August 2010...anyone starting chemo besides me?!
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Tomorrow I go to see rad. onc. to get her opinion if I should have radiation or not.I had bil mx but one of the 3 tumors was right one the rib with just a 1mm margin so my onc. thought we needed another opinion. Anyone else have a similar issue?
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IowaSue my tumor was considered clear margins but was still only .75 mm from posterior margin. Also with large tumors over 5cm they usually recommend radiation but… the rad onc felt that I was doing such aggressive treatment with surgery, chemo (TCH x 6), year of Herceptin and 5 years of Arimidex that she felt that it was best not to stress my body any further. The rads would be on the left side too so it would have put more stress on my heart which might already be stressed with Herceptin.
I was in a grey area though. My PS told me there are so many things to consider for radiation these days they he couldn't keep up with it anymore. I thought for sure I would need it.
My onc also would not give her opinion and sent me to the rad onc. I hope you get a pass too.
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Rachel - my onc. and i talked about being done and her exact words were "it's very anticlimactic - and any feelings you have of being cut loose, confused (like what next..) etc are all very normal". She suggested a support group, but I have this board and i just don't want to LIVE BC with a support group right now. I need a break from bc.
I start tamox in three weeks. I'm nervous about that too. Not a great drug to need to take...
She's a great doctor - my friend knitted matching scarves for my doctor and me and gave them to us when she came in for my exam and the doctor almost cried -she got very emotional. I am blessed to have such a good doctor.
But tonight I just feel strange - not even "elated" just strange I guess because we're under such stress moving ahead - electric bill came tonight and it was way more than double of last month and there's nothing different we've done....except our pellet stove which is just a fan and never increased our electric before. So I have to call the electric company tomorrow and find out what is going on.
It's like you should be done with chemo and live should be sunshine and roses......at least I think so....
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I really dont see how scans arent protocol- how would they know if they got it all? Cal- Is your dr following your tumor markers? Is it because you had a mx done???
I guess its just weird for me because I will get scans more frequently and gradually taper off as the years go by....
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Hi All,
I have been lurking, following all of you closely, but haven't posted for a while. Congrats to Cal, Rachel and Lisa. It was helpful hearing your reactions to being done with chemo. I finished two weeks ago today, and finally am feeling happy and THANKFUL (to all my friends and family who have been so good to me and to all of you for support, and sharing your journeys), but my first reaction was definitely anticlimactic. It was more relief and some disbelief...can this chapter really be over?
I also turned my thoughts immediately to the next chapter, which I imagine many of the rest of you will do too, as this isn't the last step of treatment for many of us. I am headed towards a BMX with TEs in early Jan. I know some of you have been through this. Any advice would be MUCH appreciated. I have started following some of the mastectomy threads. It all sound scary. The whole thing makes me feel sad, but it is about time (I had a lumpectomy and re-excision over the summer, all invasive cancer was removed, but there were patches of DCIS)
I wish you all a Happy Holiday, and few SEs so that you can enjoy it!
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Hi Elizabeth: I had a BMX with TEs in early July. It went pretty smoothly, my only problem was I had one stubborn drain that wouldn't stop and I had to keep it in 6 weeks, which delayed my chemo. The TEs come out and implants go in sometime in January, IF I stay on schedule and get to finish chemo in early Dec. If you have specific questions, I'll be glad to share my experience, just send me a PM.
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Texas et al - this is from the Johns Hopkins website and explains why scans aren't recommended as follow up for BC unless there are tumors elsewhere or symptoms. I found this posting on the Moving Beyond board. Maybe it will be helpful. I was surprised to see that Johns Hopkins does not recommend routine scans once you are done.
My doctor does follow up with tumor markers every few months, however it looks as if even that is not very accurate from some things I've read and JH doesn't recommend it. I will have it anywy though, as that was her recommendation.
Please see the bold section especially (have to scroll down) and that explains the reasons.....
Copied this from
http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/post_treatment.shtmlBeing diagnosed with breast cancer is a life altering experience. Though your surgical and medical treatment may be over, the effects of having been diagnosed and treated may continue for some time. After treatment your body is different. You have lost part or all of your breast(s). You've undergone lymph node surgery. You may have had chemotherapy, radiation, or both. Each phase of treatment unto itself is unique and how your body and mind coped with it during and after care is equally unique. It is common to have remaining concerns about your health and how to best move forward after treatment ends. There are some similarities about how women feel after treatment too and learning about these common reactions can help to prepare you for life after treatment. Your doctors, nurses, and other Breast Center team members want to see you well again. Defining wellness for each patient can be different. It is rare that anyone having had breast cancer feels physically or psychologically as they did before their diagnosis but all patients should look forward to being healthy again
All breast cancer survivors live with concern about recurrence of breast cancer. This fear is usually the biggest worry of all. Women feel that their body has betrayed them and therefore it takes time to trust it again. Learning how to cope with fears of recurrence is important so that you can make the most of your life and what it has to offer you and you offer to it. And though your body has gone through many changes as a result of the cancer diagnosis and treatment, you will more than likely find yourself healthy, strong, and optimistic once again.
Your body has been through physical changes. You may have a different silhouette than you had before. Depending on the type of breast surgery performed, you may have some potential physical restrictions related to reconstructive surgery or to having lymph nodes removed or both. You may be experiencing skin or breast changes as a result of radiation therapy. As a result of chemotherapy your hair may still be gone or just now starting to grow back. You may also be experiencing symptoms of menopause.
So why are family and friends saying to you now that you should be getting your life back to normal? Partly because they desperately want to see things in your life (and theirs) back to the way it was before your diagnosis of breast cancer. And perhaps so would you.
We can't rewind the clock however. This life altering experience can't be erased. So let's see how to begin a new life with a new definition of "normal" for you. It is not uncommon for women who have experienced breast cancer to find that this experience in the long run has made their life better and helped them to learn some valuable things about themselves and make their new life after treatment more fulfilling. Priorities are set differently going forward, relationships are strengthened, and what is important in life takes on a different meaning.
This booklet contains information to help you and your family adjust to your "new normal" and define how to cope with symptoms that linger after treatment, deal with fear of recurrence, and learn ways to adjust to other changes that your body may experience in the future, like menopause. We want to help you achieve that "new normal" so that you can enjoy living and feel confident again in trusting your body, making the most of each day, and gaining insight into how this breast cancer experience can result in a new beginning for you.
Recurrence And Follow-Up
Once the treatment for breast cancer is completed, patients enter a period of follow-up which remains ongoing for the rest of their lives. During follow-up, the major concern of patients and their doctors is further problems with breast cancer. You will also be watched for any long-term side effects from the treatment you received. These problems can take two forms. The original breast cancer can recur or a patient can develop a new breast cancer. It is important to distinguish these two because the prognosis is very different for each. The most serious form of recurrence is metastasis that develops when breast cancer spreads to other sites in the body. A second type of recurrence, which has a more favorable prognosis, is when breast cancer is detected at or near the original site in the breast in a patient who has had breast-conserving therapy.Patients who have had one breast cancer are at higher-than-average risk for developing another breast cancer. The new breast cancer can develop in remaining breast tissue, including the conserved breast in a patient who has had breast-conserving therapy, or in the opposite breast.
Studies show that about 80% of breast cancer recurrences are detected by the patient herself either because she developed symptoms or she detected some physical abnormality. The second most common way in which recurrences are detected is by physical exam performed by a physician or other care provider or by mammogram at the time of the patient's annual breast x-ray. Only uncommonly do laboratory or radiology tests detect metastases in the absence of symptoms or physical abnormalities.
All breast cancer survivors are highly attuned to their bodies. They notice everything. Moreover, it is the norm for patients to worry that any symptom or physical abnormality is related to breast cancer. This is not the case. However, the anxiety about recurrence is so pervasive that it is hard for patients not to assume that symptoms or physical abnormalities are related to breast cancer. This anxiety tends to be greatest soon after diagnosis and initial treatment. It gradually subsides, but never fully goes away.
It's important to remember that breast cancer survivors are not immune to everyday aches and pains. However, breast cancer patients don't think of aches and pains as everyday. Symptoms that breast cancer patients would have ignored before their diagnosis are now taken ever so seriously. While it is important to pay attention to symptoms, it is also important not to assume the worst. Unless symptoms are very clearly in need of medical attention immediately, it is best to give them a week or two to see if they will go away on their own. Most symptoms and physical abnormalities go away on their own. Most will never be explained. Symptoms that are related to cancer do not go away. They may come and go initially, but eventually cancer-related symptoms persist and worse symptoms that wax and wane or come and go without worsening are very unlikely to related to cancer. If symptoms or physical findings do not go away or if they become more persistent or severe, it is suggested that they be brought to the attention of the physician.
Follow-up after diagnosis and initial treatment should include regularly scheduled visits with breast cancer doctors, special gynecologists, as well as mammography. It is important to point out that the recommendation against screening tests for distant recurrences does not apply to screening for new breast cancers or for a recurrence in the same breast following breast conservation treatment. Screening for new breast cancers is done by mammography. Screening mammography has been shown to improve survival. In other words screening mammograms can pick up cancers early enough that effective treatment can be instituted. Therefore, during post treatment follow-up, breast cancer survivors are encouraged to have routine screening mammography. Typically the uninvolved breast should be screened annually while a conserved breast should be screened every six months for the first one to two years and then annually.
Screening tests for metastases have not been shown to improve the outcome of patients. Therefore, they are not recommended. In other words, blood tests, including tumor or cancer markers, x-rays, and scans are not recommended on a routine basis in the absence of symptoms or abnormal physical findings. On the other hand, some or all of these tests are warranted in an attempt to explain symptoms or abnormal physical findings.
Patients are typically perplexed that blood tests, x-rays and scans to search for asymptomatic metastases are not recommended. It is quite natural to believe that the outcome of treatment of metastases will be better if they are detected as early as possible. Unfortunately, this is currently not the case. Typically, screening tests for metastases will only pick up abnormalities a few weeks or months before they would cause symptoms and be otherwise detected. However, your chances of responding or benefiting from breast cancer treatment once it has metastasized are essentially the same regardless of when treatment is started. Two large clinical trials have shown that patients who have screening laboratory work for metastases do not have any better outcome or quality of life than patients who do not have these tests.
Research into more accurate ways to detect metastases is ongoing. At the same time, there is enormous effort underway to develop better treatments for metastatic breast cancer. It is hoped and expected that in the future there will be more effective screening tests and treatments for metastases. At that time, screening for metastases may become routine. Until then however, it is not recommended. More detailed information on follow-up recommendations after your initial diagnosis and treatment is available in the public area of the American Society of Clinical Oncology web site (www.asco.org).
With regards to physician follow-up, it is important that patients follow-up with all of the physicians involved in their treatment. However, this follow-up should be done sequentially rather than in parallel. It is suggested that patients see one of their breast cancer doctors every three to six months during the first 3 years after diagnosis, then 6-12 months for the next 2 years, then annually. Your breast cancer team will help you in making these follow up appointments at the appropriate intervals. Thereafter, follow-up visits can be every 6 to 12 months. While patients will always need breast screening, they may not always need to have follow-up with the physicians who treated their breast cancer. After five or more years of follow-up, patients may be able to be followed by an internist, gynecologist, or primary care physician knowledgeable about the health issues of breast cancer survivors.
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Hi all...
Sending warm wishes and hugs...
I have so much in my head... But after finishing my homework... I do not feel like typing...
I talk alot... lol...
Sweeny...You described my night sweat... I have a remote for my fan...I wake up out my sleep to turn it on...Take off all my pajamas... Then I am freezing... Put everything back on...uuuggghhh...
Why do I have to have herceptin...uuuggghhh... All I can say is I will show up in as scheduled when the time comes.
Final Chemo... I am elated... As long as the SE is not comparable to that (TCH chemo)... Herceptin should be a cinch...
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Sohard - WHERE did you get the fan with a remote?? I gotta get one of those!!0
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Calamtykel- thanks for posting that...that's EXACTLY how I'm feeling. People want to wrap up this experience and just put it away b/c they all want me to be BETTER. But I feel like, in some ways, it's just beginning again. In a different way/path. Anyway, thanks. It feels good to read this and know that I'm not just making this up!
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Good evening chemosabes and radicals-
CHEMO fosters Stockholm Syndrome...we feel comfortable in the care of that which is making us sick! I was listening to NPR last night and there was a woman talking about her bc experience and then post-chemo experience. Chemo makes us feel comfortable it is killing the bad stuff but once we are over it, there is a deep-seated recognition that the "bad stuff" might be able to set up camp again. It is unnerving which is also why the end of chemo is the start of a new awareness. I hate to say it but I feel like the ticking time bomb.
As for scans, I think cancer has to have reached a certain size which, by the time a scan picks up on it, it must be pretty big therefore post-chemo scanning for the sake of trying to find it is a waste of time. It will need time to grow and present itself again.
Canadian healthcare...I met up with friends tonight and one of my friends' brother lives in Canada. He also has lung cancer. He was telling me how advanced his "socialized Canadian healthcare" is compared to his SIL who is livin' in the good ol' US of A and has female system cancer. What a great, great night I had!!!!!
The search for winter boots has come to an end!! And I got nice, cozy slippers also! Good times!
Sweet dreams to all and to all a good night
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I went to my Doctor appointment today. My chemo is no officially done unless the Neuropathy I have reverses itself in the next week. The doctor said my neuropathy would become permanent if we continued to push Taxol. Currently my foot bottoms are numb, I feel nothing on them. My fingers are tingling and feel numb like they are covered by thin cloth.
I guess I am supposed to be happy but it scares me to end Chemo early. My Doc says that my stats are a 100% chance the Neuropathy will become worse and permanent vs a 2% chance of recurrance. which could happen. I am of course paraphrasing.
My tongue is still feeling burned and tastes are transformed into unpleasant tastes.I actually lost 8 pounds on the last 2 weeks. I wonder if this is part of neuropathy.?
I also got a UTI yesterday. I thought I felt unwell and then I found out why.
The Doc says I will get stronger, feel better as I move farther away from chemo. I can hardly walk across a rom withour feeling winded.
I will begin Radiation in January.
My mind is just not settled around this, I had been prepared to do anything they said, to tough it out. Now I am told to stop, that is a big shift of gears.
I am happy that many of you are finishing up! Calamity!!! Texas, hopin for keys to come your way soon. Iowa,Sweeny, LizzyMAck, WHerria everybody!!!! Hugs to you all.
Ginger
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Cal, thank you for posting that article. Interesting, my Onc will be doing tests after chemo is done. But I am a 111c so that may be why. Thank you for posting.
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Sue: I'm not exactly like you, but a little similar. They did not get a clean margin with me at all, and it was due to the tumor being really close to the skin.
Something interesting my chemo onc. told me is that after a mastectomy there is not good blood flow to that area so they can't count on the chemo/Tamoxifen to block or kill anything that might be left behind after the surgery.
Cal: My life doesn't feel like sunshine and roses now, but it is a heck of a lot nicer with no more chemo. I am definitely glad to be done with that. I don't know how I will feel once the rads are done. Right now I still feel knee deep in the fight.
Elizabeth: I too had a bil mx in July with TE. The surgery is really not that bad. Are they removing lymph nodes? The drains are a big pain and I couldn't wait to get those out. They started getting sore by the end and made it hard to sleep. Getting used to the TEs is a big deal. There is so much pressure. But as your skin stretches you feel less discomfort ... and then they fill you up more. Blah!
Ginger: I can understand that it is difficult to not finish with the "plan" even though the % point in favor of stopping. Big hugs for you.
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Ginger - I believe your doctor is definitely correct! I remember reading on another board where someone couldn't finish their final taxol and it would only add 3% or something onto survival, So yes, the 2% is probably right for the final taxol and that's a very small percentage! I think he/you made the right choice. If you're body's had it, it's had it and you need your body functioning to fight a recurrance also.
Did you guys know that many people who die of natural causes have had cancer sometime in their lifetimes and never know it - their body fights it and it goes away? They found this from studying autopsys. Interesting.
So yes, here we are; either approaching the end, or at the end. It's an odd feeling of being cut loose and scary as some of us move ahead to tamox. I haven't even looked at the SE's yet of that, but I do know it has an increased blod clot risk as well as endometrial cancer. LOVELY! Also, the reason they only do it for five years is that BC cells become resistant to it.
Wish I didn't have to take it....but.............
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Lizzy - I think I remember reading or being told that a scan can only pick up a tumor over 12/cm.
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OOPs - that's 1/2 not 12!
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Cal and Ginger - I have such a hard time with these %'s sometimes - Ginger did you mean what Cal said, that not doing the last couple taxols would add 2% to your overal risk of recurrence or that your risk of recurrence was 2%? I think Cal interpreted it right, is that true? It is really useful information for me because I am going in for number 5 TCH TODAY! and am going to talk to the Dr. about not doing number 6 because of my neuropathy. Thx.0
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Omaz: I think what they mean is the risks of doing more chemo vs the benefit to lowering recurrance rate is negligible so they will not. Good luck on #5 and you need to use this same type of math when talking to your onc about #6.
Scans: if we already had mets, or like me b/c they *thought* it spread to my skull etc..., they would be rescanning for sure. I know I am getting a post-chemo muga and they will probably CT scan my head. Aside from that, and with no pre-chemo spread concern, post-scans are a waste of time and money. In addition, they give the patient a cruel form of false hope. I think it is best, except for in situations like Tex and I, that they forego all post-chemo scanning.
However, this leads me into my next question: what are symptoms?! In the event of recurrence, how are we to even know?! I was the only one who said I had a systemic tired washing over my body and joint aches that were outrageous pre-dx but I also had 2.5cm IDC and 3.5cm DCIS so I think I might have been a little further gone (!) than most of you. What symptoms should we be looking for? Itching boobs?
BMX: it was hard, at 40, with only 1 boob affected, to decide on a bmx but after going through all the stories on this site, and knowing I wanted to maximize my chances, I elected it. I also had, not joking, insurance in the back of my mind! I thought if I did everything I could now, they might look more kindly upon insuring me later! It was all these "margin" stories that really did it for me. In the end, I made the *correct* choice for me as they would have NEVER been able to get clean margins b/c of all the DCIS cells and they also would NOT have known they did not get clean margins. It is not like cancer cells are rainbow colored when they cut you open, readily identifiable for removal! Especially DCIS....sneaky stuff. My heart goes out to those of you without clean margins as that is worse than these damn water balloons in my chest. If I did not get clean margins and more surgery loomed, I would definitely consider mx, bmx as a future option because if they have to keep cutting, you are going to end up with damn near an mx anyway. The other way I put this in perspective is breasts serve no purpose and are simply ornamental. I know if my father could have gotten his lungs removed and LIVED he would have done so immediately. I think of all the people with cancer in body parts that are NOT expendable and how hard their choices are. For these reasons, bmx was it for me. Best of luck to those of you all grappling with the decision...it is not easy at all. In the end, the ladies here on this board helped me tremendously.
I hope you all have a lovely day, listen to some good tunes, keep your spirits up, smile at yourself in the mirror and get ready for Thanskgiving
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I found this in another forum...
2011 Cruise...
Here is an opportunity to meet some of the wonderful woman on this website and have some great times. Check it out;
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That sucks Ginger, but it seems numbers are def on your side if you stop chemo now.
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Hair - Gotta say, my head sure gets cold without hair, I have to wear a fleecy hat around the house now. BRRR!
(The hot flashes DO warm me back up though!)
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Who's doing tamoxofin once we're all done? I'm nervous about the side effects - it's SO long - five years.
Talked to my naturopath who said (OF COURSE he would say this) that it's a scam - that tamox really doesn't reduce your chances much at all and it increases the chance of uterine cancers, etc. I haven't looked at numbers yet - I know there are many women for whom tamox fails them......I will probably do it but I'm not happy about it.
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Omaz: I spend the bulk of my day in a TRAPPER HAT! I really do...even today it is overcast and 55 here but I still have my trapper hat on! Never realized how much hair insulates the head!
Calamtykel: I am on tamoxifen when this is done. I wish I were not. I have to research that one more.
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Omaz I look like a thug at home with my black cotton cap, black hoody and black or charcoal yoga pants. I look like I'm going to rob my home.0
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I can picture it Lago!
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SWEENEY
http://www.walmart.com/ip/Optimus-16-Oscillating-Stand-Fan-With-Remote-Control/11250077
Walmart Oscillating fan...
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Omaz - good luck with tx no. 5 today! I hope it doesn't make the neuropathy worse.
Question re: Fingernails - I know there were others here who said that they felt like someone had taken a hammer to their fingernails. I'm wondering if your onc's addressed it at all. I thought it was related to the nail changes I've been having (big red stripes on my nails), but my onc thought it was more neuropathy. The pain was really bad - throbbing really- right after my last tx. Now, a week later, it is better, but I still have a hard time using my fingertips for anything because the nails hurt.
OK - off to radiation fitting/measurement/tattoo. I'll let y'all know how it goes.
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I'm loving all the hats this time of year! Gotta say - this is the BEST time to be bald with all the great hats in the stores! I have three "girly" trapper hats that I love -and some knit hats from walmart and I bought myself a cool hat with flaps and long strings in wild colors from Five Below the other day. I'm amassing quite a collection! With some scarves to match!
AND of course we ALL have to get Santa hats! I got one at Five Below and wore it to chemo yesterday.
They're nice and soft and fit really well without hair! I was disappointed with Headcoverings.com where I ordered some of the white turban style hats - they don't fit right - they're too "short" or something and they come off too easily. I've done a lot better just getting funky hats int he stores! 0
