Crikey! Big changes to my treatment, again

awsmGirl
awsmGirl Member Posts: 38
edited July 2016 in Breast Cancer #1

So, last you heard from me was my "BOOM! No more chemo, straight to mastectomy!" post, back on 7/18.

Big changes in the week-10days since then, so another update! ............

i think it's kinda general knowledge by now that chemo has been pretty darn hard on me: sick, back in the hospital repeatedly, serious fatigue, bad guts, etc...  So on Wednesday-7/15, after 2 rounds of chemo, they did another mammogram and ultrasound imaging to gauge its effectiveness.  At that time, i grabbed-hold of an aside by the technician, that while the size of the mass didn't appear changed, there might have been some lessened density.

However, in the days after that imaging session, my Doctors determined that (regardless of whatever i'd chosen to hear), chemo was ineffective.  There was no reduction in the size of the mass, which they would have hoped/expected to see after 2 rounds of chemo.  This is obviously not good.  Apparently, the "flavor" of breast cancer i have -- ER+, estrogen receptor positive -- does not always respond well to chemo. 

So they decided to drop chemo and -- after several bad days of my former surgeon scaring me with "full/radical mastectomy RIGHT NOW!" (this was a focus of my earlier "BOOM" post)  -- instead, under the aegis of my new surgeon and my Onc, i will be undergoing hormone/estrogen suppression therapy, the intent of which is to "starve" the cancer of the estrogen it feeds on.  My new surgeon (who has lost several siblings to BC and is a bit of a crusader, which i like) is very enthusiastic about the prospects.  But she also said that if this doesn't work, that could be bad in terms of what other options are available to treat me.

This treatment is basically just pills, the key medication being Arimidex, and so far no bad side effects.  And already i am feeling better as i recover from the chemo, tho they tell me that can take weeks, even months.  My energy levels are prettymuch bupkiss.  My hair should start growing back sometime soon (just when i've been kinda diggin' it)

I do this treatment for 3months, then another round of follow-up tests and imaging to assess efficacy.  So right before my November birthday and then the holidays, i learn if i'll be ok, or kinda f*kt.

If it's not working (best to look it straight in the face, right?), then it will be a full mastectomy straightaway, followed by radiation.  And figuring out how to ensure as much cancer is out of my hody and/or killt dead, as is medically possible, by whatever treatment is available/effective. 

Guys, i've gotta tell you, i'm scared stupid.  Before, i was just doing Standard Procedure with Positive Expectations, easy to be hopeful.  Now, i've got a Stage 3 Cancer, a big mass, that doesn't respond to the universal treatment.  I've been given a Plan B, and i intend to follow it perfectly, but i've really been shaken by this.  And i don't do well, not being happy, chipper Me.

I'm working on that.

However, if this treatment does work, then things seem much better.  I would be kept on this regimen for a total of 9, maybe as long as 12months, to get the mass to die off and reduce as much as possible.  That would mean a less invasive surgery.  Still radiation after, but less, then 6months after radiation is done, i could have reconstructive surgery. 

This -- despite meaning i will be actively fighting my cancer for up to a year longer, not to mention the costs involved and the very real surgical business and recovery time of reconstruction after all that -- is obviously the outcome i want!!!

But it's a terrible 3months ahead, my calm has really taken a kick to the head, and i WANT to be my positive self, but i'm just super scared. 

Plus, this is weird i know, but since this all came down over the course of the past week or so, i have been struggling with a sort of "fraud" or "imposter" feeling!  I have a big, cancerous mass that is totally, frighteningly real, but now i feel like, if i don't look all "cancer patient"-y -- you know, bald and beat, all pale and pathetic -- is this really real? If i'm not looking and feeling SICK, am i still sick? And the worst one: if i'm not looking and feeling sick, is the treatment really working to make me well?? Rationally, it's ridiculous!  Stupid gremlins, wtF???

I really got shaken up by this change, and my processing is a bit Wonk (lolz, ya think?), and it's left me anxiety-ridden, shy.  I'm working on getting back to ME; it's just taking me a little time to get my sparkle going again. 

On a daily basis, i'm feeling better.  i think i don't look quite so peakèd.  My innards are finally getting back to normal functionality.  I am easily fatigued and sleep a lot, but things are starting to taste OK again!  i'd finally gotten that guy of mine to properly shave my head smooth, so now i guess i'll have to decide to either keep it this way til Sept and cooler days, or just start growing it out again, which will take a while anyway...

So wish me luck with this new course of treatment, mmkayz, please?  i have a lot of hope riding on it.

Comments

  • peony
    peony Member Posts: 306 Member
    #2
    Wow.

    You are really going through it, awsmgrl.  Welcome to the Arimidex club. I hope it does what you need it to do. I think the hardest thing about cancer treatment is being bombarded by situations that overwhelm us. Once you absorb the new scenario, you calm down and just push forward (or try to).   Don't worry about what people think or how they perceive you as a cancer patient.  You're fighting a very personal battle and it's nobody's business.  I used to sit in the chemo waiting room and look around at the other patients (not necessarily there for chemo) and I'd think, "well she doesn't look sick" or "he has all his hair, he must be through with treatment", but we really don't know and it doesn't matter.  We're all on the Cancer Cruise with different destinations.  And I've kept my hair very short. I like it.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    #3
    Crikey! Another treatment suggestion

    awsmGIRL,

    I post on the uterine cancer site.  I was diagnosed with Stage 3b endometrial cancer in Oct 2014.
    Two months later, before treatment, my cancer metastasized to multiple organs (liver, spleen, rectum,
    plus nodules in various places. I now had 34cm of tumors. I was given 4-6 months to live.
    You can read my entire story on the uterine site.

    My insulin growth factor-1  (IGF-1) was very high.  It is one of the key hormones that fuel cancer, including
    endometrial and breast cancer. It has been called a fertilizer for cancer. It has been reported that an
    overexpression of IGF-1 can contribute to resistance to chemotherapy, Tamoxifen, Herceptin and
    radiotherapy for breast cancer patients. I would suggest your doctor test your IGF-1 levels. That could be
    another issue you have.

    I started taking metformin after 2 chemo infusions- the most prescribed drug in the world for diabetes and insulin
    resistance, When I finished my remaining 4 infusions of chemo, I still had 2cm of tumors.  Three months later,
    I was in complete remission. That was August 2015. It was a miracle. Instead of dying, I went into complete
    remission.

    Metformin also decreases circulating estrogen levels.

    Please ask your doctor about getting on metformin. I wouldn't wait.  It has many, many anti-cancer
    properties (I won't go into here)  and is being tested in many trials because of this known fact. I was enrolled in such a
    trial, but got on the real drug and out of the trial.  It saved my life.

    Hope it might help you as well. There are many articles at www.pubmed.gov(website of the National Institutes of Health)
    about metformin and breast cancer. For me, it stopped the food supply (IGF-1).  I think that is how you have to stop
    cancer- figure out what is making it grow and stop the food supply.

    Takingcontrol58

  • Teach76
    Teach76 Member Posts: 354 Member
    edited July 2016 #4
    Many options

    It can be very frustrating to get several DIFFERENT opinions regarding your treatment.  I remember when I was first diagnosed - one surgeon wanted me to try the 3 months of hormones then retest; the other surgeon was ready to go in right away and remove the tumor; the oncologist chose chemo before surgery.  3 completely different courses of action.  I chose the later path and that worked well for me - as you heard many times, each of us is different,

    Glad you are keeping on top of your treatment, and as with all treatment, now the waiting game begins.  Try not to ponder each "what if" and enjoy feeling better for now.  Best wishes!

     

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited July 2016 #5
    chemo before surgery

     One of the "advantages" of having chemo prior to surgery is that the tumor is still present and its response to chemotherapy can actually be seen.  I'm so sorry that your tumor did not respond and that you had such horrible side effects without any benefit.  I guess this is also an "advantage" of seeing what hormone therapy will do to the tumor. Many of us have surgery, then chemo, then radiation,then hormone therapy and have no idea how effective any of it has been until years have passed and we do not have a recurrence (or we do).  I think it is not uncommon for ER+ cancer to be resistent to chemotherapy and why an oncotype test is performed on early stage low grade tumors.

     Having also had uterine cancer, I also hang out on the uterine cancer board and there has been a whole lot of discussion about metformin with some women having amazing results.  A lot of uterine cancers are estrogen related, mine was, as was my breast cancer.  I took Arimidex and Tamoxifen for 5 years for my ER+ breast cancer.   I had surgery only for endometrial cancer as it was confined to the uterine cavity and surgery was the only treatment I needed.   I did not know metformin was used for breast cancer but it sure never hurts to ask your oncologist about it.  Do your homework and go in informed and prepared to ask about it.  There are far too many times when our doctor's hands are tied by insurance companies regarding standard of care treatments vs. treating and looking outside the box.  If that insulin growth factor test is not covered by insurance because it doesn't fall within the "standard of care" protocol, you can still have it if your doctor orders it - but you may have to pay for it out of pocket.  (I really hate insurance companies)  Under any circumstances, it is worth it to have that conversation.  You may hear a valid medical reason why it is NOT something that should be looked into, but you're frightened and you have a right to know all of your options and have all of them explained to you.  Be sure to take someone along to take notes and be that second set of ears.

    There is a lot of good information online.  Google metformin and breast cancer.  Even Komen has some information.

    Best of luck to you,

    Suzanne

  • twnkltoz
    twnkltoz Member Posts: 169 Member
    edited August 2016 #6
    That is a lot to go through!

    That is a lot to go through! I'm sorry you're scared, but sending you lots of hugs and best wishes plan b works fabulously!

  • Teach76
    Teach76 Member Posts: 354 Member
    edited August 2016 #7
    AwsmGirl, any update?

    Thinking of you - it's been a few weeks.  Hope you are moving toward a plan.  Share if you wish, or just know someone is thinking and praying for you today.

    Blessings!

    Kathy

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #8
    We are thinking about you .

    Please check in with us - when time permits.

    Vicki Sam

Discussion Boards