April will be my turn, can we share hugs?
Comments
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Thanks guys, yes my drains are gone! Yay! Still haven't made it to my side yet but I start physical therapy tomorrow so that should help.
Congrats everyone, we've made it past surgery! Hope everyone is well. Thank goodness for these forums, now I have lots of questions regarding the next phase of treatment. thank you all for sharing.
I hope this board continues to give you guidance, strength and hope. Even just a place to vent or cry, we are all here for each other.
Hugs to all -
I'm so glad you go them out!!! Yes we did. yay us! Radiation for you too? If so, see you in that forum lol.
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Hi idesim, my MO says I need 7 weeks of rads. I just posted my concerns on the forum do I really need rads. I would love it if you checked it out and hopefully give me some insite, I'm really at odds. See my dr tomorrow.
What has your dr told you?
Glad you are doing well, with fellow warriors like you we will all get through this a little easier. -
Yes we will
Well, my pathology showed several microscopic areas, so because it was elsewhere than the original tumor in the breast and also there was again a microscopic presence in one of my lymphnodes, I am having radiation. However, prior to that, I was under the impression that because of the lynph node involvement, and the agressive nature of my cancer (the triple positive perhaps) It was always intended that I have radiation. -
Thank you bella42771 for sharing your experience and sending your well wishes. I was discharged the following day after surgery, last Wednesday. I'm recuperating from home now. A home care nurse came to visit for the past three days to check on my surgical wound and to make sure things are going well... It's a wonderful service and I feel being cared for.
While it's very uncomfortable having so many things attached to the body at this time, I feel I'm almost out of the hardest hurdles of this journey... Just hoping for good news with the pathology report.
I'm so glad we can have this forum where we can share our fears, pains, anxieties and triumphs. Thank you all for your support! Hope everyone is doing well too after their surgery.
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Welcome Mafe! Idesim and Keepswimming and Peggy, I've missed you guys. Missed all of you! Sorry I have not been on the boards. I have not had a smooth time of it. My 'excisional biopsy' was actually the removal of an 11 cm mass, and they went to the chest wall. Third time in the breast -- it's nearly half gone. I'm up right now because it hurts. I'm about three weeks out. The people here say it is benign. Which is good. But due to the extremely rare cancer I had before, the BS in NJ still has concerns.
My BS here just spoke with my 'real' BS in NJ on Thursday, and then the next day I get a message saying I'm going to have an MRI in a week. Post-surgery. Anyone ever had one of these? Called the BSs office Friday, asking for an explanation, but no answer yet.
So glad everyone is doing well. Thinking about everyone. You are all so brave! XXX
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Bobogirl, I'm so sorry you are having a rough go. I've had a few setbacks and my fighting spirit has been tested. Thank you for sharing, all our brave sisters will help us get through this. Hope you get some answers soon, sending hugs,
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Hi keepswimming and ldesim, my MO mentioned during my last check-up after chemo and before surgery that I'll need radiation too and 10 years of hormone therapy (Tamoxifen). I'd like to do away with rad as well but I guess it'll depend on the pathology report.
bobogirl, sorry to hear about you not having a smooth time after your excisional biopsy. I'm glad you're out of it now. We go through rough times but there's always sunshine at the end. Hope you'll find better answers from your BS. I had MRI before chemo. My MO thinks it's good to have a better picture, but my BS thinks it produces false images at the same time. She relies on ultrasound and/or mammo I think, biopsy and pathology reports. Differences in opinion sometimes makes it hard for us too. For me, more tests means better information to help decide with treatment plan and options.
Take care everyone! Lots of hugs to all...
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Bobogirl, I'm confused.. aren't you supposed to have a BMX? It's awful you have to go through all these procedures. I've had so many damn test since this has all begun, I'm not sure on the MRI.
Mafe, once those drains come out, life is beautiful! Well that and not having to sleep on your back.. at least for me.. I struggled with that one. I hope you get to skp the rads.. I start on the 14th and am dreading it... but I just look at it as one more step to getting past this. I have the Tamoxifen for 10 years as well. I was swelling up so much after the last rounds of chemo that I didn't start taking it as one of the side effects can be blood clots. Now I'm 2 months out from that and still havent taken it.. i just don't like the sounds of it.
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ldesim, thanks for the assurance. I can't wait for the drains and ace bandage to come out. It's very uncomfortable being wrapped like a 'burrito' and having tubes attached to your body, but I'm taking things one day at a time.
Yeah, rad and hormone therapies sound bad but I do hope it'll prevent from having recurrence... so many uncertainties... but we all can get past this.
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Mafe and Idesim - Just my $.02 worth about the rads and hormonal therapy. I went through both (am currently on the hormonal therapy). You can read lots of bad stuff that happened to women who went through either of them, or both. But the MANY women who went through and had little or no problem are not sticking around to post. Always remember that.
I had rads in 9-10/09. After my TCH (taxotere, carboplatin, herception) it was A BREEZE. No problems at all. I used Calendula gel on my skin but will admit I was not religious about it, and I had no problems.
I started Tamoxifen in 10/09. I was TERRIFIED about taking it - i was absolutely afraid of 'becoming a monster' based on some things I had read about extreme mood changes. I knew my husband could never stand that and was afraid our entire marriage would crumble. In retrospect, I can laugh at myself about it, but at the time it was NOT FUNNY. I took my poor DH to the cancer therapist to PRACTICE what we would do if I became irritable and/or cranky. I am never that way and I knew that he would just not handle it well. So the therapist (who also thought i was a little nuts about it) went through this whole practice script with us- "Ok now you say Do you need a hug?" and now you say "Yes"....
I started the tamox and ....NOTHING happened. Well nothing mood related anyway. I DID gain some weight quickly - wish I had known to be more careful with what I ate. And I had some vaginal discharge (sorry if TMI) for the first few months but it went away after that. I had some hot flashes but they were manageable.
I was on the Tamox for 3 years and started spotting. They were concerned it was uterine cancer or pre cancer and I had a D&C. Turns out it wasn't and they figured it was a one time thing. But to be safe, I went off the Tamox and started an AI (arimidex). No noticeable problems with that either. I spotted a few more months and finally a few weeks ago had a hysterectomy.Am continuing on the AI and plan to keep doing so as long as possible.
My GOAL is to remain cancer free. If tamox or the AI increase my chances of doing so, I will take it.
I sat with a woman during my Herceptin named Julie. She was taking Herceptin for a recurrance from a cancer she had 5 years previous. At that time, she declined the tamox because she said she had been through menopause and didn't want to face the hot flashes all over again. At her five year anniversary, mets was discovered. We sat together every three weeks for a few sessions. EVERY time we talked she expressed her regrets about not taking the hormonal. It really made a huge impression on me. And then, at Christmas, when I brought cookies to the chemo room for the nurses, I asked about her and they told me she hadn't made it.
I'm not saying this to scare anyone. Nobody knows if the cancer would have metastisized anyway,if she had taken the tamoxifen. But it is something that did happen, and it reinforced to me that i want to do EVERYTHING to keep the cancer from coming back, and not have regrets like Julie expressed to me.
This is my experience anyway. i hope some of it was helpful to some of you.
Love to all my April surgery sisters!
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AmyIsStrong, thank you for sharing your experience with rad and hormone therapies. Also for sharing Julie's sad story. I lost a beloved co-worker a few years ago, also of bc recurrence. I have to admit I'm scared thinking about recurrence, but I'm with you about doing every possible treatment out there to keep it away.
I guess we can handle the SEs, we've been through a lot already... there's nothing we can surpass... Hugs to all of you!
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AmyisStrong, thank you so much for your post.. and that is exactly it.. you read things and get the list of SE's and it just sounds like you're going to turn into an absolute nightmare.. my poor dh has been through so much I'd hate to put him through me being a raging bitch lol! The blood clots scare the crap out of me to though. But recurrence does scare me even more. I have read a couple of blogs where a couple years later.. mets.. and that scares me more than I can even begin to describe. So, I agree whateer it takes. So sad about Julie.. that must have been awful.
Mafe, so true.. we can do this and then some
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Idesim, my real BS -- in NJ -- wanted an Mx in 2008. So I've been living on borrowed time since then. With this new growth -- benign -- she is still following me, still advocating that. Basically, this extremely close watch has brought the subject up again.
However, I'm just finding out that my BS here is an extreme conservationist, and she's said she won't do the surgery "just because my other BS wants it." So that's what's happening right now. Meantime, I'm starting up another round of tests -- this week, transvaginal US, next week, MRI (?), four months from now, starting again with a mammo. Looking into having my surgery in NJ. But don't know if I can be away from my daughter for that long. In fact, don't know quite how long a traveling Mx takes!
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hi ladies!
just wanted to check in with everyone. glad to hear most of you are doing well. i've been doing well too! just found out today there will be no rads for me - so effectively, the surgery cured me
now, just the process of expanding the TE and the exchange surgery down the road. hoping to go back to work next week!bobogirl, sorry to hear you've had a rough go - sounds very confusing, with different views from different care providers. i hope things improve for you soon!
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Thank you so much Ashleigh! Thinking of you too -- hope your TE's aren't causing too much trouble. XXX
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Bobogirl, that is an annoying situation and to have to travel for something like this is just really inconvenient to say the least. I agree to her not doing surery because another BS wants it, but how about that you want it.
Ashleigh, that's fantastic news about the rads.. so glad to hear you are doing good.
i can't believe how much I was dreading April and here it has come and gone and somewhere in these forums there is a bunch of scared women huddled in a May surgery forum. We all have done so good
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Hi,
I'm just checking in....Ditto to what Ashleigh said....Doing well. No rads - "cured" by surgery. Stories about mets scare the hell out of me, though.
Glad most of you are doing well. Quick recoveries to those who are recovering and good luck to those who are facing surgery or additional treatments. Heck, good luck to us all over the next 20 + years, for no recurrences!!
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Danawp, that is great nws! I am so glad you are doing well. I know, I've stopped reading other forums or blogs as they were scaring the hell out of me.
I like that... luck for 20+ years... and hell no to recurrence!
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Danawp and Idesim, good to hear from both of you! It's great you're doing well.
I don't let mets or recurrence worry me - I figure I deal with it as it comes and I can't worry about things I can't control. We do what we can - whether it be surgery, rads or otherwise and have to have faith that everything will turn out okay. Easier said than done sometimes though, right?
Have any of you started exercising at all yet? I meant to ask my PS today, as all I've really done so far is get out walking. But I would like to start getting back to at least slightly more intense cardio, light weights, maybe even yoga? I don't know really know where to start....
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Same as you, just walking. Nothing too strenuous, doing regular housework and gardening. I can't imagine cardio or yoga would hurt.. weights not so sure.
It is either said than done, but you are absolutely right!
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Hi Ashleigh, saw my PS and MO last week (my surgery and recon took place on April 2). PS and MO gave me the okay to start exercising in the activities I used to do. Well, gentle Hatha yoga, walking the dog, and some leisurely cardio on the exercise bike was my norm three days a week.
I know I need to step up my game, especially the intensity ofvcardio and adding strength training. However, I've started by going back to my old routine and listening to my body (especially my chest) to tell me what I need to modify. I am now exercising every day. It's got to be my new normal.
I'm so excited to be through with treatment, I should take that energy and up the cardio.
I wouldn't hav started anything without the okay by my PS and another member of my treatment team.
Hope some of this is useful.
Peggy -
Hi all,
Thanks for all the recent posts, really makes me think about upcoming decisions, I will be seeing the RO on Wednesday so we will see what he says. You all sound so good, I have to admit I'm a little jealous. The meds made me sleep so much I didn't use my arms enough. Now 3 weeks out and I have to go to PT 5 days a week! I am still so incapacitated. On the good side I am responding to PT well so hope to be gardening soon!
Bobogirl, I hope you can find some peace with all the conflicting advice you are getting. Sometimes they make it so urgent you don't have time to make the right decision for you. We are here to support you, go with your heart, it will never fail you.
amylsStrong, Thanks for sharing...you bring strength and courage to all of us to keep on fighting! It's scary, but we've all come so far to give up now, see you here in 20! -
Keep swimming, how great it is for you to have sought PT. Many doctors don't make referrals to PT (my surgeon looked at me like I was crazy when I brought the topic up before surgery). He seemed sure that the pre-surgery PT session he sent me to was all that I needed without knowing anything about me except for the details of my cancer and the fact that I needed a mastectomy and was opting for a prophylactic one.
He did a good job surgically and usually has great bedside manner, but PT can prevent as well as treat BC problems that arise as a result of surgery. Good for you!
Peggy -
keepswimming, good to hear from you. sorry to hear that your recovery has taken a bit longer, but it sounds like you're taking the right steps with PT.
Idesim and PeggySull, thanks for your responses. For now, I'll continue with my walks, maybe add in some light yoga or cycling. I'll have to remember to ask my PS when I see her next about anything more intense. I'm a little nervous about running or higher intensity cardio anyway - I wonder how that will make my chest feel.
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I am out from surgery 4 weeks ago today. So today, I started the 6 weeks of rads. My chest is still so sore from the bitateral mastectomy and it is horrible keeping my arms that far over my head for half an hour. I did not have reconstruction. It was worse last week when I did my simmulation before rads, I was only 3 weeks out then. I cried it hurt so bad. Sounds like tomorrow will be another half hour, then after that it will go to 15 minutes. Having to raise my arms up that far and hold it for so long is way worse than the chemo I did from October until March! I also have a lot of swelling under my right armpit. Feels like a pocket of fluid there, hope the swelling goes down soon. I know that can be a side affect of post surgery. Kinda funny that the right side is the swollen side and no nodes were taken there and no cancer in that breast. The left side where the nodes were taken is fine with no swelling. Also the left side is the one that hurts so bad lifting my arm up. The right side although so swollen in the armpit doesn't hurt as bad. Yes I did call my BS on this and she said it was a side affect of the surgery. She is out of town for 2 wks now, so I guess if it gets worse I will have to see another Dr in her office. Hopefully my body will absorb the fluid. And yes I did exercises daily to get my range of motion back, so not sure why I am so sore and it hurts so bad to raise my arms. I still feel wore out from the chemo and surgery and have not gone back to work yet, hopefully by May 13th I will be better by then. I hear what you are saying about worrying about mets. I could drive myself crazy thinking that after all I have been though already. I try to put it out of my mind as best as I can. I have my days thats for sure. There is a Bible verse that says "He knows the way that I take, when He has tested me, I will come forth as gold." Job 23:10. I pray when we get through this treatment we will all come forth as gold! God Bless!
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Annie ~
Hang in there & good luck. So sorry you have to go through so many treatments and that you are still having so much pain from the surgery...Hoping it gets a little easier each day!! -
Thank you danawp! Yes I am hoping this soreness goes away soon...I know there are many who are way worse than me, so I need to count the blessings I have. It is easy to complain. I guess we just all want the road we were on before this journey began. We don't want to be on this road. I know I already appreciate things I didn't before and also took for granted.
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Annie, I feel so bad for you. My PT is working hard just to get my arm to where I can touch the back of my head. I dread the idea of having to try and hold them up. I too have swelling but the PT is working on that also. Have you thought about PT, it might help, mine is a lymphademia specialist and is doing a great job.
Another thing the Drs keep reminding me is I had chemo before surgery, so it will take longer to recover, my health was already compromised from chemo. So try not to compare to others recovery. It seems overwhelming at times, I hope you have support to get through the tough days. I will keep you in my thoughts.
Peggy and Ashleigh ~ thanks for your kind words and continuing support for all of us.
Good luck to everyone. -
Annie, sorry to hear about your rocky path. I think keepswimming may be right with the chemo having knocked you down a bit to start with. It can take a little while for the fluid to resorb, so I'd just keep an eye on it - as long as it's not getting bigger or more tender, I think you're safe to just watch and wait. Hopefully the radiation goes okay for you! And you're definitely right - times like this really do make you realize all the things you've taken for granted in the past. But we're stronger because of it! Hang in there
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