• Can u share? "Wish I had known this before" experience?

    Asked by cranburymom on Thursday, November 17, 2011

    Can u share? "Wish I had known this before" experience?

    I just spoke with Nana, and found out a helpful testing prior to surgery. I wish I ask more question a year ago, when I notice this lump (and my friend did!). If I knew their stories before, I could have made a better decision. By sharing it, I hope to improve our chance of staying sane and healthy!

    4 Answers from the Community

    4 answers
    • CarolLHRN's Avatar

      A vendor I work with had a friend who is going through the exact same treatment I am: Chemo/Radiation, Surgery, Chemo, Surgery. She introduced us and we have become great friends (long distance). He is about 6 weeks behind me in treatment so I share with him any lessons learned. There have been several things that I mentioned that he was struggling with and I had an answer.

      I think it's great to share what I know. Cancer is so complicated with so many moving pieces. Any information we can share with each other makes the journey that much easier.

      almost 5 years ago
    • mariet's Avatar

      I had a month between diagnosis and bilateral mastectomy surgery, and I tried to find answers online, through the breast cancer center at my hospital, and from my doctors. Some of my questions were basic--how much is this going to hurt? How long before I'm back to normal activities? Is there anything special I need to know?
      I was so frustrated because the answers were all in the "the experience is different for every patient", which were non-answers. Gilda's Club was the best resource for me--there were other cancer patients who were in various stages of treatment, and who were willing to share their stories and what they had learned.
      Doctors were the worst--even though I had a good medical team (with the exception of the plastic surgeon)--very little information was every volunteered. As one doctor put it, "I can only answer the questions you ask." How in the world would I know what to ask? I had no experience with breast cancer, and they were the so-called "experts" who had dealt with multiple patients with varied experiences, and any info would have been welcomed.
      For example, I found out that you can develop lymphodema even years post-surgery, which I am now dealing with. No one told me that fibromyalgia patients were likely to develop neuropathic pain near artificial implants.
      And even though I only had oral chemotherapy, many possible side effects were not listed. Since I was pre-menopausal, there were very few medication choices; I took Tamoxifen for 6 weeks and Herceptin for 5 weeks, two years ago, and am still affected by them--for example, both aggravated my fibromyalgia and my pain levels have not decreased since terminating the medications. Between chemo-brain and fibro-fog, I have dealt with personality changes, constant fatigue, and disinterest in former activities--symptoms of depression without the sadness, thankfully, or suicidal ideation; so far I just "don't care". I force myself to be as proactive as possible, with better nutrition, continued research, contact with medical providers, use of resources such as Gilda's Club, and anything else recommended by fellow patients.
      I am not in remission---I have to be 5 years symptom-free. The stage I am in is now called "transition"; it seems to be characterized by feelings of grief, anger, frustration, and often a strong wish that I had not survived--especially that I had not gone through reconstruction. I was given a choice on whether or not to have a lumpectomy or mastectomy, and freely chose the bilateral mastectomy for piece of mind. I don't recall being given a choice regarding reconstruction--if I had known it would take 10 surgeries with still additional surgeries possible, I would have said NO! Right now, I'm asking the surgeons to consider removing the implants--and they are finally listening and considering doing so. i'm not concerned with being flat-chested; I only desire to be pain free.
      Ask questions; search for any resource available; speak with other cancer patients about their experiences and what has or has not worked for them.

      almost 5 years ago
    • cbutinski's Avatar

      wish I had known about the Diep flap I may have had more of a natural look.

      about 4 years ago
    • cllinda's Avatar

      I wish I had heard how wonderful a port was. The only reason I got one is from reading up on the cancer sites. If possible, get a power port. The nurses can use it for chemo, for iv's, for blood draws, and other things. I'm scared of needles, and this is just making things so much easier.

      almost 4 years ago

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