recurrence on scar/chest wall and also other breast

Options
amarantha
amarantha Member Posts: 457
edited July 2018 in Just Diagnosed With a Recurrence or Metastasis

Dear courageous sister sufferers,

Well I did not expect to be back on these boards so soon. Well maybe I did, but was in denial. My previous cancer (which was IBC in the left breast, and responded only minimally to chemo and to radiation, but was treated with surgery in May 2014) then tamoxifen) -- has returned in the form of reddened hot skin, deep down itching, and sharp micro-pains in the scar and the lymph of the skin of my ex-left breast, but also also on my right previously mostly innocent breast. This Monday my gynecologist/surgeon gave me the bad news, but interpreted the biopsies in a hopeful way, pointed out the cancer profile was a less ferocious grade, and more sensitive to estrogen than my original "inflammatory" type breast cancer (90% now, versus 10% before) and sent me to see the oncologist on Tuesday (Yesterday) thinking she would just put me on a regimen of chemo and we'd be done with it. I think she interpreted the symptoms in the right breast as a "new occurence" of a different sort. However yesterday the oncologist pretty much dashed all my hopes that this would somehow be more treatable or was somehow different, and interpreted the "profile" as being exactly the same as the original thing, which she told me, at the onset had presented itself as estrogen positive and a more mild grade, before morphing into something more like triple negative, and grade III. She said now that it has returned, I will be "living with it" for the rest of my life. She therefore did not think chemo was the best option, (since it not been very effective before) and, while putting the ball in my court, strongly encouraged we start with hormone targeting therapy. I was disappointed because I was looking forward to losing all my hair ... (NO that's a joke) but I was disappointed because chemo seems like a magical powerful cure-all, and pretty scary for it not to be a viable option. So I've got this little box of tiny pills - Aromasine staring at me now. Can these itty bitty pills really push back the onslaught of this wicked wicked thing which every day for the last two months coloured more of my chest red, and every day puffs out the little stubby non-breast a little more. Also since I am still not totally menopaused (at 55) I will have an injection in the muscles once every three weeks to basically shut down the ovaries. Lovely. Has anyone seen aromasine actually make the cancer retreat ?

I feel more "normal" about it today, the sun is shining. (To be honest I took half of an Alprazolam last night). Yesterday I felt like it was pretty much the end of the world. Today I have a brain MRI and next week a full body PET scan. Meanwhile the oncologist has pledged to seek further opinions from the cancer team in Bordeaux. (While we are in Poitiers) (France)


PS I updated my profile with a new diagnosis but it is not showing on the bottom of this post. What gives ?

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Dear amarantha, first of all, we wanted to say that we're so sorry you got this unwelcome news. Sending warm thoughts and best wishes for your next tests results.

    To make your new diagnosis appear at the bottom of your posts, you have to make sure it is set as PUBLIC in your Settings. Let us know if you need help with this.

    Best,

    The Mods


    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited December 2016

    I am so sorry you are facing this again. Can you get a second opinion? It is worth traveling for. Hopefully your tumor can be sent out for more advanced testing such as Foundation One or Caris testing. They test for over 700 things and find out which treatments will best work on your particular cancer. Keep us posted

    · Share on FacebookShare on Twitter
  • amarantha
    amarantha Member Posts: 457
    edited December 2016

    Thank you so much for your post, moderators, and thank you KBeee for very important and interesting information. I will indeed be getting a second opinion, but that is the oncologist herself who is going to get it for me, by convening with the staff of the Bordeaux hospital. I had not thought about having a more advanced testing done. I am in France, so I don't know what the quality of the testing done was, in comparison to Foundation One or Caris testing. That certainly gives me some questions to ask. I will have to do some research on this. Thank you very much for this information.

    Today I learned that there is much more to the planned treatment than I had first understood, there is the aromatase inhibitor, (Aromasine ) and the ovary shutting down shots (Decapeptyl), but the big fancy treatment they are proposing is AFINITOR or (Everolimus) which costs (in france more than 4000 euros A MONTH) more than our entire income for a month. Thankfully in France we will never even see a bill ! If we did not live in France I am pretty sure I would be dead by now.

    Today I had a brain scan and they did not find anything bad, however they did find a thing which I do not understand what it is, supposedly benign but I guess it will need to be further investigated. The report in my attempt at translation said "Absence of pejorative elements. Fortuitous discovery of a lesion in the frontal right spongy tissue evoking at first glance a chondrome. To be completed with a tomodensitometric exam (CAT scan ?) to complete the bone study." I'm sure I'll find out more what that means when I have my PET scan. Meanwhile if anyone has a clue ...

    · Share on FacebookShare on Twitter
  • Key2
    Key2 Member Posts: 77
    edited December 2016

    Hi amarantha

    Sorry to hear that you had a reacurrance :-(

    I am also IBC with mets to bones bones diagnosed May 2015 after chemo removal of right breast I had radiation in January 2016 with XELODA at the same time. Was NED however since I get pet scans every 3 months doctor notice a light update of the cancer growing on spine again.

    I went on Afinitor on November 1, 2016 I was so happy and felt really good on Afinitor but developed a cough that came on super fast 2 weeks ago (so beware of little cough dalily it can build up) ..doctor placed me on antibiotic right away and now just finishing steroid to clear up the cough. Hoping to get back in Afinitor this coming Monday!

    We have a tread At Afinitor 2013 you can reach out there if you have any questions.

    I do know most of the others on Afinitor had mouth sores and that is what is most discussed..however I never got mouth sores just the chest infection.


    We are here for you warm hugs!

    Kim

    · Share on FacebookShare on Twitter
  • amarantha
    amarantha Member Posts: 457
    edited December 2016

    Dear Key2, thank you so very much responding here. Wow, so we are Afinitor sisters ! Thanks for the heads up about the thread on Afinitor. I heard about the cough danger, sorry to see that came on so fast. I guess it is a little early to tell, but I would love to hear as soon as you know if you are getting good results in reducing the spine growth on this thing. Warm hugs back !

    · Share on FacebookShare on Twitter
  • Key2
    Key2 Member Posts: 77
    edited December 2016

    amarantha

    I did have great response after being in Afinitor for 6 weeks! My tumor markers which are pretty much on point had been going up from 59 to the high 96 when I went on Afinitor after 6 weeks I had felt so much better and then did new tumor markers and now are 82 within 6 weeks. Then the cough set in :-( my doctor was very pleased. The Afinitor can be a hard drug but in so many ways a positive one in blocking cancer from growing.

    Let keep in touch but please feel free to reach out anytime!


    Kim



    · Share on FacebookShare on Twitter
  • amarantha
    amarantha Member Posts: 457
    edited December 2016

    Hi Kim, am interested in what you wrote about markers. We haven't talked about markers much. I think the markers which have been noted on my cancer made no sense - as they indicated no cancer, where in fact it was raging, I guess sometimes they are just not indicative, although the CA-125 test will be included in the twice monthly blood work accompanying this treatment. Hmmmm.

    · Share on FacebookShare on Twitter
  • I_Spy
    I_Spy Member Posts: 507
    edited July 2018

    Amarantha I know this post is old and you've posted elsewhere since, but I've read a few of those and this one. J'adore votre poésie et votre humour face à des difficultés. "Previously most innocent breast." We have to find the beauty and humor in life, even in tragedy, n'est-ce pas? I am getting ready to go to Urgent Care at a clinic associated with a major cancer center near me, so I can have them look at my MX scar that has been increasingly hot, itchy, and skin is getting rough near it. I went for a walk this morning and I thought of a recent post of yours where you discussed the beautiful things in life you were noticing and being grateful for. I was very grateful for my clean crisp sheets and my cool bedroom and my lovely dog last night, and the ocean breeze cooling the steam of a humid day today. Wish me luck at Urgent Care! I just want to be taken seriously. Here is the link to my current issues in case you'd like to comment: https://community.breastcancer.org/forum/105/topic...


    · Share on FacebookShare on Twitter
  • amarantha
    amarantha Member Posts: 457
    edited July 2018

    Dear Ispy, it is so lovely to be understood and appreciated :-) Merci. Indeed we must find beauty and humour in life and tragedy, in every second of life. Cool crisp sheets, doggies and ocean breezes are high on my list of favorite things as well. I'm so sorry to hear that you are getting symptoms in the scar. .... :-( I pray it is nothing, but how can it be ? it sounds indeed worthy of urgent attention. I'll be on pins and needles with you, waiting for answers. Good luck !

    · Share on FacebookShare on Twitter
  • I_Spy
    I_Spy Member Posts: 507
    edited July 2018

    Merci Amarantha, so sorry I didn't see this response until now. My symptoms seemed to get a bit better but are now getting worse. I will see the doctor on Wednesday for a referral to a new surgeon for hopefully a punch biopsy and scans. I will post on my other thread as there are updates! Until then... doggy and crisp sheets!

    · Share on FacebookShare on Twitter

Categories