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Anyone here with another primary cancer diagnosis??

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  • 2FUN
    2FUN Member Posts: 789
    edited January 2018
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    good luck maggie! I had 2 wait 8 weeks after my hysterectomy before I had my UMX. I thought it would be only 6 weeks but I needed the extra time. Make sure to pad your schedule/expectations to limit your frustration. I wish I had!haha

  • maggie2
    maggie2 Member Posts: 240
    edited January 2018
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    2FUN, good advice. Thanks.  I just got a call that my BMX tomorrow was moved from 2:30 up to 10 am.  I'm glad, as I'd prefer it in the morning, rather than waiting around the house to go to the hospital. I've been doing pretty well on maintaining focus on the BMX and not thinking about the upcoming kidney surgery, but now I'm worrying about both.  Luckily, my daughter flew in from CA and we've had facials, manis/pedis, and lunch out.  I keep telling myself one surgery at a time.

  • lekker
    lekker Member Posts: 238
    edited January 2018
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    Your nails are done so you are officially ready for surgery! I’m glad your daughter is there with you. All will be well

  • maggie2
    maggie2 Member Posts: 240
    edited January 2018
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    lekker, yes the nails are all important!  Thanks for the vote of confidence.

  • 2FUN
    2FUN Member Posts: 789
    edited January 2018
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    maggie, just take it one surgery. One day at a time

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    The BMX and sentinel node biopsies are over. I was discharged yesterday afternoon. Now it’s the waiting game for the pathology results, 5-7 days. Unfortunately, the PS felt he couldn’t do Direct-to-Implants. So I have tissue expanders, but he didn’t fill them yet. Quite a shocking site, when I was expecting to wake up from surgery with implants

  • lekker
    lekker Member Posts: 238
    edited February 2018
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    Maggie - that stinks. Sorry you were disappointed. I had expanders. The process wasn’t particularly comfortable, but the implant exchange surgery was the easiest one for me by far. Here’s to quick (and good!) path results

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    Hi lekker and 2FUN, I had the post-op with both the BS and PS yesterday.  The BS was very happy with the path report... clean lymph nodes and T1a invasive ductal. She had suspected from the beginning that it wasn't just DCIS.  I'll see the medical oncologist next week to hear what he says and how to coordinate whatever treatments with the kidney surgeon's plans. My PS wants to keep the drains in another week, which is really annoying now that they are pulling so much with any movement. One side was even down to 12 cc so even the nurse thought I'd get them out.  He did do the first expander fill, which was a bit weird watching the process.

  • lekker
    lekker Member Posts: 238
    edited February 2018
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    Sorry to hear about the invasive component. You will feel so much better without the drains - I hope you get them out soon! Please let us know what the MO has to say.

  • ouray17
    ouray17 Member Posts: 39
    edited February 2018
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    Hi, everyone! Just found this thread today & I fit the criteria. I was diagnosed with thyroid cancer in 1984 at 28. Had a thyroidectomy & 9+ nodes removed. The doctors thought they got it all as my scans were clean, but in 1994 had another chain of 13+ nodes removed from the middle of my neck followed by I-131 150 mci. 7 years later with 5 "clean" scans, I had my 3rd surgery at MD Anderson for another 15+ nodes in the center of my neck. My PTC doesn't uptake radioactive iodine but luckily my neck has been stable since 2001. Had a melanoma stage II wide resection in 1992 and took interferon injections for 1.5 years.

    Between 2001 & 2017, all was great. Then, had a mammogram and bingo - BC last spring. BMX, chemo and 8 radiation treatments to go. Have tissue expanders and not excited about another surgery, but plan to take a few months to rest & regroup, then on to reconstruction.

    It's been a journey & I can't help wondering what's in store. Been reading about the genetics & will get the testing done this summer. Hard to believe 3 primary cancers are a fluke. Seems more likely something genetic is causing cancer to grow.

    Side note on thyroid & bc. The media etc. says thyroid is the best to have. After 3 surgeries, I disagreed very much. But after the past 9 months, I have a different perspective. NO cancer is good or "the best", but there is no comparison between the 3 thyroid surgeries & what I've been through the past 9 months with breast cancer. Even having family & friends with bc, I did't realize how disruptive their lives were and what they went through with surgery & chemotherapy & radiation.

    Maggie2, my father-in-law, turned 90 last Saturday. He had a malignant kidney removed in 1990. It was renal cell carcinoma and a fairly large tumor. Luckily, he has had a wonderful life and is still Paw Paw to lots of grands & great-grands!


  • 2FUN
    2FUN Member Posts: 789
    edited February 2018
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    ouray17, it will be interesting to see what your genetic tests say. Mine were all negative, but all of my doctors say it is probably a genetic thing, they just dont have the correct test yet.

  • Lula73
    Lula73 Member Posts: 705
    edited February 2018
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    ouray & 2FUN- I posted awhile ago on this thread. Hodgkin’s lymphoma, melanoma, thyroid and BC. At the BC diagnosis did the genetic testing through Counsyl using the comprehensive & expanded panels. A lot depends on which test panel your dr ordered. They can order just breast, just GYN, pancreatic, etc. The more genes tested in the panel the higher the cost. And many docs only order a minimal panel. It’s worth checking into to make sure the company your dr used evaluated as many genes as possible (with Counsyl, that’s comprehensive + expanded panels.) The company can also detect what they call VUS (Variance of Uncertain Significance) genes. They are genes where a mutation is present but they’re not sure if it’s a significant variation yet. That’s actually where it all starts - they see this variance, don’t know what it means yet, diagnoses start coming in, and they start matching diagnoses up with test results. This means means you can track developments with the VUS genes over time as they may figure out that they are significant. In the end, I had BRIP1 (ovarian cancer risk & slight BC risk), and several VUS genes. Waiting to see what those VUSs amount to.

  • lekker
    lekker Member Posts: 238
    edited February 2018
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    Not all of the genetic testing companies share their data which limits their ability to quantify the risk of a given VUS. The companies treat our genetic information as their intellectual property. There have been movements in the past to “free the data” and pressure companies into sharing, but I haven’t researched it lately. I had my testing done by Myriad (notorious for not sharing in the past but I’m not sure their stance now) and University of Washington (as an academic institution I’d like to think they share but I haven’t confirmed).

    Has anyone researched re-testing if your original tests were done years ago? I need to call my genetic counselor and ask

  • 2FUN
    2FUN Member Posts: 789
    edited February 2018
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    one of my friends works for myriad. I should chat with her about this.

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    Hi All, you had asked for an update once my path report came in. We met with the MO Friday afternoon. He said the Invasive tumor (4.5mm) is triple negative. Ki67 came in at 5; HER is 2 and report says FSH report will come in later. Since the kidney surgery comes next and we have time before chemo could start, he suggested we do the mama print, even though it’s generally used for hormone positive results. Since the initial biopsy showed DCIS ER+/PR+, I didn’t have any idea what to even ask him during the appt.

    Ouray, thanks for the positive story regarding your PawPaw! I meet with the kidney surgeon on Thursday. Both the BS and PS say I’m good to go for whenever he wants to get the surgery scheduled. I’m not sure I’m feeling up to another surgery right away, but I guess we are looking at maybe 3 weeks out. We’ll see

  • lekker
    lekker Member Posts: 238
    edited February 2018
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    Maggie, thanks for the update. Please keep us posted with kidney surgery plans. One step at a time! We are here cheering you on

  • 2FUN
    2FUN Member Posts: 789
    edited February 2018
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    stay strong Maggie, you can do this!

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    Thanks All for the vote of confidence. I mistyped in my previous post.  I meet with the kidney surgeon this week (Thursday).  I'm not actually having the surgery this week.  I don't think I'd be up for another surgery quite this soon.  The FISH results came back and I'm definitely Triple Negative.  

  • jjurkows
    jjurkows Member Posts: 1
    edited February 2018
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    i was diagnosed with stage IIa BC 10 months ago - had DMX - no lymp node involvement. Last week, diagnosed with colon cancer - 30mm malignant polyp in cecum and had a right side colectomy - also no lymph no involvement. Completely different set of doctors. Who do I talk to? What do I need to look for next?


  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    jjurkows, I’m sorry that you have to join this group. I’ve already received so much support here in such a short time. I’m sure someone with much more knowledge will be able to offer advice

  • moderators
    moderators Posts: 8,085
    edited February 2018
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    jjurkows, so truly sorry about this new diagnosis! You may even want to start a new topic that has breast cancer and colon cancer in the topic name. We are sorry to hear that you have to also deal with this! We hope that you can encourage your two treatment teams to collaborate, need be, and get you the best care that you deserve.


    Medicating

    The Mods

  • 2FUN
    2FUN Member Posts: 789
    edited February 2018
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    jjurkows, I would think your MO would know where to direct you.

    If I may ask, how did you know you needed to get checked out for colon issues? I wonder about that myself.

    Sending you hugs! Hopefully someone else has some help for you!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2018
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    Jjurkows, assuming you are in the USA, I recommend that if you are not at a NCCN comprehensive cancer center, that you get yourself to the nearest one. At these places they deal with all kinds of cancer, and the docs can easily communicate with each other to coordinate your care. They may recommend genetic testing, as there are gene mutations that confer a higher risk of more than one kind of cancer. The results might direct your surveillance or help your family members to be proactive

  • lekker
    lekker Member Posts: 238
    edited February 2018
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    Jjurkows - my colon and breast cancers were 12 years apart so different than what you’re going through. Were you assigned a medical oncologist (MO) for the breast cancer?

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018
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    Well, my kidney surgery is scheduled for March 7 in the afternoon.  The kidney surgeon is intending to do it robotically and make it a partial nephrectomy. Let's pray for no surprises.  I meet with the MO on Tuesday to discuss the mammaprint/blueprint results for the TNBC and see what he says is the plan.  Originally, I was to meet with the MO the morning of the surgery, but I said no thanks.  I don't need that stress right before going into the OR!

  • 2FUN
    2FUN Member Posts: 789
    edited February 2018
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    what is tnbc?

  • maggie2
    maggie2 Member Posts: 240
    edited March 2018
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    Oops, I saw TNBC used on another site for "Triple Negative Breast Cancer".  Here, I think everyone abbreviates Triple Negative to just "TN".

  • 2FUN
    2FUN Member Posts: 789
    edited March 2018
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    thanks maggie, I don't know either abbrevistion!

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    How does radiation therapy affect the risk of second cancers?

    Radiation therapy was recognized as a potential cause of cancer many years ago. In fact, much of what we know about the possible health effects of radiation therapy has come from studying survivors of atomic bomb blasts in Japan. We also have learned from workers in certain jobs that included radiation exposure, and patients treated with radiation therapy for cancer and other diseases.

    How does radiation affect the risk of leukemia and myelodysplastic syndrome?

    Most kinds of leukemia, including acute myelogenous leukemia (AML), chronic myelogenous leukemia (CML), and acute lymphoblastic leukemia (ALL) can be caused by past radiation exposure. Myelodysplastic syndrome (MDS), a bone marrow cancer that can turn into acute leukemia, has also been linked to past radiation exposure. The risk of these diseases after radiation treatment depends on a number of factors such as:

    • How much of the bone marrow was exposed to radiation
    • The amount of radiation that reached the bone marrow
    • The radiation dose rate (how much was given in each dose, how long it took to give the dose, and how often it was given)

    The person's age when they were treated with radiation does not seem to be a risk factor. Most often, these cancers develop within several years of radiation treatment, peaking at 5 to 9 years after exposure. Then the number of new cancers slowly declines over the following years.

    How does radiation affect the risk of solid tumors?

    In contrast, other cancers, which are mostly solid tumors, have been shown to take much longer to develop. Most of these cancers are not seen for at least 10 years after radiation therapy, and some are diagnosed even more than 15 years later. The effect of radiation on the risk of developing a solid tumor cancer depends on such factors as:

    • The dose of radiation
    • The area treated
    • The age of the patient when they were treated with radiation

    In general, the risk of developing a solid tumor after radiation treatment goes up as the dose of radiation increases. Some cancers require larger doses of radiation than others, and certain treatment techniques use more radiation.

    The area treated is also important, since these cancers tend to develop in or near the area that was treated with radiation. Certain organs, such as the breast and thyroid, seem to be more likely to develop cancers after radiation than others.

    Age at the time of treatment also affects the risk of solid tumors. For example, the risk of developing breast cancer after radiation is higher in those who were treated when they were young compared with those given radiation as adults. The chance of developing breast cancer after radiation seems to be highest in those exposed as children. Risk decreases as the age at the time of radiation increases, with little or no increase in breast cancer risk among women who had radiation after the age of 40. Age at the time of radiation treatment has a similar effect on the development of other solid tumors, including lung cancer, thyroid cancer, bone sarcoma, and gastrointestinal or stomach cancers.

    Other factors can also affect the risk of radiation-related cancers. Smoking, for example, increases the risk of lung cancer after radiation even more. Early menopause, which can be caused by chemotherapy, can lower the risk of radiation-related breast cancer. For some cancers though, the risk is higher if chemotherapy was given along with radiation.

    Future research will look at how genetics and radiation therapy interact, as well as the link between radiation therapy and other cancer-causing agents.

    image

    The American Cancer Society medical and editorial content team

    Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

  • lekker
    lekker Member Posts: 238
    edited March 2018
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    Maggie - did you have the kidney surgery? If so, any news on pathology