Stage 2 Sisters Club
Comments
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Most people start feeling better and more energetic once they get to taxol.
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Well, it depends on the person. Taxol #3 gave me CIPN (neuropathy), which I still have in my fingers and toes. By the 4th Taxol, I was not doing well and they had to postpone it for a few days because of neutropenia. Basically both types kicked me down. I was very glad I wasn't working.
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Hi everyone! New to the thread...I've been active on my chemo thread, but just found you-all tonight. It's very encouraging seeing your stories and outcomes!
I'm half-way through chemo, which has been a little rough, and making decisions about upcoming surgery. My MO and BS both say I'm the perfect candidate for lumpectomy and oncolplasty or mastectomy. Either way, radiation is a must because of my tumor size. They are completely leaving it up to me and while it's nice to have options, I wish they would just say "do this".
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Welcome, wlo!
Beesie is one of the resident experts on the boards. I am copying a very well thought out post she did awhile ago on the lumpectomy/mastectomy topic. Maybe you will find it helpful.
"Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.
Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:
Lumpectomy May Have Better Survival Than Mastectomy
Now, on to my list of the considerations:
- Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
- Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
- Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
- How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
- Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
- If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
- How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
- If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
- If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
- If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
- Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
- Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
- Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
- How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
- How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?
.I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!"
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That was such a thoughtful post Ruthbru.
We have decisions to make. Sometimes we use statistics, sometimes we acknowledge our emotions.
I especially liked that part about the UMX. I decided that I could keep the other breast after I had a stereostatic biopsy and enough ultrasounds to convince myself that the breast tissue was healthy. If I develop any future problems, I will know that I am 'grateful for the extra time' I had with my breast. I took all the action I could at the time with the information that I had to go on.
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Thanks for all the great info Ruthbru!
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Ccmc2. I had the DD taxol. Didn't feel as sick but boy did I ever get body pain! Had to take Tylenol 3 s before I tried loratidine (Claritin) which really helped
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hello, I just found this group, ruthbru, very informative postI
have a comment and questions....please
1) comment.. cccmc2: dr told me it takes a couple weeks for AC side effects to get out if your system...I found the severe nausea I had with AC did hang on very slightly, for 2 weeks, when I started Taxol right after. Then no nausea..yahoo!
2) question..I had a bilateral mastectomy...and have nerve pain(neuropathy) from the surgery, on the left chest, underarm and arm. Each Taxol treatment makes it increasingly painful, where it feels like I have a tight band around whole chest area.... does anyone else have this? I take Gabapentin, but it doesn’t help completely. I was just changed to Abraxane, first treatment today because of the pain. This was 9/12 treatment. If you have same symptoms...what do you do to help relieve the pain. Oh, I also go for massage therapy for chest each week after chemo. I’m hoping Abraxane doesn’t have the same side effect..if so I may have to stop treatments...don’t want this to become permanent.
3) question..and has anyone stopped treatment early? Any encouraging thoughts about this?
4) question.. dr today said I should think about not doing radiation as it can cause permanent damage to the nerves and since I’m already having nerve issues I may not want to add to the pain. Anyone skip radiation..positive thoughts about this?
Thanks. I am Stage IIA, Grade 2, Onco 22
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really I don't know why the doctors said if you are high er+ pr+ with her2 negative is good sign to your cancer cells!! my chances to be cancer-free is highest when we compared with other types according to the doctors. I think this is not true. by quick check to the signatures of the patient here you will find out the er+ pr+ are the highest aggresive cancer ( grade 3 ), highest growth speed of cells ( ki67 ). and a lot of research said the chances to develope new cancer in the future higher than triple negative after 5 years. the chemo not working well with er+ pr+ compared with er- pr- and her2+ . mose of the grades of other types of cancers are low, ki67 also low with good reaction and high complete respond Pcr with chemo. you will never find Pcr with er+ pr+ !
so why they said er+ pr+ is the best for treatment? and why they said the survival rate is 93% and my chance to recurrence rate is 20-30% ?
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Hope, I don’t know where you are getting your information, but Er+ is considered a better prognosis because you can treat it with antihormonals for many years and usually it is not as aggressive as triple negative and HER2+. Those types are best fought with chemo and Herceptin, etc. and have improved prognoses from past years. In general, 20% - 30% of all types may recur, but that does not speak specifically to your cancer. I believe that you said where you live the Oncotype is not available. I see that you have had chemo. Are you on a antihormonal drug such as Tamoxifen or Arimidex? They are considered your best defense with an ER+ cancer. And yes, the rate of recurrence goes down for triple negative after 5 years, but the chances of recurrence within the 5 years is higher. There are positives and negatives for any type of cancer. We just need to do what we can to fight ours and have faith that we have done all that we can, including exercising daily.0
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Peregrinelady, onco test is available but my consultant said it's useless in my case due to lymph node involved. that's why I took 6 cycles chemo to clear up any escape cells. in my case, one lymph node metastasized, size 3mm in one node after chemo ( he said if cancer reached to lymph nodes with 0.001 mm looks same with 2 cm reached. no different!) . my oncology said the recurrence rate in your stage is 20-30% in general of er+ pr+ and her2 negative because there is no study classify the recurrence rate by stage 2a or 2b . as I understood him, if you are stage lla with minimum lymph nodes and tumour size mean your recurrence rate is 20%, if you are with maximum size of tumour and lymph node involved " 3 positive lymph nodes" , your recurrence will be 30% .
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Hi Hope...where are you from? The 20 to 30% of early breast cancers that recur are inclusive of stages 1-3 (all considered early). Your chance for recurrence depends on many things apart from general statistics...pathology is an art - your pathology report is only as good as the pathologist who looks at your cells under the microscope so ki67, grades are all somewhat subjective measures...
My Onco also told me that with 2 lymph nodes involved that Oncotype or Mammaprint would not change his mind about chemo but he did say that anti-hormonals (Arimidex or Aromasin or Femara) would be the most important weapon against this cancer - much more so than chemo or radiation (I had both).
Anyway, do pm me if you want to discuss further
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My radiation oncologist told me that radiation after chemo drops recurrence rate to 5% from 20%. I am going to to radiation because of it. And of course, Tamoxifen. Hope, cheer up, we are in a good place right now. Or will be after the treatments.
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I am having nerve issues under the radiated armpit area one year out from treatment. It is interesting that calee55 mentioned her nerve issues with Taxol, and her doctor's concerns about compounding nerve issues, as I have lingering CIPN from the Taxol, too.
I would still recommend going forward with radiation, especially if your cancer was near the chest wall like mine was.
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When I had just finished 'active treatment' and was obsessing about my own 'statistics', my very wise oncologist said, "You have done all the recommended medical treatments and are exercising, keeping your weight down and following a healthy lifestyle. You are doing everything you can, the rest you have to leave to God." (You can insert 'a higher power', 'fate', 'luck'....whatever fits into your belief system). The point is that there is nothing you can do about your pathology report, it is what it is. Once you've used it to make treatment decisions, it is better to never think of it again. And, very bluntly, cancer is either not going to recur (and it shouldn't for us), or it is. If it doesn't, then whatever time I've spent worrying about it has been wasted time; and if it does, then I REALLY better be out doing all the things I want to do RIGHT NOW! (Which is what everyone in the world should be doing anyway, cancer or no cancer.)
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https://www.breastcancer.org/research-news/distant...
This is the best article I found on the site because it breaks down recurrance by the number of lymph nodes that had cancer.
cccmc2: I agree that taking Claritin prior to the Taxol chemo treatment is very helpful. It reduces body pain.
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Ruthbru - very wise words...thank you for sharing 🙏
Mexico Heather - thanks for the link!
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Ruthbru, I think along the same lines! Thanks for being positive. P.S.The link doesn't work
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ruth-I agree with you. My oncologist asked why I am always smiling? I told him I'm happy most of the time. I have control over my nutrition, my exercise and my attitude. I don't have control over a recurrence of my cancer. I don't dwell on it. My life is forliving
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MexicoHeath...shoot that link isn’t working
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Totally agree! I feel and look better than I did before DX. I lost 5 lbs, I eat healthy, I exercise, I drink Tumeric and Ginger shots or green smoothies everyday,( juice bars are everywhere here) and I am happier because I am grateful for my life. My husband tries not to stress me out, and kids are helpful too. Dog is happier now that I walk her everyday.Life is beautiful.
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Having a really hard couple of days. Out of the blue. Not sure where it’s coming from.... my diagnosis is scaring the hell out of me.... i keep thinking what if they missed something...I hope this feeling passes. I am generally a happy and positive person but I’ve ive been letting my mind goto negative places. I guess I am just venting?
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cccmc2, I am like that sometimes as well. It’s very easy to move me to tears these days. My integrative physician encouraged me to do expressive writing every day for a few minutes. I’ve been doing it for 3 days now, and I find it really helps. Here’s what you should do: just get a pen and a paper or Sit at a laptop, and write whatever comes into your head. Don’t edit, don’t even read what you wrote if you don’t want to (I don’t). Even if it doesn’t make much sense, write it out. She called it mental detox. Apparently there were studies that compared people who did it vs. people who didn’t, and the ones who wrote were doing better mentally and health-wise, than the ones who didn’t. Basically, the idea is to allow yourself a few minutes of bitching and venting (or crying) every day, and once it’s done, you can move on with your life. All the negativity will stay on the paper.
How are you feeling otherwise? You, like me should be nearing your 4th AC now, right? If yes, we are almost half way there! If something was missed, chemo and rads will take care of it. And watch comedies! Laughter is a great medicine.0 -
I watched 'The Best of Carson' when doing chemo, and last year when I had a hysterectomy, I watched all 7 seasons of Mary Tyler Moore. A great distraction plus a good use of the 'down time' as some of those old series are classics and really, really funny.
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InnaB2018
yes I start my taxol in 2 weeks. I will try the writing! It can only help. Thank you so much for your thoughtful response it means a lot💕
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and ok. It will be hard but I’ll put down my murder mystery shows and try a comedy!!
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Murder Mysteries, while not particularly cheerful, are good distractions too.
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CCCM2 - I hope you are feeling better. When I was still doing chemo, I found myself to be rather emotional and easily overwhelmed. I distracted myself with sports on tv, and fun reading and steered clear of troubling news reports or heavy topics in books - just anything sad or violent. One Saturday when I was home alone, I watched one of those reality shows about people shopping for RVs.
MexicoHealth - thank you for the link - rather interesting to read. These lifestyle changes are for the long haul so better to ease into the changes and find the ones that you can stick with.
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Ok, I read the article. Very informative, but basically what they said was: take Tamoxifen for 10 years, or else. Plus, there were many changes in the treatment since 1979. I’ll hope for the best
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