Why was I stronger DURING treatment than I am now?
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For the record, the only risk factor I had was my period at 11. I am pretty tough and can't see myself having an overload of estrogen :-). I was 46 and about a year into peri-menopause when everything began. No family history, exercised and fit and other than eating probably too much soy protein isolate, I have no clue why it happened to me.
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I did have fibroids too.
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I went through menstruation and menopause at typical ages, and I've never been overweight (and was underweight until I was in my 30s), but I was never pregnant. So I guess there could be some overexposure to estrogen over the years. I was thinking you meant that the levels overall were higher for us on a regular basis, but all the factors mentioned could expose us to more estrogen in the long term.
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Hello All . . . well, I haven't been on the boards in a VERY VERY long time. Well over a year infact. I was diagnosed in January 2012. Bilateral mastectomy in April 2012, and reconstructive surgery in October 2012. During that time, while it was no cake-walk by any means, I was not a "basket case" at all. Everyone kept telling me how strong I was, and I was! Now however, I am a full fledged "basket case". Crying all the time. Crazy moody. And drinking far too much wine. It numbs the pain. I am so unhappy all the time, and just can't shake it.
I'm sorry that I did not read all the posts here . . . I just gravitated to the "heading" . . . and decided to jump in . . .
I will go back and read some stuff now . . . but knowing that there are 1000+ posts here must mean I'm not the only one.
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VeganGal...you are not the only one by a long shot. As you go back and read the posts you'll discover people dealing with mood swings as well as fatigue, pain, and other issues. I hope joining us here brings you some comfort and insight.
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Thank you cfdr . . . I have felt like such a "freak" . . . and if I have one more person tell me how lucky I am not to have cancer anymore, I may reach out and punch them!!!!!!
I have been reading through the posts . . . and can relate so much . . .
This is truly the worst I've felt in 19 months . . . I keep expecting myself to snap out of it . . . but I have not been able to . . .
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Welcome to you VeganGal. I sure felt like you are feeling when I found this thread and felt the same relief to know I was not alone. It turns out, we are soooo not alone. I hear ya. If one more person says what a gift it is to get cancer.....bang.. pow...to the moon Alice. (from the Jackie Gleason Show in case you are younger than 50). I can tell you that it does get better. For me, it was slowly but surely... and I "get" the glass or 2 of wine thing. I still have my down days and it usually happens when I've given too much time to others or accept invitations when I know in my heart I'd rather be alone or with someone else. In other words, for me, it has been a real lesson to learn what I need physically and emotionally and then, without hesitation, give that to myself. ((hugs)) You have found a wonderful group of ladies.
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Thank you Purl51. I think I really "need" you ladies more than I knew . . . I'm not sure why I went off the boards . . . but I am really really happy to be back. I've now read a lot of your posts . . . and shed a few tears . . . good tears that is. And I'm not quite 50 . . . but I certainly know Jackie Gleason. Funny:-)
I keep waiting for "better" . . . but I haven't seen it yet . . . I'm gonna keep looking . . .
How many of you done therapy? Has it helped?
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VeganGal - you are so not alone in "this." It is all so scary and the fear of the unknown is so much harder now that we have increased probabilities. I also have my down days. I was diagnosed in Sept. 2011, chemo first, BM/2012, radiation then I just had my Diep in March of this year. I we are all just think we are trying to get our lives back. So much easier said than done!
How long have you been vegan? I've been mostly plant based for almost a year and I feel great!!!!
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Hi Goodie. I so agree with everything you have said. I too keep trying to get my life back . . . and have not been able to do so. Super frustrating . . .
I've been a vegan for over 25 years. Basically since my late teens . . . and it was definately not "common" back then . . . today it is so much easier. So many alternatives. It is so mainstream. It is great!!! If there is anything I can help with, or any info I can share with you, it would be my pleasure.
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I'm in therapy and can't say that it has helped. When it comes to BC, this board is the help. Nothing compares to talking to people who know.
Still, I go and try to talk things out mostly about my husband. This week my husband is coming but I hold little hope.
We've been married over 40 years and all I remember is heartache.
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I just found this thread and have read through a lot iof the post. I am 3 weeks post treatment, 2 months into tamoxifin and I am exhausted. I have a physically demanding, seasonal business that started for the season the same week as my diagnosis. I worked through surgery, worked through the draining chemo/ no chemo discussion, worked through 35 rads in the middle of my work day and felt pretty good! Now .. Forget it! I have started a PT program to build my upper body strength back up. I was always a mindful, healthy eater but I am going into Dana Farber to see a nutrionist to see what I need to do to get some energy. I am doubting every thing I did pre BC .. What did I do wrong?
A few cocktails here and there would help with living life normally but this whole alcohol/ breast cancer thing is a bummer. 1 glass of wine sometimes doesn't cut it , especially after a full week of work. That could be a whole other discussion!
I miss my very high energy life. I feel like a slug. I see all my Drs. In a couple of weeks, am trying to work on feeling physically better. Glad to know I am not alone with this exhaustion. I have the opportunity to slow my business down for a few weeks and that is what I am doing. I am lucky I can do that .
Thanks for all the posts! Always helpful!0 -
Wow 25 years is awesome! My nephew is vegan so I've been aware of it for a few years but I really enjoy my plant based eating in the past year. Any info you have or suggestions would great!
I know I "need" this thread more than I even know if that makes sense. No one else understands what we are feeling at all. I actually rarely post on threads but I check in on "my" threads daily pretty much since I've started chemo. My family is awesome but they really don't understand.
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Timbuktu,
I am sorry for your heartache, 40 years is such a long time to feel that way. You are such a lovely lady, you have been so kind to all suffering on here.
I do hope things can get better for you.
WS x
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winter, thank you. YOU are so kind. I get as much if not more than I give. I'm so grateful to you and all of the rest of the kind people here! thanks again!
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Timbuktu - thank you for sharing. I've been avoiding therapy b/c I just don't want to talk to anyone who hasn't "been there". My DH keeps wanting me to go . . . but I feel like it will be a colosal waste of time . . . as Goodie says . . . it might be "this" that I need . . .
Lenn12ka - I hear ya! I was literally in the best physical shape of my life when I got the dx. Now, I've put on weight and am in the worst physcial shape of my life. Exhausted all the time. Can't seem to sleep enough. Can't find my way out.
Goodie - here are 3 amazing web sites full of wonderful vegan recipes: www.fatfreevegan.com; www.theppk.com; and www.plantpoweredkitchen.com. These sites are full of everything from chocolate cake and cookies, to learning how to cook things that you may not be familiar with like tempeh, to how to make creamy salad dressings (using cashews)! Literally "soup to nuts".
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Welcome Lenn.
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Hello all...a special hello to the new gals on here. I've been out of town with the family and am just getting caught up on how everyone is doing.
To the new gals...welcome. You have found a beautiful place on this discussion board. It served as my group therapy on countless occasions (and still does very often). I encourage you to read the early posts in particular, especially if you are at the point where you are saying, "what just happened and why did I handle it better when I was going through it?" Some of our earliest posts talk a lot about how the days/months/years after a bc diagnosis and treatment are like dealing with PTSD. It is so true. We also had a lot of discussions early on there about how we felt like warriors when we were going through the worst of it, but that our warrior spirit went away when we were done. Unfortunately, that coincides with when everyone else in the world thinks, "oh, good, she's done with treatment...she must be fine now". Oh boy, are they wrong!!! I have made it my personal mission to disabuse people of this idea. Seriously, to anyone who has a relative or friend going through this, I pull them aside and say, "hey, when it's all over is when the REAL work of healing begins...don't forget that...stick by her because that is when she will need support more than ever! I'm sure you don't get that, but it's true. Trust me." It's shocking to people. Of course, people who haven't been through it will never completely get it, but that's what this discussion thread is here for.
Wintersocks...how are you? What's happening with the test results?
Purl...I got the Jackie Gleason reference and I'm 45...loved that show and loved your post!
Lenn13ka...I think we are twins. Looks like we were similarly situated in our diagnosis. Did you do chemo.?
Timbuktu...sending you a special hug. You are immensely helpful on here to all of us.
I'm sending everyone good vibes. Love and prayers to each and every one one of you, particularly those going throug a rough patch. Hang in there...it gets better. It truly ebbs and flows, but I am 2 years out and I have more good days than bad. I hope that helps at least a little.
Rabbit
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Thanks for the welcome everyone. I have read through a lot of the post and have gotten some great info. Rabbit... No I didn't do chemo. The beginning of this "journey" was very messy for me. I was diagnosed the first week of the start of my seasonal business. I went to the local cancer center and was basically told lumpectomy, rads no chemo.. Stage 1 grade 1 Keep going with your season... Big mistake! Wish i knew then what i know now about breast cancer!!!
Final biopsy after lumpectomy was multifical mixed tumor , extensive LVI and node positive. Now they want to do chemo and I am deep into my season and can't turn back. I have employees, clients , projects... A landscape design business. Anyways, I had an Oncotype dx-17 and got a second opinion at Dana Farber and they said it was ok to skip chemo ( I am at a MGH facility and got a 2/2 split. ) Anyways, that whole ordeal, while I was running a demanding business during prime time was brutal. Rads was pretty easy for me. That is why I am surprised I was hit so hard after.
I am thinking it is the tamoxifin kicking in after 2 months or post rad exhaustion? I started working with a PT to get back in shape but I am not sure how fast to push it? Everything hurts and my arm gets heavy. I have to use my energy and physical strength for work and then I am DONE.
Also, With all the varying opinions I got on my treatment I feel like I need to keep total tabs on everything. I still don't trust my original doctors %100 so I have another Dr. At Dana Farber who I am using as a consultant.
I don't want to be a warrior.. Thanks for encouragement everyone!0 -
hello friends,
And welcome to those joing us. this is a great place to be, lots of kindness and encouragement!
Rabbit, hi to you and thanks for asking bout my results. I had the MRI yesterday, afterwards The Prof (a lovely lady) explained to me that the cyst is so full of blood that she could not get proper pics. So effectively I am no further on. She merely reiterated that It 'would have to come out'. The scan was going to be reported last night, so now I just have to wait I guess.
When I got home there was a copy letter to me from my BS, encouraging to read after my last check I am NED, but in the next bit: 'G------ is aware that she is at future risk of chest wall recurrence'. Well, so yesterday was a bad bad day! - felt plunged back into the whole thing again....... I can't believe it will ever end.
Rabbit, I hope you enjoyed your time with the family?
Lenn13ka - you sound such a busy woman. I don't want to be a warrior either!
Sitting here with Horace my cat (he is such a comfort) feeling mentally and emotionally drained. Need another holiday badly. I think what I mean is I want to run away from it all.
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We've all been there winter. Try to stay in the moment if at all possible.
Aren't we all at risk for recurrence? Sounds as though they just had to put that in the record.
Maybe it's a way of covering themselves. I know a lot of drs make things sound worse than they are.
Then they can relieve you and tell you good news. But if they don't make it sound bad first and something
goes wrong you get upset with them.
Unless and until they say there is a recurrence...there is no recurrence.
Concentrate on NED. That sounds great to me!
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Lenn, for what it's worth, my sig line says it all. Every step of the way it was good news, bad news. It becomes an emotional roller coaster when the doctors (at least mine) are all happy/optimistic and then pull the rug out. I had a hard time trusting any of my doctors and even became a bit paranoid after treatment as some of my older posts may show. I was a Oncotype 22 with young kids so I couldn't avoid chemo (although I tried). Ultimately, we are responsible for the decisions we make. The doctors all get to go home at night to their own crap and our physical and mental health aren't first and foremost in their minds.
I even recall my MO brushing me off when I was at the end of my rope mentally. The next appointment, he says, "Oh, I've been thinking about you and had a post-it on my computer to check on you." Really??? No one from his office ever called after I revealed how distraught I was. Post-it my ass. I can only laugh in retrospect because many of these docs give us reasons not to have 100% faith in them. I have light lymphedema and two doctors told me it would clear up or get better. Once again... Really??? It is what it is and I had to find a PT, get my insurance to pay for a sleeve for flying, etc. One doctor said grade 1 to me and the other said grade 2. I put grade 1 in my sig line in hopes that will bring better luck :-).
Anyway, welcome. We've all been where you are. This thread gave a lot of us the chance to deal with the depression, PTSD or just plain old pissed offness! I'm 2 years out from my surgery date of 8/10/11 which is when my doc said I am cancer free. I'm back to my old self and I feel the whole thing about a "new normal" is bull. I'm 2 years older and just a bit more physically beaten up, but I'm still me.
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Rockym - totally agree that the Doctors are giving me reason to not have faith! I am at a facility that promotes the " team" approach . During a talk with my RO about going on Tam during rads rather than waiting he asked who my Mo was. She was in the office 2 doors down. Did my team not talk about my diagnosis together? Did he not base his rad dose on the pathology of the tumor and maybe discuss it with my Mo. Guess not.
Same as you about the lymphodema. They make it like it is no big deal! I have a cord running down my ribs ,, couldn't be from radiation they say....
Thanks for letting me rant!! I am definately in the general pissed off phase.
Winter- I have the winters off and my life is very different ..of course this whole ordeal is happening while I am pounding my body daily!
Can't wait unti this season ends. I guess no time is a good time to go through this as you all know.
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Lenn, read up on those cords. They are a SOB, but they do go away. I used to stretch mine often until it subsided. Mine ran from my scar under my arm to my wrist. It was bizarre and had strange branches when it got to my forearm. The RO said... not from rads, BS said... not from surgery... MO pretended not to know what it was... WTF??
I just wanted someone to tell me what it was and how to deal with it. Eventually the BS said oh ya, that was/is lymphedema. No shit. They all want you to like them and not to be ticked that treatment could cause other issues. If you read back in this thread, I decided to skip the Tamoxifen. I had many reasons, but in the end I picked what was best for my quality of life.
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I have a lump under my scar and went to 4 different drs and got 4 different explanations. I finally chose the one I liked best, the one that did not involve further cancer or surgery! lol
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Tim I came here cuz I saw u'r name hahaha that sounds like u but how did u get 4 DIFFERENT answers geeeeeze these Drs. will drive u to drink--Hmmm sounds good.
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Hey girls - hope you don't mind if I jump in on the rant. Don't even get me started about 'team approach'. That whole philosophy gave me great comfort at the beginning, when I thought I had people looking after me. Then I realized they weren't communicating and that there was no captain on the ship - and the only person that could take control was me. And I really had my work cut out for me - it was a full time job! I was bilateral, and after two lumpectomies, chemo, and rads, I had a BMX with immediate DIEP reconstruction last month. And, my breast surgeon, who has been with me since the beginning, didin't show up! Apparently there was a massive scheduling f*ck up, and while the rest of the team was sharpening their knives, he was out of the country.
When I finally confronted him a few weeks ago, he apologized, but then said I was lucky to have had two surgeons who were able to fill in at the very last second - and that that this is the beauty of the team approach. I told him I didn't have a 'team'of Breast Surgeons - I've had only one for the last two years, and he didn't show up. I still have great trust in my PS, so at least I'm not totally faithless in the entire system.
Anyway - I know that this is not what the thread is all about, but I decided to get a little venting in. I was a frequent reader/contributor last summer when I was becoming completely unravelled and didn't know where to turn. I cried at everything, and felt completely alienated from the rest of the world. It was so unexpected. My treatment was over (except for surgery) my hair was back, my prognosis was excellent, and I should have been having the best summer of my life. But I was so miserable. My new body and mind weren't fitting well into my old life. Talking to the women here was a life saver.
For you new girls - these feelings are pretty normal. Some have compared it to Post Traumatic Stress Disorder which makes total sense to me. Everybody sees you getting back to your routine, but for us, there's nothing normal about it, and nothing feels right. It's all off. For me things are much better these days, and while I still am rebuilding, my roots are feeling solid.
However, I still bristle when someone says to me 'It must be nice to have everything back to normal'. They have no idea what they're talking about. There is no normal. And getting to the place that I am has taken so much work! But nobody wants to hear about that - nobody wants to hear about the invisible healing. The icing on a cake is when people say to me, 'You're so lucky. A boob job AND a tummy tuck!' Seriously?
It's just a reminder of what different worlds we live in.
Janet
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cami, my surgeon said it was necrosis, don't worry. My onco said "it doesn't look like anything". I went to a local onco who said it had to come out, Then a local sugeon pointed out that I had the same hardness under the other breast! lol Why didn't anyone else think to feel the other breast? He said large breasted women develop fibrous tissue under neath the breast, or maybe he said ligaments. Whatever, as long as it's not cancer I don't care what it is!!!
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Winter i am told very high risk of recurrence all round every time i speak to an Onc but i am a cussed stubborn thing and will prove them wrong........and truly i dont believe i am, i just think they almost try and scare us to make us comply with meds that make us feel yuk, and i scared them by refusing chemo.....
Hugs to you, i m on countdown to surgery and now with toothache...!0 -
So sorry you are going through this Lily. (((lily)))
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