Not handling this well..

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  • swg
    swg Member Posts: 461
    edited October 2017

    Yes exactly. I know exactly what you mean. So tired of the "you're so strong!" "You're so brave!"

    Noooo I'm not! I'm just doing what I have to do, and anyone would in this situation!

    I also worry that if they think I'm so strong, that means they don't have to pitch in to help.

    I've had a lot of ppl say "if there's anything you need"..well, I figure I will need them when I'm coming out of surgery. I don't want to drain them this early. I hope they will be there for me. I'm single. I got no significant other to get me through this 24-7 :(

  • swg
    swg Member Posts: 461
    edited October 2017

    I can't have a lumpectomy. I have two tumors in my right breast :( One was found through an MRI and didn't show up on the mammo/US. Scary!!

  • fishingal68
    fishingal68 Member Posts: 56
    edited October 2017

    Stage2, you said what I am feeling. I wish I could tell those closest to me my deepest fears, but they are struggling with my diagnosis as it is. Thanks for posting!

  • Stage2ire
    Stage2ire Member Posts: 82
    edited October 2017

    swg, i see you have mix of dcis and idc. Sounds scary but try not to focus too much on it, its common enough. I had 9 cm total of DCIS, with multiple invasive tumours,ranging in size from 1/2mm to the largest 10mm tumour. The DCIS is in the milk ducts meaning it is not invasive. The main concern is the invasive tumour. Your doctors will base treatment plan on that. But rest assured, DCIS and IDC combined is common. Multifocal can make it more likely a mastectomy is best surgical option though.

    I had my right breast removed. Kept the left. At the moment no reconstruction plans. I'm tiny though, an A cup. It makes it easy for me get away with the imbalence. I'm not sure what I would do if I were larger. I think if your not sure give yourself time and eventually the answer will come.

  • Stage2ire
    Stage2ire Member Posts: 82
    edited October 2017

    fishingal68..yeah its hard alright. I've always been someone people relied on. And I put on a good game face. But some days I'm exhausted from trying to "be positive". Some days mental strength gets me out of bed but there are days the dinner needs cooked, clothes washed etc. People say let me know if you need anything but I think it's just something they say. I have 2 small children (4.5 and 22 months). There are people I only get the occasional message from. Its disappointing. I've done my best to be a physical and emotional support to people in the past and have not received same support. But again it goes back to individuals. Its what they are able to offer, not a reflection on you.

  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    Serious illness makes people really uncomfortable because they just don't know what to say, so often times the wrong words come out. However, unfortunately I also think that sometimes people have a morbid curiosity about other peoples troubles. Kind of reminds me of the traffic jams caused on the opposite side of the road from people slowing down to see the gore.

    Situations like this really bring to the surface the people who truly care about what's best for you, and reveals those just giving "lip service".

  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    I agree that most people don't know what to do. So if someone asks you, tell them! While I was going through my surgeries, I also had a couple of other awful things happen (one of which was a really bad house fire a few days after my lx). When I complained to my therapist that so many people were asking "what can I do?", she encouraged me to actually make a list. The list ranged from pretty small things to bigger things that would actually feel great to me if someone helped with them. It was awkward to me at first, granted. But when people asked, I said, "well, if you really do want to do something, I have a list". You'd be surprised how many people actually did want to help. They could pick something that suited them, their interests and available time. So many of them seemed grateful to be taken seriously and allowed to help me. Think about how good it feels to help someone you know and/or care about. So we take away someone else's opportunity to feel good and to feel closer to us by not allowing them to help. Just food for thought.

    Heart

  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    MTwoman - I'm new to all this - aware that my initial diagnosis and necessary treatment can still evolve and fearful that it will. Having said that, I see many of your comments on many of the other threads I've been reading and you always offer calm, excellent insight. Thank you for that. I love the idea of actually making a list.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    As a mother with three kids, probably one of the biggest helps was having people to traipse them around to their activities. I agree that lots of people really do want to help but don't want to seem pushy or know what to offer. A good friend of mine insisted on creating an online sign up for dinners for the first two weeks after my surgery. That was so awesome!


  • swg
    swg Member Posts: 461
    edited October 2017

    That's always tricky, Fishing. You want to balance reaching out to your friends when you need them, while being conscious that they're dealing with their own grief at your diagnosis because they care so much.

    Just..sucks all the way around.

  • swg
    swg Member Posts: 461
    edited October 2017

    Stage2ire, I can totally relate. I feel like, so many people I have been there for them..when my cat was dying of nasal cancer last Dec, nobody really stepped up to the plate til I basically CRIED out for help on Facebook. The day I had to have the vet come to put my cat to sleep, I was all alone. It was horrible. I was also dealing with my car having been impounded. I was so stressed out dealing with my sick cat..I got into an accident, and my registration was a few weeks late, so they impounded my car. It was awful, just trying to get it back (Philly PPA is HORRIBLE to deal wiith..cost me a fortune to get my car back, too.)

    I was so depressed that more people didn't step up to the plate for me.

  • swg
    swg Member Posts: 461
    edited October 2017

    MTWoman, that's a great idea.

    I thought about making a FB group called "Sandra's Cancer Buddies", and adding everyone who offered to help, no matter how far away.

    What do you all think about gofundmes? I considered setting up one to help with my utility bills and co-pays. I have insurance, but the co-pays really start to add up.

    I feel like people go "oh no, not this again" when they see a gofundme. I've always been so fiercely independent, I have a hard time asking people for money.

  • Lisey
    Lisey Member Posts: 1,053
    edited November 2017

    "What do you all think about gofundmes?"

    - my take: If it's a facebook friend and I can clearly see that they go to concerts, eat out, etc.. I'm pretty skeptical. I work my ass off for what I have and still live like I'm poor, though I'm not now. I don't go to concerts, fancy restaurants, or own expensive pets, and I work 60 hours a week with little time off (working tonight on Halloween in fact). I am not going to help someone whose lifestyle is spendy, nor would I help out someone who has made poor life choices to get where they landed - unless they had a course correction in mind (i.e. new career or school) I do contribute when the need is real and great and the person has never asked for money before, but it would have to be a big tragedy (I just helped a family in the death of a father who was a provider for his family).

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    swg, we are all different, and the people in our lives who want to help are also different. As to " FB group called "Sandra's Cancer Buddies", and adding everyone who offered to help, no matter how far away" I personally wouldn't do this as I don't post very private information on fb, having a hodgepodge mix of casual acquaintances, along with actual friends and old school classmates as "friends". There are folks on fb that I wouldn't share that information with, and once someone has seen it/read it, you can't take it back/make it unknown. Also, I wouldn't want someone who I did something for to post my information on a fb site. Now I know that some people are more comfortable opening their lives on social media, so that would make a difference. Sounds like I just may guard my private information a bit more than you, so I'm probably not the best one to give my opinion on that.

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited November 2017

    SWG: I just want to say that from a self care standpoint, I am glad I kept the left breast. After the surgery, I could handle all the ports myself because one side didn't hurt and I had good range of motion.

    Also, now I am glad to have one side naturally me. So the crazy biopsy on the left was worth it. It turned out I'm not a good candidate for reconstruction. I dealt with that in July. I'm okay with it now.

  • swg
    swg Member Posts: 461
    edited November 2017

    That's great..I am going to do the same thing. I'll have my right breast reconstructed--if they don't quite match, that's ok. I'm hoping maybe the surgeon would be willing to do a lumpectomy with reconstruction, even though I have 2 tumors. Right now, she doesn't think I'm a candidate for it. I want to find out why.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    swg, that happened to me. When they have to take too much tissue to obtain clean margins, from 2 different quadrants of the breast, my understanding is that it can make for a "poor cosmetic outcome". In my case, with 3 separate areas, they were also wondering if there were tiny areas of dcis in other parts of the breast that were too small to "see". They didn't really give me a choice at that point.

  • swg
    swg Member Posts: 461
    edited November 2017

    oh wow. Yeah, I can understand that. How did your surgery turn out? Did your breasts look symmetrical?

    For me, they don't have to look absolutely perfect. I know with a DIEP flap, they can get the one breast more natural looking but I'm probably not a candidate for that.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    They did! They are a little less symmetrical now, almost 15 years later, but I expect I'll have to get a new implant at some point and will get an 'update' then :)

  • swg
    swg Member Posts: 461
    edited November 2017

    Welp, I have my surgery scheduled. My BS said they can do nipple sparing for the right, which makes me happy. She also said they probably won't have to do anything to the left to make it match the right, and the plastic surgeon will do immediate reconstruction on the right.

    Bad news is..and I did not know this til today..my pathology report on my primary tumor was wrong. She said the MRI shows my primary tumor to be 2.2cm, which puts me at Stage 2 :(

    Still, I am feeling positive that my prognosis is still good.

  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    SWG - best wishes for a smooth recovery.

  • swg
    swg Member Posts: 461
    edited November 2017

    Thank you so much!

  • tbrown2
    tbrown2 Member Posts: 2
    edited December 2017

    So, I'm really not sure if this would be where I express my inner most feelings.  I am about to have a double mastectomy - and even though I should be grateful they caught it early - grateful they are offering this procedure with reconstruction - I am very upset over it all.  I feel like I am losing a part of me to have it replaced with something foreign - something that don't belong - something that I will have no feeling in - I really don't know how to process all of it - all I can do is cry - my surgery is in 18 days - I believe in God - but right now with all of this - I find myself struggling to be thankful - and feel like a complete a$$ because of it

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Hi Tbrown-

    We want to welcome you to our community! We're glad you've joined us, and hope you find the support you need. The feelings you've described are completely normal. And it is so much to process! You are entitled to feel however you feel, and none of it is wrong. We know the roller coaster of emotions you're on, and hopefully being able to talk about it here will help.

    The Mods

  • Lula73
    Lula73 Member Posts: 1,824
    edited December 2017

    swg- on gofundmes, one of my girlfriends set one up for me because everyone was asking what could they do: send flowers, fruit basket, catered dinner, etc. I was having my surgery out of state at NOLA and everything was moving fast. Flowers are pretty but die, all the fruit would likely not get eaten, etc. so she put the story up-yes we have good insurance but with copays, deductibles, travel, out of work, etc the costs add up. In lieu of flowers, etc please consider donating to the gofundme instead to help with those costs. She set a goal of $5,000 and raised just shy of that amount. All advertised on Facebook. There were people that donated (in my world) a significant amount of money that I never dreamed would donate at all. It’s worth a shot. I’d recommend having a friend/family member with a large Facebook base set it up

    Tbrown-yes what you're feeling is 100% normal. It's not fair and it sucks and you have every right to feel the way you do. The only thing I can tell you on this is It will get better over time. As far as something foreign...did anyone mention natural tissue reconstruction? There are several different types but basically they can take tissue from your tummy or hips/butt and use it to create new breasts. It can even be done at the same time as mastectomy or later if desired. They're warm and soft, look and feel just like the originals and skin still has sensitivity in most areas of the breast. A lot of times if the surgeon you're seeing doesn't perform this type of recon he/she won't ever bring it up, so please don't think they didn't bring it up because they thought you weren't a candidate. Feel free to PM me if you'd like to discuss/ask questions. Here's a link in the meantime so you can see what I'm talking about and what you could expect to look like (*note: the before & after pics on the link include pics of women who had non-skin/nipple sparing mastectomy as well as those who did. if your current surgeon is planning skin/nipple sparing mastectomy for you, you'd match up with the photos of skin/nipple sparing on the site.)

    www.breastcenter.com


  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    SWG, just a quick note to say that the tumor size on mammogram, ultrasound and MRI all differ because of the different technologies, with MRI usually showing a size that is the largest and sometimes wrong. I started with a biopsy saying my primary tumor was .6, then MRI sais it was 1.1, then the final post-surgery path report said .7. So do try to not stress over size. Sounds like you are asking all the right questions, with a good medical team. So best wishes to you. You got this!

    TBrown, while I did not end up with a masectomy I have two friends going through that process now and I feel for you. It is perfectly normal to feel gratitude one day, then anger the next. This is an emotional and physical roller coaster. Sending you good thoughts and prayers and please feel free to keep posting when we can help with information or just reassurance.

  • swg
    swg Member Posts: 461
    edited December 2017

    Thanks everybody, for the messages of support! I am almost 1 week out from my unilateral mastectomy and doing ok!!! Hoping to get my drains out today!!

    And yeah, the final report showed my original tumor as 1.7cm, 2nd tumor was 9mm. Smaller than the MRI but bigger than the biopsy pathology reports..go figure

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