Surgery, Radiation, and Frustration

Madelyn80
Madelyn80 Member Posts: 6
Up until today everything was 80% fine. I am in remission and I have started plans of eventually paying off our bills. I may need some sort of financial counseling in my future to have a concrete plan of attack but medically all everyone seems to be doing is adding not subtracting.

I started getting a handle on what things would be like for the next few months. I had a plan for my surgery, healing, and being ready to continue my life and put this behind me. Then I find a plastic surgeon I like,today, after having a bad experience with a previous plastic surgeon, and just need to answer if I'll be having radiation. Until now no one has mentioned it, not my oncologist, not my breast surgeon, no one. One would think it won't be happening. Hmmmm..... So I call my oncologist's PA and ask her to let me know the info I need when she has a chance to talk to my medical oncologist.

Then I get the call that they want to do radiation after my lumpectomy and reconstruction. Why, at the door of this huge decision, is this popping up now? Could this have been mentioned earlier so I would have all the facts...apparently not. Just to let it be known, I really don't want radiation. I am so tired of this, this is the final straw for me. I tolerated a year and a half of chemo and just when I felt like I was making progress and getting everything done for my surgery I'm adding another doctor, another appointment, more money, and another procedure to add the long list of things that have to happen to be able to push the play button on my life. I know I am preaching to the Mormon Tabernacle here! I am stuck on pause and just want to smash the remote with a hammer.

It is just too much for me. I don't know if I can refuse but its an agonizing decision. No one is 100% sure they can get it all but I really don't want any radiation. I don't like being treated like I am going to just go along with every decision that is being made regarding my body. I am only one of 4 people who get to make decisions about my own body. Bollocks I say! I just want to have my surgery and go on my merry way. I don't want to have to consult two oncologists, a plastic surgeon, and a breast surgeon to make 1 decision about my life.

I've grown bitter in my old age(31 this past Thursday). Grrrrr.....I know this will pass but it's still annoying!


P.S. I may start writing a book. I don't know if it will ever happen, if it does a working title will be a "A Lump and a Smile: Positive Attitudes in Curing Cancer." I guess I can start on it. If you are interested in reading it please let me know.

Comments

  • Angie2U
    Angie2U Member Posts: 2,991
    Every decision if always up
    Every decision is always up to you. You don't have to do anything you don't want to. You should listen to what your doctors say, educate yourself and do what is right for you.

    I had a lumpectomy and rads and I am glad I did the radiation. It kills any stray cancer cells left behind and that is what I wanted. Rads are very doable. The worst side effect for me was I just got really, really tired.


    I wish you well in your decision.

    Hugs, Angie
  • grams2jc
    grams2jc Member Posts: 756
    You must make your own decision
    I know that when I had to stop rads for a few days due to burning I wondered if it was really worth it to go back. I just knew that if anything ever came back up I wanted to feel like I had done all I could and would have no regrets. But prolonging treatment felt like a punishment and a torture. It took me into another month and I wanted a page on the calendar that was cancer-free. It messed with my feeble sense of control..AND I don't like surprises.
    I don't know your dx but I do know your frustration...I just want normal and I realize normal will never be what it was.

    Make the best decision that you can for yourself and know tht you will have support here no matter what.

    Jennifer
  • mamolady
    mamolady Member Posts: 796 Member
    radiation before reconstruction
    If you decide to have radiation, it would be to your advantage to have the reconstruction after. The rads may change the appearance of the breast.

    All the best,
    Cindy
  • Madelyn80
    Madelyn80 Member Posts: 6
    mamolady said:

    radiation before reconstruction
    If you decide to have radiation, it would be to your advantage to have the reconstruction after. The rads may change the appearance of the breast.

    All the best,
    Cindy

    My Battle with the Beast
    I just lost my long reply that took me 2 hours to type so I will summarize where possible:
    In July 2009 had a lump in my left breast that I thought was just bruised tissue from a 4th party. My mom being a nurse said let it heal. Fast forward to November. I had my yearly visit and the lump was still there. I had an ultrasound, an ultrasound guided biopsy, an MRI, a cancer diagnosis on my husbands birthday, a meeting with my breast surgeon twice, a PET scan which reviled that it had metastasized into my lungs, liver, and spine, an appointment with my oncologist, and a port insertion all within a 4 week period. I started chemo 4 days before christmas. It was the worst Christmas and the worst Christmas "present" I hope to ever have. I don't even remember much about the first 3 months of treatment except that I was depressed a lot, had a new ipod to fill with music for treatments, and I seemed to be the youngest woman and person in the practice. I have a great oncologist, I had a great oncology nurse until she disappeared abruptly in September of 2010. I continue to have a great breast surgeon. I have found out I am allergic to the adhesive on the plastic thing they put over my port site, and the
    radiology department are a bunch of schmucks who don't know how to do their jobs or adhere to deadlines.

    I was on 3 weekly treatments of taxol and avastin for 10 months with zomeda monthly. I gained 50lbs. Every 3 months I had bone scans and CT scans. I had toxicity issues. My mom and husband decided we needed a vacation and to have some time to heal. This is what I had on my 2 weeks of vacation and the rest of the 3 months: I had painful neuropathy in my feet and legs. I had problems with weakness in my thighs, knees, and legs. It was difficulty to walk, climb stairs, get out of chairs, couches, and I am generally clumsy so this was unhelpful. I would fall and had to be physically picked up, no small feat when I was 280, and not being able to keep anything down issues. During that time I had my friendly vomit cup and bags for bathroom vomiting and backup. This was worse than chemo. I lost 30lbs, was on orally dissolving anti-nausea meds, an anti nausea patch, having to go in for IV fluids at least once a week. I was eating ramen, baked potatoes, chicken fingers, fries, and crackers. I was drinking gatorade, flat sodas if I could tolerate them because the carbonation made me feel like my mouth was on fire, and tea.

    In January of 2011 I started Gemzar. I was on it with no side effects I can recall except occasional constipation until mid-June. I had another PET scan and on June 23rd was given the cancer free sash. (I wish I had made one.)Again no mention of radiation by my breast surgeon or my oncologist. I then had an MRI of my breast and determined to be a candidate for a lumpectomy. 1/4 of my breast will be taken away. I was given an appointment at the first plastic surgeons and went in with some information.

    We discussed my history with breast cancer and she bombarded me with info. Her initial and I guess final recommendation was a vertical lift and reduction. A medically sound plan. I wanted to keep my nipple and this let me do it. After all the information and feeling like I had a plan I was told if I had any more questions or concerns to contact them. I thought about it and decided I wanted to keep my boobs a much the same as I could. The gall of me to have questions!! So I sent an e-mail to them about some statistics I wanted to know about their practice and various reconstructive procedures they perform with any problems or issues I may have. The nurse who answered me gave me the internet version of the "teenage money hand" gesture and asked when I would like to set up another appointment. This information is being ransomed. I was angry at being treated like that and my husband was irate.(I have only seen him angry 3 times in the 7 years we have been together)So I had just had my 31st birthday on Thursday so I used some of the money for my second opinion. I called my insurance to ask what doctors on my area were in network and got the name of a few. I researched and found a doctor who practices aesthetic and reconstructive surgery. He is one of the few in my area who does "DIEP" breast reconstruction. He specializes in breast surgery, including augmentations, reductions, and reconstructions. His other areas of expertise include abdominoplasty and liposuction. I felt he was a good choice.

    In the last 24 hours I went to get the second plastic surgeons opinion. I have been told I will be having radiation, referred to a radiological oncologist and they were thinking of doing it after reconstruction. Then it was hinted that my choice may not be the best, that the radiation might change my breast healing, and at this point I want to go into hiding. I'm just wanting to be left alone with my lump, my love, and my life. I am thinking I may just do radiation first and wait what ever the time period is until I can do a combined lumpectomy and reconstruction. I know my breast surgeon wants to do my
    lumpectomy as soon as possible but I have a deadline and with all this bureaucratic crap, added appointments, added financial strain, and doctor's vacations I really don't
    think I'll be meeting it. I wanted to have my surgery in the first week of August so I will be well enough for my friends who are visiting from Florida to be fun by Labor Day. I am just thoroughly fed up with the medical profession at the moment. I am also upset at the amount of debt all my medical bills, utilities, and general life expenses are causing me and all the stress, depression, and lack of my feelings being taken into consideration.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    grams2jc said:

    You must make your own decision
    I know that when I had to stop rads for a few days due to burning I wondered if it was really worth it to go back. I just knew that if anything ever came back up I wanted to feel like I had done all I could and would have no regrets. But prolonging treatment felt like a punishment and a torture. It took me into another month and I wanted a page on the calendar that was cancer-free. It messed with my feeble sense of control..AND I don't like surprises.
    I don't know your dx but I do know your frustration...I just want normal and I realize normal will never be what it was.

    Make the best decision that you can for yourself and know tht you will have support here no matter what.

    Jennifer

    I wanted to do everything
    I wanted to do everything that I could to save and extend my life. So, I did have rads with no regrets.

    If you have rads, we will be here for you. If you don't have rads, we are still here for you.


    Good luck with your decision,

    Jan
  • Rague
    Rague Member Posts: 3,653 Member
    I'm not sure I understand
    I'm not sure I understand what you're saying - you were DX'd 1 1/2 yrs ago but have not had any surgery yet?

    You don't want to do rads - don't - your decision. Personally I did (and will do again IF I have to) everything that is offered to me. IF I didn't and something 'happens' - how could I tell my Hubby (of 35 yrs), Son and G-daughter that I hadn't done everything I could in the battle? because I didn't WANT to do it? Did I want to have lived through what I have in the last 2 yrs since DX with IBC - no because no one ever wants it but YES because I have lived through it - if I hadn't there is no way I'd be here TODAY and I'm riding NED! None of us are the same so we all have to do what we fell is right at the time - so you don't want to then don't.

    What do you mean by "I know I am preaching to the Mormon Tabernacle here."? I can think of several possibilities but none of them make sense to use in a post here.

    REmember "To thine own self be true.".

    Susan
  • jnl
    jnl Member Posts: 3,869 Member
    mamolady said:

    radiation before reconstruction
    If you decide to have radiation, it would be to your advantage to have the reconstruction after. The rads may change the appearance of the breast.

    All the best,
    Cindy

    I just wanted to say that
    I just wanted to say that what Cindy wrote is what little I know about reconstruction and rads. You would want rads first and then reconstruction later.


    Hugs and good luck!


    Leeza
  • Madelyn80
    Madelyn80 Member Posts: 6
    Rague said:

    I'm not sure I understand
    I'm not sure I understand what you're saying - you were DX'd 1 1/2 yrs ago but have not had any surgery yet?

    You don't want to do rads - don't - your decision. Personally I did (and will do again IF I have to) everything that is offered to me. IF I didn't and something 'happens' - how could I tell my Hubby (of 35 yrs), Son and G-daughter that I hadn't done everything I could in the battle? because I didn't WANT to do it? Did I want to have lived through what I have in the last 2 yrs since DX with IBC - no because no one ever wants it but YES because I have lived through it - if I hadn't there is no way I'd be here TODAY and I'm riding NED! None of us are the same so we all have to do what we fell is right at the time - so you don't want to then don't.

    What do you mean by "I know I am preaching to the Mormon Tabernacle here."? I can think of several possibilities but none of them make sense to use in a post here.

    REmember "To thine own self be true.".

    Susan

    Lumpectomy date set.
    I was just thinking of the Tabernacle choir as a large sounding board of advice to which we are all a part. I know singing for me has been a large part of my healing process. I'm sure others sing too so I guess I just got stuck in a singing frame of mind.


    Other than a needle biopsy and a port being put in no other surgery. I am scheduled for my lumpectomy on Aug 8. I am not happy with the way things are shaping up for recovery, possible radiation, and reconstruction.

    I know medically this is what needs to happen but I am just hoping for clear clean margins and no radiation. I want reconstruction as soon as humanly possible. I know my breast surgeon doesn't seem to care about when I get the reconstruction, all she has her heart set on is lump removal. I on the other hand just see the removal as a huge and horrible deformity and want to correct it as soon as I am able. I am only 31 so my breasts to me are more important to me right now as a woman. Some day, if I am able to be a biological mother or even an adoptive mother they will still be important to me. They are very much linked to my life, personality, friends, and intimacy with my husband. I was diagnosed 2 years after I got married. I think if I were older, had kids or grand kids of my own already, and had been married for longer I may feel differently and may not even care about reconstruction.

    I have a whirlwind of stuff to do before that date. I need a physical firstly. And to make sure some of my other testing data I have already had gets faxed to my breast surgeons office.

    I am curious if anyone has made or bought clothes for after care and can send me in the right direction? Also I am having a fundraiser thrown for me with an online auction of goods and services. I don't want to toot my own horn so I will keep the details of it to myself unless someone is specifically interested in the site or Facebook group.
  • BMS
    BMS Member Posts: 127
    Madelyn80 said:

    Lumpectomy date set.
    I was just thinking of the Tabernacle choir as a large sounding board of advice to which we are all a part. I know singing for me has been a large part of my healing process. I'm sure others sing too so I guess I just got stuck in a singing frame of mind.


    Other than a needle biopsy and a port being put in no other surgery. I am scheduled for my lumpectomy on Aug 8. I am not happy with the way things are shaping up for recovery, possible radiation, and reconstruction.

    I know medically this is what needs to happen but I am just hoping for clear clean margins and no radiation. I want reconstruction as soon as humanly possible. I know my breast surgeon doesn't seem to care about when I get the reconstruction, all she has her heart set on is lump removal. I on the other hand just see the removal as a huge and horrible deformity and want to correct it as soon as I am able. I am only 31 so my breasts to me are more important to me right now as a woman. Some day, if I am able to be a biological mother or even an adoptive mother they will still be important to me. They are very much linked to my life, personality, friends, and intimacy with my husband. I was diagnosed 2 years after I got married. I think if I were older, had kids or grand kids of my own already, and had been married for longer I may feel differently and may not even care about reconstruction.

    I have a whirlwind of stuff to do before that date. I need a physical firstly. And to make sure some of my other testing data I have already had gets faxed to my breast surgeons office.

    I am curious if anyone has made or bought clothes for after care and can send me in the right direction? Also I am having a fundraiser thrown for me with an online auction of goods and services. I don't want to toot my own horn so I will keep the details of it to myself unless someone is specifically interested in the site or Facebook group.

    Margins and radiation
    I had my port put in last September and at the same time had the sentinal node removed. I had chemo and then my lumpectomy in January, which also included the removal of 11 more nodes. The margins were clean and the 11 nodes were also clean. Then I had 33 rad treatments.

    Having clean margins does not pre-empt you from having radiation, but as others before me have said, to each his own decision. My decision was based on my 16 year marriage and my 12 year old son. Did I want to do whatever I had to to be here with them? you bet. Was it hell to go through for the last year? You bet. Would I do it all again if I had to? Without a doubt.

    Good luck with your decisions and lumpectomy. We are here for you and will listen. The decisions are yours to make. BTW, rads were the easiest part of this entire ordeal.

    Bonnie
  • skipper54
    skipper54 Member Posts: 936 Member
    BMS said:

    Margins and radiation
    I had my port put in last September and at the same time had the sentinal node removed. I had chemo and then my lumpectomy in January, which also included the removal of 11 more nodes. The margins were clean and the 11 nodes were also clean. Then I had 33 rad treatments.

    Having clean margins does not pre-empt you from having radiation, but as others before me have said, to each his own decision. My decision was based on my 16 year marriage and my 12 year old son. Did I want to do whatever I had to to be here with them? you bet. Was it hell to go through for the last year? You bet. Would I do it all again if I had to? Without a doubt.

    Good luck with your decisions and lumpectomy. We are here for you and will listen. The decisions are yours to make. BTW, rads were the easiest part of this entire ordeal.

    Bonnie

    Your decision
    I went with the rads because I wanted the best odds I could get, even though my PET scan was clear. I want to stick around for a while. My PS wouldn't consider reconstruction until after rads. I saw him last when I still had 10 days to go (back in March) and he scheduled a visit for the end of August. He'll look at skin integrity at that point and decide what to do. I've heard of women having problems with reconstructed breasts if that is done before rads. Everything is your decision but do some more asking.
  • MAJW
    MAJW Member Posts: 2,510 Member
    skipper54 said:

    Your decision
    I went with the rads because I wanted the best odds I could get, even though my PET scan was clear. I want to stick around for a while. My PS wouldn't consider reconstruction until after rads. I saw him last when I still had 10 days to go (back in March) and he scheduled a visit for the end of August. He'll look at skin integrity at that point and decide what to do. I've heard of women having problems with reconstructed breasts if that is done before rads. Everything is your decision but do some more asking.

    Question....
    What is your diagnosis, type of breast cancer? After all your chemo how large is the remaining tumor? You may be surprised that after your lumpectomy, your breast isn't as "deformed" as you think it will be...As far as radiation, up to you...but considering what you've stated about the metastasis, and your young age, I , personally would do the rads....taking anything and everything they have to throw at this...so there is no regrets down the road..

    Wishing you well in making your decision....
  • debi.18
    debi.18 Member Posts: 850 Member
    MAJW said:

    Question....
    What is your diagnosis, type of breast cancer? After all your chemo how large is the remaining tumor? You may be surprised that after your lumpectomy, your breast isn't as "deformed" as you think it will be...As far as radiation, up to you...but considering what you've stated about the metastasis, and your young age, I , personally would do the rads....taking anything and everything they have to throw at this...so there is no regrets down the road..

    Wishing you well in making your decision....

    It's your decision
    Just my opinion, but I would opt for the rads. I had a lumpectomy, port put in and 2 nodes removed. The 2 nodes each had only a tiny bit of cancer. I had the choice to have additional surgery to remove more nodes or just to leave them alone and let chemo and rads do their job. I opted for surgery - had 13 more removed last Friday. Figured I'd rather be safe than sorry. The additional nodes were negative, but I didn't want to take the chance - wanted to fight it with everything possible.

    Wishing you the best with your decision.

    Hugs and Prayers,

    Debi

    By the way, I also was scared about being "deformed" after my lumpectomy, but have to say I am very pleased with the results - it's barely noticeable.
  • Alexis F
    Alexis F Member Posts: 3,598
    mamolady said:

    radiation before reconstruction
    If you decide to have radiation, it would be to your advantage to have the reconstruction after. The rads may change the appearance of the breast.

    All the best,
    Cindy

    You could start rads and
    You could start rads and then if you want to, you can always stop. Or, you could just not do them at all. Your choice, your decision, your treatment.


    I do wish you good luck and will be thinking of you.


    Lex
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    skipper54 said:

    Your decision
    I went with the rads because I wanted the best odds I could get, even though my PET scan was clear. I want to stick around for a while. My PS wouldn't consider reconstruction until after rads. I saw him last when I still had 10 days to go (back in March) and he scheduled a visit for the end of August. He'll look at skin integrity at that point and decide what to do. I've heard of women having problems with reconstructed breasts if that is done before rads. Everything is your decision but do some more asking.

    I really never thought twice
    I really never thought twice about having rads, as, I knew that I wanted all of those pesky cancer cells burnt, killed, gone forever. You must weigh your options and make an informative choice based on what your gut says.

    ♥ Kristin ♥