Stage 2 Sisters Club
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Pink, I had my biopsy Dec 19 and had the confirmation Dec 26 (merry Christmas !) and BMX 1/29/14 with TE filled to 200ccs. I can't imagine getting doing all of that in one week!
No wonder you are numb. I went through all the stages of grief before surgery and the waiting of surgery was the worst! The pain, discomfort, etc after was nothing compared to before. Until, the past week and now reality sets in, back to work next week, still uncomfortable (but doable) and still waiting on on onco type dx results and need for chemo ....don't get me started on that!
We all react differently. Everyone has been amazed at my resilience. Making lemonade :-). Just don't ask my DH this week. He is wonderful but I can't blame him for filing for divorce this week. Lol!
All reactions are normal. So glad we have a non judge mental place to vent!
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hi all,
Indeed perhaps everything has happened too fast for me. Went to have my stitches removed today. Went for heart scan to check if my heart is strong enuff for chemo. Today alone, I have seen 5 diff dr. My plastic surgeon, my oncologist, my breast surgeon, the heart scan surgeon n lastly a surgeon who wil be putting in the catheter in my chest for e chemo sessions. My catheter wil be placed next fri followed by my first chemo. A little scary but I think I can be brave.
I am really blessed that I have bought enough insurance to cover for all these. My 1 week hospitalization n surgery at a private hospital had cost S$71000. Each visit to each dr is at least $100-$200 for consultation. My AC chemo is gonna be bout $1500 each plus I'm taking a special jab after the chemo to ensure my RDC n WBC is ok ( if I m not wrong). This special jab is $1800 each. Not sure bout the weekly taxol. But heceptin is $3500 each. Really, I can't imagine wat wil happen if I not covered by insurance.. Scary high but it's always be cuz, all these are done in private clinics. If I'm going to govt hospitals, think I'm still on waiting list for operating theatre. The waiting wil def scare me.
To make myself feel better, I'm slimmer now w no tummy. I have a flat stomach too. Cool right? My DH said I'm crazy. But that's how I make e bad things seem positive. Actually he is very worried I can't accept being bald. I'm kinda putting off shaving. Think he is right, I really is scared of that. Though I know it wil grow back but kinda feel weird.
Another concern I have is, my oncologist said the chance of recurrence of cancer for me is 15%. Not the less than 1% my breast surgeon said. I am worried that after going thru all these surgeries, chemo, I'll get a recurrence.. Kinda worrying for e future. A little dumb.. But I really can't live w a second bout of it.
Two weeks ago, I m stil happily shopping, eating all my fav food, taking life n family for granted. Here I m now, worrying bout developing hernia if I stretch stomach too much, pain from injections, losing hair, mouth sores.. Life is sometimes a big joke.. But again, as I comforted others, God chose me to be e one to go thru these cos He knows I m strong enough for all these. He knows I have a good MIL n helper to take care of my boys, a DH n great siblings n parents to take care of me, many wonderful frens n colleagues to support me.
If not me, who?
I am really sorry for e long post. I'm just writing whatever that is on my mind.. Thank you.
I have one question, wil hair drop be immediate? Shd I really shave? Or wil I be e lucky one to escape hair loss?
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pinkpan,
Cutting hair is personal. I didn't want to have to deal with watching mine fall out so I cut it low. After the second AC treatment I had bald spots and had hubby shave it all off. Good luck.
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Pink, you may be comforted to know that your thoughts and emotions are very common to all,of us. I kept questioning why this was happening to me, but then I thought, why not me?
My hair started falling out three weeks after the first AC. It doesn't fall out all at once. I started noticing it in the shower and then in my brush. When it started coming out fast, I asked my friend to,shave my head. That way it wasn't so messy as my hair was long. I think that was the worst part, looking back.
Don't be sorry for,posting how you feel. That is why we all are here.
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Well, ONC said no chemo. So onto RADs I go Probably 33 treatments, low and slow. I shouldn't need boosts per ONC. My first RAD apt on Friday am so plan treatments CT Scan. Anyone know how long it takes before RADs start after CT scan? Ready to get on with it already.
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Flagirl, mine only took a week. I had simulation today and I start tomorrow.
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Hello all,
Welcome to Pink and Novagirl. Wonderful women here! And so helpful. You will get through this!
Mary Alice has scheduled her reconstruction surgery for May 8th. Between then and now we have to go for bone density testing, and a mammography. We are keeping our fingers crossed that all goes well! Love to all!
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Pink, with AC you will lose your hair. Mine started to go exactly two weeks after the first infusion & I had it shaved at that point. I felt better being able to choose WHEN it would happen. You should be thinking about what kind of head coverings you will want and get that in place. If you want a wig, you will want to order it now so you can match your hair color and get it styled before you need it. I would encourage you to also join a thread with ladies doing chemo right now. It can be helpful to visit with others going through the same thing right now. Yeah, my recurrence rate was about 15% too, but those statistics are based on people who have done treatment in the past, so I think ours is actually higher. Plus you can tip the scales further in your favor through keeping your weight down and exercise (which is a huge factor in reducing recurrence).
flagirl, so happy you can skip chemo!
JDB, glad things are moving forward for Mary Alice!
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nisa- thank you; it was a terrible shock. I had just talked with him a few hours before he collapsed. He was an organ donor so they didn't do a full autopsy. My GP had me do a stress test that I passed with flying colors. Taking aspirin is a precaution but a good one.
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Hello, newly diagnosed and only had mammo and needle biopsy so far. Just had the appointment with the surgeon this week. I have cancer in my right breast. The one lymph node tested did not have it, but surgeon is going to take a few to test. After hearing all my options, am going to have a double mastectomy. Right now I just want it out. Now. Hate that it is not scheduled already. I don't think I am dealing with it yet. I am divorced and live a lone with my beautiful dog. Kids grown.
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missing mercury, so sorry that you have to join our club but you have come to a great place for support and information. We all understanding how you feel and the waiting is the hardest part. You will get through this!
Gentle hugs!
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missingmercury - you have found a great place for support here . All these women (and men) will help you get through this unfortunate journey. Wishing you all the best! The best advice I can offer is to ASK for any help you think you'll need! And use this site - everyone here understands everything you are feeling and your road ahead! You will get through this, as scary as it may seem right now - 1step at a time. Hope you get your date for surgery soon! ((Hugs))
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Mercury, sorry you are here. I think everyone's first thought is 'just get it out', but I think it is important to do some research and to think through what each option really means. Beesie, one of the ladies who has done a lot of research, has a great post on pros and cons of the different surgical procedures, which I am reposting for you to think about. I would also check out some of the threads dealing with each choice.
Beesie's post:
- 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?
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Missingmercury, I am so sorry you are going through this. I have found this board to be a tremendous help,in dealing with all the emotions and getting good information. Have you set up an appointment with a plastic surgeon? My BS did not advise me to,get reconstruction at the time of BMX. That had its advantages because I had less pain healing and I healed quicker. Now, unfortunately, I face having another difficult surgery for reconstruction. At first I wasn't going to,do,reconstruction, but now I am thinking I will. I just wish I had the opportunity to discuss this further before my BMX.
Also, you say you are alone. If you have a BMX you will need some help at least for,the first couple of days to get around. If you have friends that could bring over meals, that would be great. Also, I could not drive for several weeks. I made sure I stocked up on supplies for several weeks.
If you have questions we are here for you. This waiting is the worst part. Once you have a plan you will get your bearings. We are here to,help.
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welcome, Missing, to where none of want to be, but as others have said, you are among friends. There are some especially good threads for those starting the journey, over in the before during and after surgery areas, as well as great information in the articles here on the bco site.
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Found a lady that just went through what I am at my work. So similar it is eerie. Comforting to hear her say how supportive the company was and to be able to ask questions about insurance. She also opted for a BMX and is glad. Surgery in Oct 2013 then chemo and is back at work. My surgery is estimated to be around April 18th or 25th. They must be on a Friday schedule.
My breasts today ache. Every tiny ache and pain is scary right now.
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Missing - Welcome to this wonderful group! I'm usually more active here but was gone for a few days.
I don't have much to add to the welcoming and supportive posts by others, except to say that good things started happening for me once I had my surgery. You will have a lot more clarity and a definite plan, and that will bring peace of mind...if you can envision that at this point!
Is it from the biopsy that you gather you are stage II and tumor size? I did not read all your posts so I am sorry if you already discussed that. The ostrich icon is cute. I would say manage the next weeks any way you can. Keeping your head distracted can be a helpful thing. And don't forget we are here for you!
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Anyone here EP+ but opted out of taking tamoxifen? During this past year's journey I have followed my gut on my choices and am at peace with each of them thus far. I can't help but feel taking this pill for 5 years is not worth the benefit...
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Johnetta, try it before you cross it off your list. You may find that you will do fine on it. You had positive nodes, which you know is not good, and you are both ER & PR positive, which means tamoxifin would give you much benefit. I was post menopausal & did 5 years of Arimidex with no real problems at all. The chemo I did lowered my recurrence risk by 20%, Arimidex lowered it by 40%.....huge! (And I was only mildly ER positive & PR negative so I imagine your percents would be even better). Anti-hormonals are the BIGGEST medical thing estrogen positive ladies can do to never have to play this game again!
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Johnnetta, I agree with Ruth. Hormonals, also known as "daily chemo", seem to be the best out there for women like you, Ruth and I. There is also Armidexa and its cousins that have shown great results in menopausal women. My SEs are easy to manage when I follow Ruth's advice which I do about 90% of the time - excessive, excercise! If you start thinking of these meds as responsible for keeping you as healthy as you can be, and perhaps even be cured, you might perceive side effects differently. Best wishes whichever way to go!
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Johnnetta - as Ruth & Nisa said, it is worth a try. I've been on it since May, side effects were tolerable, even the hot flashes. I went thru full hysto in Jan and will remain on tamoxifen probably for another year, per MO. Of course, everyone is different and it is ultimately your choice.
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Johnetta, I'll chime in and say that I've experienced virtually no side effects from Tamoxifen! I take Effexor with it (an anti-depressant) and I've had no side effects from that either! I has some hot flashes when I was gradually increasing the dose of Effexor, but now I have about 1 a day and its not bad. My understanding is that tamoxifen decreases my risk of reccurrance by 50%. To me, that's worth it!
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Found out today that the surgeon got my plastic surgeon appointment moved up two weeks and I will see them both.
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Good afternoon all.
Just dropped in to say hello. Welcome missingmercury. Great advise on this board. Mary Alice and I are going to a BC symposium this evening at our hospital which will be headed up by or MO. They will discuss all the latest about BC treatments. Should be interesting. Next Thursday is our first mammography since the diagnosis last April. It will be one year April 13th. Keeping our fingers crossed. I would say toes as well but unfortunately Alice stubbed and broke her little toe this morning!
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Joe - Sorry about the toe, ouch! I hope Alice was able to make the talk. Please share anything new you learned tonight. As for April 13, it will be an important date, always. Last week was my first anniversary of the results of biopsy and subsequent diagnosis. I had lots of memories and returning emotions. April 24 will be the a first anniversary of the BMX, and I will definitely celebrate that day!
Missingmercury - Did you see both docs? What's the latests? Hope you are doing well. Still a month to go for you. Yes, you are right. Even little pains are scary now. I agree that it gets better over time, however. Better days are ahead of you.
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Joe - hope Alice is doing well hobbling around!
Nisa - I will raise my glass to toast you on the 24th! I planned a party for April 25th for all of our friends that reached out to visit, send food, cut the grass and just pray and be supportive. It's my "Thank You" for everything they have all done for me and my family!!! We are at 35 people & counting! Will celebrate with the family a little early Easter Sunday.
Going in early Friday morning for hopefully, my last surgery. Going to have LVA (lymphatic bypass surgery) and hoping to get some relief from lymphedema. This is a long one (8 hrs) but tedious work and supposedly easy recovery, since it is minimally invasive. Cross your fingers for me it works!!!!
Hope everyone else is feeling well and minimal side effects!!! Hugs to all!
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Good luck on the surgery, mjs. Sounds like a great party!
Ouch on the toe! Definitely share the symposium information.
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Hi Nisa,
We did go to they conference last night and it was very interesting. It was headed up by our MO and BS and very informative. The talked about the conference in San Antonio and the latest news regarding treatment of BC. The main topic was targeted therapy and the understanding of what causes cells to mutate, then attacking those cells with vaccines made from our own cells. Sort of like a flu shot. Good things coming soon. We were glad we went.
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hi jdb53,
Was the conference at ST. Barnabas with Dr. Michaelson, Dr. Blackwood and Dr. Grann? I couldn't make it but had read that they are trying to develop a BC vaccine. The team at SB is awesome. I am so glad that I have them. I'm glad that you made it to the conference and foubd it informative.
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Yes lonnie it was. They are my wife's doctors as well. Except for Dr Grann. We went to Morristown for radiation as its closer to our house and Dr Wong is also tops in the field as well. I agree! Such a wonderful team at SB! They are doing a forum on nutrition Tuesday April 1st. My wife wants to go to that as well.
Hope we get a chance to meet. Your DX and hers are similar.
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