2013 Survivors!!!
Comments
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Wow scorchy! I got chills reading your post :-). So happy for you!
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Scottie- some would say I'm a poet. Haha I love hearing great news like that.
Iatiger- yes some days it's a plus. Normally we have older dr's in the back reading films. Apparently yesterday we had another cute one and I missed him!0 -
YAAAYYYY Scorchy!!!!!! Way to go!!!!!!
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I'm pretty new here and I come here tonight desperate, as many of you probably are. I would like some opinions and ideas and thoughts..... I was diagnosed IDC by a biopsy on Jan. 29. I got out of my small town and went to "THE" hosp 60 miles away for top of the line care. I've been in tests since, 3 days a week sometimes... including an unecessary vaginal ultrasound by a pissed off tec. They were all sunshine and roses the fist time I saw the doctors, the second time they said 6 MONTHS of chemo BEFORe they would remove my tumor. I don't think I can accept this. I live alone. I do not have family. I do not have friends that can stay with me a day or two after each treatment for 6 months. I feel its too agressive. He wont operate without the chemo first. I have strong reason to believe he is still focusing on his insistence that I have reconstruction, because I am "Young and pretty" he says... I have from the beginning had no interest in reconstruction. My bone scan is clear. Right breast is all clear. Tumor is close to skin (5mm) of left breast and is 2.8 cm. My breasts are rather small, barely B. Mast. was no surprise and I have acceptance of that. I am HER2 neg and prog/estrogen positve strongly. They have already said that after 6 months of strinking tumor, I have to have uni mast, radiation, and 10 years of estrogen blocker type med, tamoxifen I think. Ideas? I am desperate to get 2nd opinon and would appreciate ideas on that too. Thank you sisters.
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46 and single- first of all hugs! Sorry you have to be here with us. So I was not married and I don't know you situation but I felt the same way about help but this is the time to ask if you need it.
So six months of chemo? Did the give you an idea what type of treatment? I see you are her - so that is not herception? I was stage III with lymph node involvement. But I decided to do chemo first and I am glad that I made that choice for myself because I got to see how my tumors reacted to the chemo. But that is me. Is he suggestion rads as well?
For me in the beginning it is so over welhming and maybe you could try and have someone you trust come with you to your appointments as it helps a lot to have a second set of ears.
The American cancer society had patient navigators to help you with rides etc if needed. Check with them.
PM if I can help or maybe we can talk on the phone with you.
We all understand how hard this can be especially when first dianosed. I will let the other girls give you their advice as well.0 -
Scorchy- that is the best dam news I have heard this year! Awesome!
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scorchy - reading your post made me tear up with happiness. So glad you got some good news. Yeah!!!
46andsingle - sorry you are here and struggling with confusing and tough decisions. I had no choice about mastectomy on my cancerous side - there was too much to allow for lumpectomy only (even my nipple had cancer!). I personally opted to do a bmx. For me it felt like the right decision. I also opted for reconstruction with expanders. I asked my surgeon about chemo before vs after. My sense is that because I had opted for bmx, there was no need to attempt shrinkage via chemo first. I think she felt she could get all the cancer out via surgery without chemo shrinkage first. So we went for bmx first. Thankfully she managed to get everything out during surgery. But thanks to my 6 positive nodes, I had the pleasure of f/u chemo and am now in rads. You should make a list of questions and concerns and ask to speak to the surgeon again. This is your body and ultimately your decision. The dr's should be there to guide you about what is medically best for you and help you answer all your questions. If you don't like the dr and you have other choices there, a 2nd opinion can't hurt. I'm sure lots of others will chime in with their thoughts for you. Just remember - whatever decision you make will be the right one for you. There is no right or wrong answer. These are hard choices we have to make, and they are very personal to each of us. We are here for you. Good luck!!!
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For you scorchy - the best fucking excellent news I have heard for eons.
46and: sorry you are here - hugs. I hope you can get some 'expert' support from the American Cancer Society as mcook advised. I did chemo first to shrink my tumour and it worked. then I had a UMX and rads... happily dancing with NED since August. In the meantime you will find all the support, love and comfort here. Hugs XX
chrisrenee: hilarious story - so happy that we dont lose our humour along with the girls
another busy day at work... seems that's the way its going to be... still Friday tomorrow then the weekend.
Hugs and love to all xxxx
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Scorchy I was thinking of you today and what do I see but your post first thing tonight. Yes, good news!
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Scortchy that is fantastic!!!!! Way to kick butt!!!
46andsingle, I had neo chemo due to a large tumour and small breasts.
Neo chemo is done (so I was told lol) to shrink tumour, to get it away from chest wall, to kill any cells that are wandering thru your system and to be able to save as much tissue as possible. I know you are having mx, I did too but I was able to have skin sparing mx with immediate recon because of the pre-op chemo.
You don't say where you are but the cancer society is a wonderful place to find help with transportation (if you can't get to and from appts), hospice and home care. Here it's mostly all free except the hospice which is about $15 a night. And quite honestly the chemo was really not that bad as long as you take the pre meds they give you. It's not like it used to be, a lot of people continue working thru it. I painted 3 rooms in my house lol. The taxol pain was the worst, but even that the pain meds they give you help tremendously. I didn't need or want anyone to stay with me after treatments. I found any side effects usually started the day after and only lasted a day or two. I drove myself a few times and I live an hour away from my cancer center.
I understand your emotions and if you feel you want or need a second opinion you should absolutely get one. I'm not sure about the length of treatment, I was dose-dense (every2weeks instead of every 3) for 8 sessions and that seems to be the norm. Our dx seem to be similar except in size and I'm only guessing but I would think the treatment wouldn't be that different. I was actually dx initially as stage III LOCALLY ADVANCED, the neo chemo changed that for me.
Please feel free to pm me if you like and know that this group is amazing!! I'm a relative newbie too, and I've received more information here that anywhere. The support is awesome and there is even some laughs.... I know laughter seems unlikely now, but sometimes it helps. Sending warm fuzzy hugs and tons of strength!!!0 -
Scorchy - laughed hard and hearty at your post - Hallmark one. So very true. Really ???
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Lol@tazzy!!! That is too funny!!! I have to tell you, my gf had the most loveable cat, pure black ( so black it looked blue!) and he was gorgeous. His name was Tazzy. Lol, unfortunately he passed last yr at the ripe old age of 17!!!
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As Joanne said on my FB page this is the new BC enjoy:
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ramols-- thank you so much! I came in with my notebook of questions I had come up with and my surgeon actually took it away, "You don't need that!' and stuck it on the table behind him. Once time during their (as they called in more people to bombard me) 50 mins. I got the nerve to take it back so I could actually make notes, keep my head straight and remember my original questions. Again, he actually took it away. I might add he was not examining me. Lumpect was never considered for me, as tumor is 2.8 and breast is barely B. HE IS THE ONLY way who has pushed skin sparring and recon. I still wonder if his decisions aren't based on that.... This is too aggressive for me. I want a uni mast and then see where I stand. If chemo is my ONLY HOPE then, I'll have to decide about it. It seems insane to me to have 6 months of chemo FIRST. He won't let me ask questions he interupts me. What do you think of all this?
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Shianne, Thank you for sharing!! It helps!!! I don't understand why he wants to do get it down pre-surgery when I'm not interested in recon or skin sparring. He is, but I want a smooth flat area and to later down the line get a very pretty tattoo there. Chemo upsets me so much more than life without a boob. That's just me. Your chemo story is sooo encouraging!! The women at my hosp said the same thing. That they worked, took care of their kids, etc. Its just hard for me to believe. Are you ages younger than me? (;)
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46andsingle I have been reading your posts and have to comment. Any chance of a second opinion? When I read that he took away your notebook I got pretty upset. We are encouraged to write down questions and in fact bring someone else with the notebook and to make sure our questions are answered. This is regardless of the course of action.
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hahahaha,, Yeah, Chrisrenee is a fucking poet!
Thanks everyone!
Happy news!!
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46andsingle ...I agree with the 2nd opinion ... What kind of surgeon is he when he takes away your note pad. That really is not acceptable.
Scorchy, since chrisrenee said it so well then I must say "ditto".
No weigh in for me this week (on record) but I did join Curves. I think it is what I need. I am so out of shape that I know that I can do this. I can buildup as my strength and stamina increases ... I am on my way!0 -
46andsingle.....I agree with everyone here that you should get a second opinion.....
I don't like the sound of your doc....pretty scary, pushy and too aggressive in my opinion.0 -
46and- I am so sorry you are hear with us, but glad you found us. I did not have to have chemo/rad, I am 35 and had a BMX 14 days after diagnosis. I just had my permanent implants placed 12/5/12. I would have to kick your PS to the curb, because he sounds like a prick, if he took my notes from me he would be picking himself up off the floor, because he would be on his ass. Make sure that you are getting your 2 cents worth of information in on this major decision. If you want a UMX get it. Don't let your surgeon be the deciding factor. My BS gave me the original option of UMX or lumpectomy. I told her neither of those were an option. I wanted a BMX, we agreed on doing delayed TE because of possible chemo/rad interactions with TE's. So all in all what I'm trying to say is be active and speak up about what YOU want.
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mariane elizabeth--- I know!!! I thought I was doing the right stuff. He made me feel devalued. ITS MY BODY! All night through my tears, I keep telling myself. I have choices. I have choices. It's my life. I really think this is all about leaving the site "pretty" to him. I want to scream. I am calling for a second opinion Monday. I absolutely MUST have at least one.
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Joe.....I know you can do it....I know a few women that did very well at curves...you go girl..💪
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Chrisrenee--- I soooo agree. Thank you so much for your thoughts. He's such an ass. He thinks he is GOD. He's not. He also doesn't have the final say on my life or my tx. Did they try to get you to take chemo? or rad? Why or why not? This guy said, "you'll have to have chemo later anyway." "once you have cancer and there's a 40 to 50% chance those nodes are positive, you have cells floating all around in your body." "you'll have to have it anyway, and radiation." This man 4 days prior, said I had the "best possible scenario for breast cancer and would live a long time. So if iits best case, why ON EARTH does he want to treat it with every single method known to man, including 10 years of tamoxifen.
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mcook--- no, not hercept, cause as you said, Yes, I'm HER2 neg. I'm really not that interested in how its reacts to chemo, I want it all off. I don't understand why he wants to do all he wants to do and he won't tell me
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46andsingle - holy crap; i wanna strangle your doc! You deserve to be heard. It sounds like you come from a pretty rural area with limited choices, but if you can find a second opinion - get it. We have to be comfortable with our health care providers in a cancer situation. We put our lives in their hands - literally! The least they can do is hear out our questions and attempt to answer them with some compassion!!! Sorry, but i hate hearing that people have experiences like this. I feel very fortunate that I had the docs and care that I got and can't imagine how I would have felt if my surgeon had taken away my notepad of questions. Please - I had three other people in the room with me during my initial consult. It is so much information to take in at the beginning when our heads are swirling to begin with. Sorry for my rant... I'll say this too - don't let chemo scare you. I did dose dense ACT - every other week, 4 doses of adriamycin and cytoxen, followed by 4 doses of taxol. I kept working the whole time and continued to be the best mom I could be to my two little guys - age 2 1/2 and 5. They've come a long way these days with the meds they give you to help manage the side effects. Its not fun by any stretch of the imagination - but its doable. We'll all be here to hold your hand. Good luck. And feel free to PM me if you want to chat.
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Thank you everyone for your kind words. I was beginning to feel crazy (er!) I'm not used to someone behaving that way to me. Talking OVER me, not answering my questions. It's not okay and I knew it wasn't and him taking my notebook seemed outrageous to me, and I'm just so relieved to hear that y'all thought so too.
Tazzy--what was their reason for shrinking you first?
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46andsingle, absolutely kick this guy ( I won't say dr, because to me that's not a dr) to the curb. I think I would have kicked him in the testicles had he taken my notebook away lol. Yes, it is your body therefore your decision. But, at the same time please, please, please don't close your mind to all the treatments because of his snotty attitude. I completely understand how you feel, I felt the same about rads for some reason. I DID NOT want radiation. At all. I was resistant and did not understand why I had to have it if I'd had neo chemo AND a mx?!? But in the end I had a BS,PS,MO, and a RO all patiently and repetitively explain the reasons. Not to mention all the people on these threads give me their experiences. I decided that it was totally in my best interest to go with rads (I start this Tuesday)
Ps... The tamoxifen for 10 yrs is a new study that just found the results are more promising but it's not widely put into place yet. I think 5 yrs is the general.
Again, it is 100% your decision, but you need a dr that has compassion, integrity, warmth and kindness. This is a horrible time, the stress is overwhelming and all the information that is being thrown at us is mountainous!!! The questions we think of are in the thousands (and we may even ask the same one thousands of times) and we deserve a doctor with patients. (Pun intended) if you had that you may feel differently. Also, don't let any dr rush you into making a decision. I would get in contact with cancer society for sure, they will have an advocate that you may be able to take with you to appts for support. At the very least they should be made aware of this mans lack of tact.
Good luck and please keep posting!!! HUGS!!!!
And btw I'm 43, you had asked if we were about the same ages.0 -
46and- No chemo/rad was not an option for me. I did not have any node involvement as well as my Oncotype score was very low 7% of recurrence in 7 yrs. Once you have your surgery (hopefully UMX as you want), you will be referred to an Oncologist who will hopefully order the Oncotype for your removed tissue. The Oncotype test tells you what your chance of recurrence is in 7 yrs. I would strongly suggest a 2nd opinion. You may want to call a local hospital and check and see if they have a Physcian Referral line and see if there is someone else you may want to see that is covered under your insurance. I was very fortunate that I have a wonderful female BS that specializes in BREASTS. Then once you have found a BS check with him/her to see who they would use if it were them or their spouses. My BS gave me her referral but he was not on my insurance policy. I found one PS but he didn't practice at a network hospital. I was very lucky to find my current PS, HE is amazing and listened to me and answered ALL my stupid questions. I think finding someone who you feel comfortable with is the most important thing. During this time we want someone to hold our hands and tell us everything will be ok and that we are going to get through this. I knew that I would never be the same as I was before, but it helps to know that I look decent in my shirts again.
Scorch- I'm trying to hone my writing skills. Do you think I can publish a novel with my current skills?
Joanne- congrats on joining curves. The weight will drop off soon.
Tazzy- trying not to lose my sense of humor. Every time I saw this radiologist today I would giggle and my coworker kept looking at his ass.
Oh Juneau!!! Where are you? Haven't heard from you today.
My hospital is doing a Relay for Life in April, I am thinking about getting a team together. This scares me a ton. Why I'm not sure, it just does. I was talking to my co-worker and she said that maybe with me doing this I can try to deal with my depression that seems to have taken over. Just me thinking about it the other day had me blubbering like an idiot. I am almost 3 months away from my diagnosis anniversary and it still kicks me in the stomach like it was yesterday. Does it ever get better? Have any of you gone to a Psychologist regarding the stress and diagnosis of BC? I'm curious if I might need to see one of if the Psychologist would just think I'm petty and stupid because I can't "get over it". Thoughts anyone?
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46andsingle, The best thing you can do is get another opinion. This doc is not hearing you at all. chemo is often given before surgery to shrink the tumour so that they can get clean margins during surgery. Maybe your tumour sits in a place that's too close for comfort, hence the chemo first. My tumour was 1.8 cm, and it sat behind the nipple, so lumpectomy was not an option because my breasts are small, and there would be nothing left after the lumpectomy - lol. So I had a UMX and SNB with tissue expander placed. Then I had chemo and rads afterwards. If you don't want any reconstruction, it is YOUR CHOICE. This doc does not seem to get that at all. Chemo is a systemic treatment that is given to kill any rogue cells that may have escaped from the breast via lymph or blood, and may cause metasteses elsewhere in your body. It does not really matter whether you have a lumpectomy or a mastectomy. If you have nodal involvement, chemo is a given in most cases.
Chrisrenee, organizing a team for the Relay for Life is an excellent idea. Your coworker has a good point that it will help draw your focus away from bc, and help you to heal psychologically. The more we direct our attention away from ourselves, and start focussing more on helping others, the sooner we forget our own sorrows, and our own trials and troubles somehow become less important. At least that's my experience.
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I keep thinking of things lol
I know it doesn't make sense at the moment about chemo if the breast is gone but the thing with chemo is it treats the whole body. Did they do any biopsy on nodes? Or ultra sounds, MRI? Honestly if its only 2cm I can't see why they'd need to shrink it first either but I'm not a doc. I mean mine was 7 cm AFTER chemo lol it had to be shrunk!! I'm barely a B as well.
As ramols said, don't let chemo scare you off, not everyone needs it and maybe in the end you won't either but it is doable. You sound like a strong lady, you will breeze thru if you do0
