phone. I would rather hear bad stuff in privacy. My PCP is good to tell me things right away on the phone but my surgeon wants you to come in on appt. All the while you know bad news is coming, you just don't know what it is.
Please keep us in your thoughts and we will you.
Pam
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Hello Nancy,
Thinking of you and hoping you got to see your grandbaby over the weekend. What has happened?
Pam
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Hi All,
This weekend I really found it difficult to accept that I am finished treatment except for Tamox. I cried so much!!! I feel like I am cast adrift and no safety line. I know I should be dancing for joy but I feel uneasy. Is it because when going through surgery, chemo and rads I had to put my trust in others to look after me and now I'm back to being responsible for myself and I'm scared that it will all go wrong - did any of you experience this and how did you manage it??
Take Care.
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Hi Aimn,
When ever I read a post from you the words have a lovely Irish lilt to them. Please don't tell me you are not really from Ireland!
I've read lots of women saying the same thing... hard to let go of the biggies: surgery, chemo or radiation. They are so tangible and dramatic. And we have all these caring people around us, poking and stroking and making a big deal of every little nuance. Now, all of a sudden, here we are, standing in a bathroom brushing our teeth and popping a pill half the size of an aspirin, all alone. Seems pretty anti-climactic.
On the other hand....
Whether it is tamoxifen or an aromatase inhibitor, this is a drug that has been years in coming and cost a fortune in research and development. Both are potent drugs with potentially serious side effects. Personally I was more afraid of Arimidex than of radiaition and what it would do to my body and quality of life.
So every time I take a pill (at a cost of $10.00 each!) I feel like I am really doing something important. I have never been a good medicine taker... very cavalier about birth control pills (but no accidents
) , totally inconsistent with premarin, on and off with vitamins... but I can't wait to take my anti-cancer pill every morning! Wish I was taking it twice a day as it makes me feel so proactive and in control. Maybe I am just rationalizing... making myself feel better about putting all my trust in hormonal therapy since I did not do chemo. But the mindset is working for me for now. Hope it does not let me down.
A big hug from North Florida. We are all here for each other with virtual shoulders to cry on.
Pam
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Hi kim40
Was today your last Rads day? Congratulations... you made it through. And just what are you going to do with all that free time you have now?
When do you check back for follow up? Hope you have a little celebration planned!
Pam
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pj - I feel the same way you do about putting all your trust in a little pill. Your thinking works for me!! It won't let us down!
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Pam, thank you for your support and I really am from Ireland. A rural little village in a Gaelic speaking area - as Irish as you can get!!! When I was diagnosed I was told immediately that I was facing surgery, chemo & radiation. Then about ten days after surgery my oncologist said that when I finished all that I would be going on tamoxifen - I immediately queried that and he was quite surprised - he said - I've just told you that we are going to bombard your body with toxic chemicals and then subject you to high dosages of radiation and you query taking a pill? He said that if he was told he could only offer me chemo or rads of tamox he would go with the tamox as he felt that the benefit it offered was the most tried and tested. Thus ended my queries!!! Well to be honest I think why I queried it was I had been pre-prepared for the surgery, chemo and rads and then he just 'surprised' me with one more thing. So I guess his answer was pretty potent. I now refer to tamox as my 'quality of life' tablet!! As for the contraceptive pill I wonder how much that figured in my present predicament - hmmm???
Well oíche mhaith (good night) agus colladh sámh (and sleep well)!!
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So here I am ..49 years old 50 in about 3 weeks Class of 2009 !I have posted my story and journey but thought this would be good therapy to get it all out as I await final path...
Hnpcc gene positive,uterine adenocarcinoma Feb 08
Mother & Sister both HNPCC pos and also mutliple cancer survivors.
Journey started june 15th and ended July 31st with double mx ,left modified radical, right proph alactic.
I have to say I am recovering nicely from surgery...much better than my uterine .
I head back in 2 days to see surgeon but final path could take 2 weeks maybe..
Pretty sure chemo will be in order...1st in the family LUCKY me !!probably rads as well but do not have any details.
much love
Cheryl
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