Home Forums General Discussion Just found out I likely have cancer

Viewing 8 posts - 31 through 38 (of 38 total)
  • Author
    Posts
  • #350051
    Healer
    Participant

    You're on!!!!!

    Joy,
    Cheryl

    #350052
    redrock
    Participant

    Hi everyone,

    Well I met with my breast doctor with some mixed news. He says my cancer has not metastasized to the other breast and is positive for estrogen receptor, which means it has a good cure rate. The bad thing is that despite the small size of the tumor, he doesn't think I can have radiation because of my CREST, and that therefore will need a total mastectomy. I'm meeting with two radiation oncologists on Monday to be sure.

    I told him that while I do have CREST antibodies, all I really have is some Raynauds and an echo which shows mild pulmonary hypertension, but he seems to think that once you have any scleroderma, regardless of the mildness of it, you are out of luck with the radiation.

    I also met with my pulmonary hypertension doctor for my 6 minute walk and pulmonary function test and I did GREAT on both. (I credit AP and LDN for doing so well on this). So he is actually thinking the echocardiogram which showed the PH may be overexaggerating my pressures. He also said that with me having a mild case, that this should not preclude radiation. But he is not an expert in this area, I know.

    Has anyone heard of someone who had a mild form of CREST and had radiation without adverse effects? Because I really would like to avoid a mastectomy/reconstruction if possible. Of course I am grateful that the prognosis is good, but I still would like to go the lumpectomy/radiation route if I can. Also because I feel that putting an implant in my body might ramp up my scleroderma so that it is no longer mild.

    #350053
    Maz
    Keymaster

    [user=2547]redrock[/user] wrote:

    Has anyone heard of someone who had a mild form of CREST and had radiation without adverse effects? Because I really would like to avoid a mastectomy/reconstruction if possible. Of course I am grateful that the prognosis is good, but I still would like to go the lumpectomy/radiation route if I can. Also because I feel that putting an implant in my body might ramp up my scleroderma so that it is no longer mild.

    Boy, Redrock, these are some big decisions to be made. I wish I could help in some way, but although I know what I would choose, it isn't necessarily what you would choose, and it's impossible to be in another person's shoes in situations like these.

    With regard to radiation treatment, I can only share that my husband had radiation for parotid gland cancer and he is now suffering the effects from that 12 years down the road. Every year he goes for a full body check to the dermatologist and every year for the past several years they have found cancerous basal cells on his face that need excision, due the derm says, to the radiation. Of course, his face is more sun-exposed than the rest of him, but he is careful to use sunscreen and cover that side of his face when outside mowing or whatever. So, when considering radiation, just be sure to do as much research as you can about possible longterm risks and consider the risks/benefits and what is acceptable to you…that would be my input on that one.

    There is a new type of radiation that is possible today, called IGRT (image guided radiation therapy), which isn't available at all cancer centers. We have one here in Ct, which you can read about at this link:

    http://www.srhs.org/body.cfm?id=636

    This type of radiation targets tumors with a lot more precision than the type of radiation that was done in days gone by, so worth checking into, as it is supposed to spare the surrounding tissue and just hit the targeted tumor.

    My best guess is that silicon implants would be a big no-no for anyone with any type of scleroderma…even saline might carry their own risks for collagen build-up around the scar tissue.

    I guess the positive news is that it is a very treatable type of cancer, which is really heartening to hear, Redrock. Thanks for checking in with us and keeping us up to date…my heart goes out to you and sending lots of healing thoughts your way.

    Peace, Maz

    #350054
    lynnie_sydney
    Participant

    Redrock – in terms of mastectomy/reconstruction. One of my closest friends had a radical mastectomy then a reconstruction about 18 months later. No silicone implants required – they took “bulk” from her tummy. Anyway, she ended up with a great looking pair, so dont be too concerned about all that. There are amazing things that are now possible (and hers was 9 years ago!). Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #350055
    Kim
    Participant

    Oh man, Redrock, if that wasn't a “good news/bad news appt” ! 😯 

    The SD component really does complicate everything because you just don't know how much extra scarring you might have.  So few doctors know anything about SD at all and I question that there are really any “experts” with a disease that can present so differently in everyone.

    Wishing you strength and energy in researching all of this to come up with the best solution for your situation.  “Team Red” is behind you all the way! 😉

    Take care…….kim

    #350056
    redrock
    Participant

    [user=30]lynnie_sydney[/user] wrote:

    Redrock – in terms of mastectomy/reconstruction. One of my closest friends had a radical mastectomy then a reconstruction about 18 months later. No silicone implants required – they took “bulk” from her tummy. Anyway, she ended up with a great looking pair, so dont be too concerned about all that. There are amazing things that are now possible (and hers was 9 years ago!). Lynnie

    I asked about them using my own fat and he said I don't have enough. I said I could gain weight really fast if needed! He said no, that wasn't an option.

    Did your friend have both breasts done? Because one of the concerns I have is that if I do have an implant, my one breast is going to look a lot perkier than the other over time as the other one starts to sag.

    #350057
    MINOCINMAN
    Participant

    [user=2547]redrock[/user] wrote:

    [user=30]lynnie_sydney[/user] wrote:

    Redrock – in terms of mastectomy/reconstruction. One of my closest friends had a radical mastectomy then a reconstruction about 18 months later. No silicone implants required – they took “bulk” from her tummy. Anyway, she ended up with a great looking pair, so dont be too concerned about all that. There are amazing things that are now possible (and hers was 9 years ago!). Lynnie

    I asked about them using my own fat and he said I don't have enough. I said I could gain weight really fast if needed! He said no, that wasn't an option.

    Did your friend have both breasts done? Because one of the concerns I have is that if I do have an implant, my one breast is going to look a lot perkier than the other over time as the other one starts to sag.

    Good luck with your recovery from both SD, Cancer, and your other health concerns. So sorry that you have so much to cope with at one time. 

    #350058
    lynnie_sydney
    Participant

    [user=2547]redrock[/user] wrote:

    Did your friend have both breasts done? Because one of the concerns I have is that if I do have an implant, my one breast is going to look a lot perkier than the other over time as the other one starts to sag.

    Yes she did redrock. And, as I said, no implants. If it were me, I'd be looking for other opinions and a range of options to help me make my decisions. Also, in the interim, post mastectomy, there are some really nice and soft bra inserts to even things up. Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

Viewing 8 posts - 31 through 38 (of 38 total)

The topic ‘ Just found out I likely have cancer’ is closed to new replies.