Class of 2009 - Sisters in the same time frame
Comments
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Magob, good luck with rads...I wish I was finishing up that as well...cn't wait for that finish line. It is hard to believe all this started almost a year ago...time flies, yet can go so slow..
JOJO, you are welcome where ever you go...
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Hiya Jojo -- welcome!
Lilah
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Welcome JoJo!
Wishing everyone a great restful weekend!
Hugs
Jen
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Yeeee haaaawwww Michaelboots, Chemo is over must feel go to be one step closer. thanks, for all the PICC information. great new pic
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Welcome JoJo!!!
Jen- what a great picture, I to think you look awesome!!
Michelle - Congrats a million times over on finishing chemo!!!!!
Mary - Congrats on finishing up rads!!!!
Juanelle - glad to hear that rads is going well... bahabahabahahahaha!!! On looking like Uncle Fester with a light bulb. You are such a hoot!!! And a very beautiful lady. You too Alicia!!! Missing eyebrows and all. :=)
Honeybee - good luck with Chemo.
Me - they gave me something called Mepiplex, it's a foam self adhering, absorbent material that sticks to the underneath side of my breast and keeps skin off skin. It is a little better, definitely not as painful. They are only doing the boost which is called ionization and it is to the nipple, areola area where my scar is. Not as bad as other rads and I'm using the silvadene cream. My armpit is healed and almost peeled completely off and looks like it will be a little tanned but not black and dark anymore. Yah!!! After today I only have 3 to go!!!! I finish on Weds next week.
Oh yeah, almost forgot... we are having a winter storm warning, rain, sleet and ice. What fun!!!!!!
Renee
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HEY thanks guys for the warm welcome .
PJ12345
Thanks for sharing your brownies and cookies with me ,Ive got a few more days till my last chemo, don't worry ill be letting everyone know when Ive finished lol then on to rads I'm kinda thinking that it want be half as bad as chemo and ill be able to return to my part time job .
jojo
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Hey girls JOJO is being shy ~ it is PRINCESS JOJO and she has a magic wand!
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LOL Alicia!!! That is too funny!
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As much as I moaned and groaned about rads, I agree... for most people it is way easier than chemo. I guess, as some folks on BC.com have said, the worst thing you know is the worst thing that has happened to you. Wishing you an easy time with it, JoJo. And could you wave that wand around and chase away all bad vibes for us?
pam
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Hi Girls! Great info on the "Hair, hair, hair" thread. Sugar, thanks for telling me about it. Good eyebrow tips. And when it's time to start taming those curls, there is all kinds of advice. Also, if you need to get rid of some unwanted hair, like some of us are surprised to see, there is good info on that, too.
Renee - Mepiplex, huh? Never heard of it. Sounds like it's helping. Wednesday will be here soon, sister. Sendings lots of love your way.
JoJo - nice to have you with us. Welcome!
Juanelle - Rads will be over before you know it. You're almost there!
And to all a good night. XO, Mary
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Mary - Awww Thanks a Million for the Love!!! I'm counting those days down sister you can bet on that! And then the couple of weeks after that till the sore boobie heals completely. I try to air it but it's hard to walk around the house with no top on when there is always someone here but yourself. I am a little uncomfortable with that, so I stick to loose tanks and over sized t-shirts. I try to air out at night in the privacy of bed. lol
Renee
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HI there all
Weeeeell ok ,yes as ALICIA wrote yes i was being a bit shy, I'm commonly known to the OCT girls as PRINCESS JO JO and yep i have a magic wand that i get out only in desperate times, and on my Chemo days in known as JOJO JUST my wand has helped many of us through those bad times so if any one needs a special favor i will be more that happy to get it out .
Hope all is well and having a great weekend
4 MORE SLEEPS TILL ILL BE JOJO JUST
But for now keep well
PRINCESS JOJO
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Hola Hermanas,
I just went 2 inches shorter with my hair as seen in pic. And, I have decided to shave my head next Saturday because I want to have some control over what happens to me. It has been a long 6 months with no control and this is going to be My CHOICE!
MAGOB- Hey I tried to find that "Hair,Hair Hair" thread and had difficulty. Which forum is it written under.
Vivian
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HI VIVIAN
The hair thread is in THE ACTIVE TOPICS its about the 7 th topic down , i felt the same way about the shave thing i wanted to be in control of something that was happening to me, when are you starting chemo ?hope it all goes well for you, Ive got one more to go then onto RADS
PRINCESS JOJO
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Vivian - I've put a link to the topic Hair Hair Hair below. Just cut/paste into your brower (unless you can click directly from what I've pasted). I have it bookmarked as one of My Favorite Topics.
http://community.breastcancer.org/forum/69/topic/707348?page=143#idx_4281
Sherri
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Vivian, take the control...There is not a lot of control with cancer, so grab it while you can...have fun with shaving your hair as well. I found it made it easier..I don't mind my hair...In fact I think I might just miss those days of short showers, saving shampoo, no blow drying, just think of the money I saved not having my hair colored and highlighted...That alone is huge...I don't know what you ladies spend on your locks but if I get the full deal it is over $200..ouch...Hmmmm I think I deserve a pair of shoes...or a great bag..I only hope I don't fall down a ditch like JOJO..
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When and IF Arimidex goes generic I am going shopping!!! I've pretty much accepted the unruly hair of a lifetime but shoes or a great bag... I'm along on the trip! OOH, a pair of black leather boots! That will be #1 on my list.
pam
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Hi all,
I was diagnosed in September of 09. Had a bilateral mastectomy (left side my choice---ended up w/LCIS there) November 09, 13/15 positive nodes, stage III. Am now currently halfway through chemo (AC DONE!) and will get my first treatment of Taxol a week from Monday. Chemo has been a lot tougher than I expected, for that matter it makes the surgery look easy now. I had various side effects (none requiring hospitalization so I should consider myself lucky) the worst being AWFUL mouth sores after round 3 of AC. So far this round I have some thrush but no mouth sores. Am using an arsenal of preventatives, Biotene products, baking soda and water, Nystatin, etc, so I am keeping my fingers crossed.
Hope the Class of 09 is doing well today!
Love,
Sharon
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This is my first post. I've been reading and following along for some time now, but just officially joined. I was diagnosed with ductal in situ and invasive ductal of the right breast in November. Since then I've seen 3 oncology surgeons. I'm looking for honesty. I'm so frustrated that getting tests done takes so long, and then getting an honest answer takes even longer. Each time I've moved on because I didn't get honest answers and had to read them for myself when I got the reports of the various ultrasounds, mammograms, breast MRIs. I'm a nurse and I'm revolted when complete information is not included in the reports as well. When a specialist has to look at the actual films to define what "lymph adneopathy" really means. It's not the one lymph node that you've been told about, but really more. I'm angry. Where do you find honest answers so that you can really begin to move ahead? I know that I need a mastectomy and chemotherapy....and probably radiation therapy. How do I trust those who either don't want to answer questions or want to portion out the facts in little bits and pieces?
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Hi Vintage RN,
We all understand your frustration. Seems like medicine is so compartmentalized now that no one looks at the big picture. Also no one is willing to make "guesses" anymore. "What do you THINK will happen" is not an acceptable question. I understand no one has a crystal ball but they do have experience that should allow for reasonable predictions. I love my primary care doctor and trust him. So when all this started I asked him if he would take on the job of looking at all my reports and discussing my situation with me. He said yes. Everything goes to him and he calls me as soon as he gets reports so I don't have to wait for results til I can see the specialist who ordered the test. He arranged many of my consults and I had appts the next day, not a month later. Good news or bad news... I get it over the phone right away from someone I know and someone who cares about me. I don't tell my specialists that I already know what they are going to tell me... but I am not blindsided and speechless and I am ready with informed questions.
I do not live near a major cancer center so could not avail myself of the total care concept they offer. So I have created my own team and consider my PCP the team leader. One or two of my surgeons have made remarks, like they think my PCP is sticking his nose in or that he is not as sophisticated as they are, and I find that so insulting. I feel like he is the only one who looks at me as a whole person, not a breast or a specimen or a film. I tell everyone how high a regard I have for him.
This has worked for me.
Welcome Sharon!
You have been busy! We are always sorry to add a new member but glad to share with you. I hope the worst is behind you. If you have been "suffering in silence" you have found the right place to unload! We are here to listen, whether it is surgery, chemo, radiation or leaky pipes
Hope everyone is staying warm. It is even cold in Florida!
pam
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Thanks for the support Pam. I live in a small community and drive to a major medical center an hour plus from me to work. What makes this so hard is that I'm accustomed to functioning as a patient advocate and I make patient education a regular part of my job. I can't believe how little actual support I've gotten....oh, I get a pat on the shoulder and told "you'll get through this.....and a cure is possible or you've got lots of years ahead of you." My primary care physician is great, but he's so overloaded.
I recognize that for some women, not having all the factual information about the situation, is acceptable.....they just follow what the doctor maps out without question. However, I have too many years in health care to do that. I've asked why I haven't had a PET scan and bone scan and was told that I didn't need it.....not why I didn't need it. But, my situation is such that they need to take all the axillary lymph nodes and that it's likely that I have metastitic disease.....so, when do they propose to do tests?
Anyway, I appreciate the response. It's cold here, about 10 degrees.
Peg
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VintageRN,
I have copies here a post by "otter," a member on BC.org who I consider very knowledgeable. I hope she does not mind me quoting her. But it is pertinent to your questions.
pam
Harley, if it's any consolation to you, my tumor was Stage I and I'm not getting any scans, either. All of my diagnostic work-ups, treatments, and follow-up visits were/are being done at an NCI-designated "Comprehensive Cancer Center." I'd like to offer a link to the NCI website that describes the 65 NCI-designated Cancer Centers (58 of which care for patients) and the 40 NCI-designated Comprehensive Cancer Centers, but their website seems to be down right now. Here's a general description: https://cissecure.nci.nih.gov/factsheet/FactSheetSearch1_2.aspx I guess what I'm trying to say is that I think the treatment decisions and follow-up care provided at those centers is likely to be consistent with national standards-of-care in the U.S. Obviously there are exceptions -- MD Anderson is an NCI-designated Comprehensive Cancer Center, too; and someone on the previous page said scans were "standard procedure" there.ASCO was mentioned earlier as a source of information on standards-of-care for oncology. Another source is the National Comprehensive Cancer Network (NCCN). The NCCN is composed of 21 high-ranking U.S. cancer centers: http://www.nccn.org/members/network.aspThe NCCN has different "panels" that meet periodically (yearly, I think) to review new information and come up with guidelines for diagnosis and treatment of cancer. The panels are composed of oncologists who represent each of the member insititutions. It's my understanding that the oncologists are volunteers-- they are not paid by the NCCN for their service. The oncologists who serve on each of the panels are experts in the area for which that panel is responsible (e.g., breast cancer, ovarian cancer, prostate cancer, lung cancer, breast screening, ...).Okay... So, here's what the NCCN's 2010 Guidelines say about scans for routine pre-treatment workup in women with early-stage breast cancer. These are statements from various sections of the document dealing with initial diagnostic workup of BC. The last two paragraphs I'm quoting are marked as still being under discussion; so they aren't official yet:"FDG PET/CT is most helpful when standard staging studies are equivocal or suspicious, especially in the setting of locally advanced or metastatic disease. FDG PET/CT may also be helpful in identifying unsuspected regional nodal disease and/or distant metastasis in locally advanced breast cancer when used in addition to standard staging studies. PET/CT is not recommended for newly diagnosed stage I or II breast cancer.""The recommended work-up and staging of invasive breast cancer includes: history and physical exam; a complete blood cell count; platelet count; liver function tests; bilateral diagnostic mammography; breast ultrasonography, if necessary; tumor ER and PR determinations; HER2 tumor status determination; and pathology review. ... ""Additional staging studies involving bone scan or abdominal imaging using CT, ultrasound, or MRI are optional. These studies are not indicated in patients with stage I disease without signs/symptoms of metastatic disease, nor are they needed in many other patients with early-stage breast cancer. Radionuclide bone scanning and abdominal imaging with CT, ultrasound, or MRI are typically indicated only for patients with signs or symptoms related to bone or abdomen (e.g., bone scan if alkaline phosphatase is elevated, abdominal scan if liver function tests are abnormal) or in T3N1M0 disease.""The panel recommends against the use of positron emission tomography (PET) or PET/CT scanning in the staging of these patients. The recommendation against the use of PET scanning is because of the high false negative rate in the detection of lesions that are small (< 1 cm) and/or low grade, the relatively low sensitivity for detection of axillary nodal metastases, the low prior probability of patients having detectable metastatic disease, and the high rate of false-positive scans."This is what the NCCN Guidelines say about routine scans for post-treatment surveillance and follow-up of women with early-stage BC:"Post-therapy follow-up is optimally performed by members of the treatment team and includes the performance of regular physical examinations and mammography. In patients undergoing breast-conserving therapy, the first foll0w-up mammogram should be performed 6 – 12 months after the completion of breast-conserving radiation therapy. The routine performance of alkaline phosphatase and liver function tests are not included in the Guidelines. In addition, the Panel notes no evidence to support the use of “tumor markers” for breast cancer, and routine bone scans, CT scans, MRI scans, PET scans, or ultrasound examinations in the asymptomatic patient provide no advantage in survival or ability to palliate recurrent disease and are, therefore, not recommended."One routine "scan" that is recommended is a bone density scan (e.g., DEXA scan), especially for women who are being treated with an aromatase inhibitor. And, of course, routine mammograms are recommended. It's important to note that the NCCN is advising against the use of other types of routine scans (PET, CT, bone scans, etc.) in women with early-stage BC unless there are symptoms or other abnormal or suspicious findings. As strange and discomforting as it seems, those scans do not result in lengthening of our lives even if metastatic cancer is detected earlier. I guess we would find out sooner that we have Stage IV BC, so we would live longer with that knowledge. But, from what oncologists have learned from clinical trials, it really doesn't make any difference in the long-term outcome (lifespan or ability to treat the cancer once it reaches that point). I think one sad thing this tells us is that "modern medicine" still can't do very much for us once we've reached Stage IV. <sigh>Of course, YMMV with all this. Obviously there are a lot of oncologists in the U.S. who aren't following the ASCO or NCCN guidelines. We can tell from what we read on these boards that oncologists and surgeons use a lot of different approaches in BC dx and tx. IMHO, we shouldn't think that our medical care is substandard (lower quality) if we're not getting routine scans.otter0 -
vintageRN - I to am a nurse and know far too much. The doctors I think sometimes take it for granted and fail to tell us things, but I also think they just leave things out and don't tell us things at all, like the true side effects of radiation and chemo. Oh, I think they give us the general jist of it all, but they leave so much out. If they were just completely honest about it in the beginning we all have the information we need and be able to make different and more informed decisions about whether to have a lumpectomy or a mastectomy. FYI: I have been a nurse for 27 yrs in long term care.
{{{{Hugs}}}}
Renee
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Vintage -- for what it's worth, I was diagnosed with Stage II BC and prior to commencing chemo (which was necessary because I am HER2 positive) my ONC did order a Pet Scan, due to the 1 positive lymph node and the HER2 (which can be metastatic). She said it was to see if any cancer was present elsewhere in my body. As it was, the PET scan only saw the cancer in my breast; my ONC said that this meant that I had no other cancer "that could be seen" elsewhere in my body. Hopefully, there simply isn't any but they can only see what they can see (as I'm sure you know, since you are a nurse).
Lilah
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Hi Sharon - welcome!
VintageRN - Glad you posted. THIS STUFF CAN HAPPEN TO ANY OF US!
I am low this weekend after a long battle over having films read (or NOT.) Lots of our '09 ladies have carried me through a difficult period, much like the one you are facing now.
SO sorry to post such a long story. Those of you with a heavy load already, feel free to skim and move on.
I have not posted about it because everyone was so kind to help me though the bone mets scare - I didn't want to beat you all down with more information. But this might be a "good to know" for the rest of you. When this nonsense starts, you must FIGHT. And have an advocate with you if possible.
I'll try to condense the whole deal. Imagine my case is a volleyball, and each of these steps represents a pass from one doc to another:
1. Finished chemo, and during rads had severe back pain. Rad onc says go see back doc.
2. Went to back doc, who noticed a bone lesion on an old MRI. With my breast cancer diagnosis, he felt I should have another MRI to be sure this was not metastasis. Rad Onc agreed that it was a good idea.
3. MRI done at back doctor's hospital, not the onc's hospital. Results come back - multiple lesions on hip and femur. Report was vague, and back doc says he can't tell if this is cancer or not. I am scared beyond words. How many lesions? He can't tell. Says he's not an Onc, and sends me off with the films and report to see my med onc immediately.
4. Med onc, who is supposed to be my quarterback, passes the whole thing completely to the rad onc. Does not even call me or send a message. Rad onc says report is quite vague, and that often open-ended terms are used to avoid making any kind of a commitment. Sounds like legal BS to me. Do I have metastasis or not,damn it??!!!
5. Rad onc says she is not qualified to make a diagnosis by reading films. Why did the med onc send the films to her, then??!! Doc offers a second opinion on the films by the staff at her hospital. I agree this is a good idea. She also schedules a bone scan.
5. Bone scan doc tells me that the news is good. She sees no sign of metastatic cancer. This is the only information I have - STILL - to this date. A verbal "all clear." But a big HOORAY!!!
6. Rad onc says next step is a report that compares bone scan to MRI. That report never happened. Asked for it daily for at least 10 or 11 days. Why no report? "We curbsided it." Direct quote. What does THAT mean? She tells me that they cannot read the report because I did not have the MRI done at their hospital. Later that day, I called her nurse to clarify that heard I correctly.
7. On my final day of rads, the doc meets me with a nurse who is taking notes. (In the corporate world, this is classic protocol when things may elevate to an "uncomfortable" level.) I am tired and frustrated. She goes on to clarify that they cannot read the films because they need the RAW DATA from the file. They need to be able to manipulate it to make a diagnosis. "Curbside" means a quick look and a verbal opinion, as if you did a drive through at a fast food place. By the way, she tells me at this point that the reading doctor said it does not look like cancer.
8. If they knew they did not have everything they needed to make a diagnosis, why did it take so darned long to figure all of this out? I ask if she thinks by back surgeon will accept a verbal opinion. She says, "No." I asked for my MRI and bone scan records. Got the MRI films, still have to get bone scans - must sign a release in a different department.
9. They offered, as a gesture of kindness, like this was a pile of gold, to do a diagnosis if I could get the raw data to them. No thank you. Enough of this.
10. I cried. Doggone it, I cried in front of them. Told them cancer is an awful thing to battle - NO ONE should have to go through this administrative nonsense, too.
The friends who went to these appointments with me are urging a second opinion from MD Anderson. This sounds so extreme. I know there is no cancer, but I need a report, doggone it. Still no pain management for the back - need to have a report to move on.
What would you ladies do?
Again, sorry for the long post. If it helps any of you, then it was worth it. DO NOT let administrative things get out of control when you are going through tx. It is hard when your brain and body and spirit hurts to get through red tape. Get a friend to step in and help you through this process.
Mary
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Mary, unless you are happy with leaving it as it is, I would be getting another opinion! I would want to be completely sure that everything is good. Did you get the MRI done during or shortly after radiation? I know that a breast MRI should not be done closely after Rads because the it afffects the view. Not sure about outside the field of the rads though! I'll be thinking and praying for you to get some actual firm information that you can rely on! All the best!
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Mary!
I am so sorry you are going through this. Don't they realize how they are leaving you dangling? The problem, as I see it, is that no matter where you go they are going to want to start from scratch. Is it that simple... a repeat bone scan where you had the MRI? Would your insurance go for it? How in the world could you have foreseen these complications?
No one wants to commit, sounds like. They are all waiting for someone else to be responsible. This is the problem those of us who are managing our own course run in to. I do think some place like M D Anderson would produce a joint statement. It's a lot to take on... going some place new and building a whole new relationship. But their drs do sit down together and consult. Do you live near a branch?
Wishing you strength and endurance,
pam
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Mary-I am so sorry for all of this "krap" you are having to go through. I thought it was all done for you and you could now move on. I agree with Mary Louise, just to give yourself some peace of mind do whatever you need to do, especially to get relief and pain meds for the back pain you are having. No one should have to suffer. I should know as well as you. My rad onc wouldn't give me any pain meds for my burns, not even any other cream. I'm lucky I'm a nurse and know what won't interfere and have a friend that is a pharmacist that was willing to let me have some Silvadene cream. (shaking head) I just don't understand?
Hoping and praying that everything works out for you. My rads onc did offer to do a PET scan and I originally said no. I am thinking for my own peace of mind that if my insurance will pay for it I may get it done if he still will do it. I may ask. I don't know. There's a part of me that says why go there? I was only a stage 1, well differentiated with only some DCIS on the sides and no lymphnode involvement. I think it is standard protocol to not do PET scans for stage 1's from the research I've done and your tumor is below a certain size and apparently mine was.
Renee
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Mary ~ I am just so sorry for all you are dealing with. I cannot imagine your anxiety. Definately I would get a second opinion and a "clear" answer. Sometimes I think with cancer there is just no sure NO - and dr's cover their asses. It is unacceptable !!!
Hugs ~
Alicia
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Pam - I finally got around to reading and watching the article on the gentleman and lady that got the overdoses of radiation in New York, that is so irresponsible! And it totally makes me irate as a health care professional. I'm not going to get on my soapbox again, but thank you so much for posting that. I only wish I knew in Nov. when I was in the decision making phase what I know now and I could have asked so many more questions. But, we live and we learn. Hopefully many others have been able to arm themselves with the right questions to ask their rads oncs and techs.
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