• How do you deal with the emotional rollercoaster caused by changing treatment plans?

    Asked by Steph921 on Thursday, November 29, 2012

    How do you deal with the emotional rollercoaster caused by changing treatment plans?

    I was diagnosed with breast cancer in July 2012 and was told I would need a bilateral masectomy with chemo before and radiation after. They said I would have to wait for reconstruction for 6 to 12 months. Of course I was devastated! I went through 12 weeks of chemo and responded remarkably well, thankfully. Then I was told I could have reconstruction at the same time as the masectomy! I was thrilled! I thought my life would get back to some semblence of normal. I met with plastic surgeons until I found one I was comfortable with and we dicided on the DIEP flap procedure. We got it all set up for three doctors and an OR for the 8 hour procedure. They yesterday I went to see my general surgeon for my presurgery appointment, to sign papers,etc and he says I can't have the reconstruction and will need radiation after all. I feel like a rug has been pulled out from under me. I was hoping to have this behind me by year-end but now it seems like I have another year of this! How do I deal?

    18 Answers from the Community

    18 answers
    • nancyjac's Avatar
      nancyjac

      I don't know if this will help, but it won't be behind you by year-end regardless. You have the initial surgery done, but there will be weeks of follow visits, drains, etc. As far as dealing with change in general, I think that is mostly a matter of perspective. It is pretty much the norm for things to change whether it is cancer treatment or anything else. Stuff happens that requires us to adapt and change plans every day whether it is our jobs, our family life, our health, and dozens of other variables. If we don't realize that and have backup plans, or are able to adapt to change, everything will always be a constant roller coaster that is created mostly by being too rigid and expecting things to stay the say or as we plan them.

      I was diagnosed just over a year ago. I'm am just now at the point where I don't have some medical appointment or treatment more days than not. But even so I still have regular blood tests, appointments with my oncologist, monthly port flushes, and other medical appointments and treatments for various side effects and other conditions resulting or exacerbated by my cancer. I have accepted that this is now part of my life, my "normal" and because of that it doesn't stress me out any more.

      almost 5 years ago
    • SueRae1's Avatar
      SueRae1

      Changing treatment plans is a bummer, no way around it. I started infusion to treat both my cancers in May, my first scan indicated that my Kidney cancer was still stable (3 years and counting), but the breast cancer lesion grew a bit. We needed to change the cocktail. It was very discouraging. It's ok to fell upset and angry and to express those negative feelings, this helps you let go and move on.

      Remember your medical team is designing the treatment plan they believe will work best for your unique case, I know that this doesn't feel so great right now, but once some time has past, i hope you will feel more positive about this.

      You may want to speak to your oncologist and/or get a 2nd opinion about the radiation. I find that having a second pair of eyes, as it were, look at my case, comforting, even though all 4 times they agreed with my original treatment plan.

      almost 5 years ago
    • lynn1950's Avatar
      lynn1950

      I remember the roller coaster. I had such an optimistic surgeon, that for a while it seemed like all news was bad news. I have learned to live in the present as much as possible. It keeps me more flexible. Yoga, meditation and relaxation techniques have helped me learn how to do this. Not that I don't go to the various horrific scenarios every once in a while, I have a good imagination and I do. It is just that I have also learned how "not to go there" all the time.

      Life has a way of throwing us curve balls - I've just been thrown one (non-cancer related) recently. So living in the moment is a lifelong, healing skill.

      almost 5 years ago
    • Tracy's Avatar
      Tracy

      I have been friends with many people going through treatment (as well as going through it twice myself), cancer is not the same for two people. The Dr's are giving you they're best idea of how things will go (kind of a best informed guess). I tell everyone that this is an alternate reality you have entered with cancer. It can be so hard to lose control over what is happening, its one of those hard lessons that come in this fight. Please stay strong, laugh a lot and take good care of yourself. Tracy

      almost 5 years ago
    • JennyMiller's Avatar
      JennyMiller

      The world of Cancer is filled with the unexpected. I have learned that my life will never return to a normal routine. I take one day at a time -- appreciate it -- and if tomorrow brings a change then I accept it the best I can. I feel that the key is to let go -- turn the control over to your medical team who are trained to know the best treatment for your case. Build your life around these changes instead of letting them devastate you. I wish you the best.

      almost 5 years ago
    • tombo's Avatar
      tombo

      i wish you the best also,,,you will get thru this,,it just may take a little more time than expected,,,since i am a guy,,i have know idea what you are going thru,,well i do know that men can get breast cancer also,,but what i mean to say,,is,,i know how hard cancer is,,radiation amd chemo,,,ohhh thats not fun!!!,,good luck to you,,i think of all you people,,and will pray for you as well,,,sooo now i am going in for my 3 week chemotherapy tune up!!!,,eeeewww gross,,i hate it,,,but,,,,i do want to thank a guy named crash,,who has melped me,,i feel good today,,bye you guys and gals,,,xxxooo mike,,today,,at 11am,,oohhh my dance with the needle

      almost 5 years ago
    • gwendolyn's Avatar
      gwendolyn

      I can certainly appreciate your impatience with wanting to get past as much of the treatments/surgeries as soon as possible. This last minute change in plan must be tremendously upsetting to you. I hate the idea that my appearance is a constantly changing battle as I attempt to conceal the different stages of my reconstruction. I try to remember that my eye is probably the most critical one. Being in cancer treatment can certainly make you feel like your life is out of your control and changes in plan only make it worse, even if you know your doctors are working in your best interests.

      almost 5 years ago
    • SusanK's Avatar
      SusanK

      All I can do is say I'm sorry you are going through this. I, too, felt like I got a slap in the face on the day I was told I would need additional chemo treatments after looking forward to that "end" date for several months. I cried for about two days, feeling very sorry for myself--and my family and friends who were taking me to all these appointments--but then I began to believe that, yes, the additional treatments were for the best possible outcome. My doctors wanted that for me. I had put my trust in them so I had to follow through. It took nearly a year to finish treatments and reconstruction; yesterday was the anniversary of my surgery, the beginning of this battle. My husband and I went out to dinner to celebrate. I look great (except for my wild chemo-curly hair) and I feel strong and healthy. It didn't happen quickly, though...a whole year. Please try to be patient; trust your physicians. Lots of things get detoured--so be angry and sad for a while--but time marches on regardless. You will be whole again.

      almost 5 years ago
    • kenw's Avatar
      kenw

      I was diagnosed with SCC of the base of my tongue on April 2,2012. Our team worked out a chemo/radiation treatment plam and I was to start treatment mid-month. The day before I was supposed to start, my radiologist informed me that I had to have ALL the molars in my lower jaw extracted prior to starting treatment. This was done to preclude any difficulties in healing of the jawbone should I require oral surgery in the years after cancer treatment (these guys are eternal optimists!). And my chemo/radiation treatment would not start until a minimum of ten days after the extractions. I have never been more upset and angry in my life! Here I am dying (I felt) of the most dreaded of diseases, and treatment is put on hold at the last minute. Well, the extractions were done and it was the second only to the internal and external burns to my throat in pain intensity.The emotional setback was almost too much to bear, but we got through it - one day at a time. You will too.

      almost 5 years ago
    • Momx3's Avatar
      Momx3

      I would get a second opinion. I was supposed to have radiation after my surgery and chose diep flap reconstruction because they said I could only have immediate reconstruction if I went that route. Doesn't hurt to get a second opinion on something as important as this. Good luck.

      almost 5 years ago
    • geekling's Avatar
      geekling

      A second opinion would be of definite assistance. A third independent voice couldn't hurt.

      Remember that doctors say they are 'practicing' their field. They don't actually know outcomes any more than anyone else. They go by odds and statistics.

      Once you have all your options laid out before you, take a deep breath. Take another. Doctors tend to lay things out as though the world will end if you don't follow their say so. That is not necessarily true. It is always your body and your choice.

      Should you choose to go ahead and allow this doctor to implement his ideas, prepare yourself for the unknown. Ship captains are unable to predict the size and strength of stormy seas as weather changes. They must heave to or wheel to port as is required, in their judgement, as weather progresses. Cancer and all of life is like that. You must be prepared for change by resetting your balance; re-setting your sea legs, so to speak, as often as is required. This forum, I would suppose, it there so we may assist each other from foundering.

      You deal one day, one moment at a time as you are able. Very good luck to you.

      almost 5 years ago
    • Heather's Avatar
      Heather

      I know how you feel! I was diagnosed in April 2012 and have only completed chemo and a double mast. They couldn't do any work on my while I was doing chemo because my blood count dropped too low. So my next step is radiation but I can't start until I get the port out because my skin is too thin....UGH - so I feel your pain. I deal by talking (complaining - whatever you want to call it!) and by the support of my friends.
      Hang in there!

      almost 5 years ago
    • Schlegel's Avatar
      Schlegel

      It's okay to be afraid. It's okay to be confused -- what are they going to say next? It's okay to be angry. It's okay to be angry at God. As I told a friend recently, you will laugh again. If you can, I recommend a support for cancer patients or a cancer support center.

      almost 5 years ago
    • Schlegel's Avatar
      Schlegel

      I meant to say a support group.

      almost 5 years ago
    • Shoeless' Avatar
      Shoeless

      Nancyjac's answer is excellent. To what she has said, I can only add that you have 2 choices. You can let it defeat you, lay around and feel sorry for yourself, or you can cry for a day or 2, then get mad as hxll and stand up and fight. It sounds like your opening battle was a good one. Don't quit just because you have learned the war is going to last longer than you had thought it would. I don't know anyone who would say their battle against cancer was easy, and I don't know any survivors who gave up and quit.

      almost 5 years ago
    • SoccerLisaMom's Avatar
      SoccerLisaMom

      Steph921,
      I was told I could have reconstruction at the same time as my double mastectomy by my plastic surgeon. When I went to my surgeon that same day she told me that I could only have reconstruction on the one side. Like you I was upset. Had planned having everything done all at once so I would not have to keep being put back under. I like you had chemo first and everything on my ultrasound showed that the cancer was gone. When I had the double mastectomy and they sent my nodes out from both sides, it came back that I still had cancer cells in 4 of the 6 nodes on my left side. My understanding is that it is best to wait until after radiation 6-12 months for reconstruction. One reason is they can treat the area better plus the radiation can change your reconstruction. Your skin may shrink...etc and your reconstructed breast my pull one way or the other and you may not be happy with the outcome. I had the one breast reconstructed and just finished radiation 10/29/12. I just keep telling myself I am on my road to recovery and that the worse is behind me. If waiting is the best thing for my treatment to not have this cancer return then I must wait. I'm here if you ever need to talk or ask questions. You are strong and be proud of yourself for what you have been put through.

      almost 5 years ago
    • SoccerLisaMom's Avatar
      SoccerLisaMom

      Steph921,
      I was told I could have reconstruction at the same time as my double mastectomy by my plastic surgeon. When I went to my surgeon that same day she told me that I could only have reconstruction on the one side. Like you I was upset. Had planned having everything done all at once so I would not have to keep being put back under. I like you had chemo first and everything on my ultrasound showed that the cancer was gone. When I had the double mastectomy and they sent my nodes out from both sides, it came back that I still had cancer cells in 4 of the 6 nodes on my left side. My understanding is that it is best to wait until after radiation 6-12 months for reconstruction. One reason is they can treat the area better plus the radiation can change your reconstruction. Your skin may shrink...etc and your reconstructed breast my pull one way or the other and you may not be happy with the outcome. I had the one breast reconstructed and just finished radiation 10/29/12. I just keep telling myself I am on my road to recovery and that the worse is behind me. If waiting is the best thing for my treatment to not have this cancer return then I must wait. I'm here if you ever need to talk or ask questions. You are strong and be proud of yourself for what you have been put through.

      almost 5 years ago
    • SoccerLisaMom's Avatar
      SoccerLisaMom

      My plastic surgeon said that I could have my double mastectomy with reconstruction all at the same time. Like you I had Chemo first and the ultrasound showed that the cancer was gone. When I went to my surgeon that same day she said that I could only have one reconstructed as she was not recommending the side that had cancer previously be reconstructed at time of surgery. Like you I was upset but had to trust her. When my node biopsy came back I still had cancer cells in 4 of the 6 nodes taken so I had to do radiation also. It is my understanding that it easier to treat the area prior to reconstruction plus if you have reconstruction first the radiation can change the reconstructed breast as the radiation changes your skin and it could pull your breast one way or the other and need to have further surgery to fix that. I just finished radiation October 29th and am waiting now for the six to twelve months to have the other side reconstructed. You are strong and will get through this. If you would like to talk feel free to contact me.

      almost 5 years ago

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