Anyone diagnosed with adrenal gland mets?

duchessoftea
duchessoftea Member Posts: 27
edited September 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hello Everyone,

I was recently diagnosed with adrenal gland mets and have had difficulty finding anyone with this same mets? I know it is rare, but has anyone here had this or know of anyone who has had their BC mets here? I am ER/PR+ HER2-

Thank you:)

Michelle

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited March 2018

    Yup, I had adrenal gland mets.  My first line treatment was Taxotore (Docetaxol), which completely eliminated them.  They haven't been back since (but it has only been about 6 months since I stopped the Taxotere).....so I'm assuming they could rear their ugly head at any time again.

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited March 2018

    Thank you so much, Kkrenz:) I have been been put on Arimedex and my onc is talking about adding Ibrance. So far on Femara the tumor has shrunk some. Had to come off Femara because of joint damage so just starting this other. I'm 44 so I need to be able to walk:)

    Glad your tumor is gone and hope you don't have any others!! Did you have symptoms with the adrenal tumor? It is my only mets and was having severe fatigue....and a horrible skin rash.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited March 2018

    I was dx with adrenal gland mets as well 6/2013   It is no typical but we are out there.!!    er/pr-, her2+  

    First round of treatment was Herceptin/tykerb.  Had immediate response and went 3.5 years NED.  Showed up again in April 2017.  Treatment is now Herceptin ( a Her2+ treatment) and xeloda.   Stable at first scan in August, next scan is in 3 weeks.  Fingers crossed!! 

    When initially dx, I wanted adrenal gland removed, from my perspective -immediate solution.   My onc recommended against it.  He described the adrenal gland as a fishnet that was catching the cancer cells before they got any where else in my body.  I went with his recommendation and so far it seems to have worked,no mets anywhere else!   

    Be well

    Nel

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited March 2018

    Thank you, Nel! I am grateful to connect with you ladies on this crazy journey. I am super glad to hear that your oncologist said the same thing as mine in reguard to not removing the tumor. I also wanted it gone! But we are treating it instead. I am hoping that your upcoming scan is tumor free and you can go back to your NED status!!!!! I am ER+/PR+ her2- so our treatment is different. Please keep us updated with your scan....I will be thinking of you!!!

    Blessings,

    Michelle:)

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  • alwaysbepositive
    alwaysbepositive Member Posts: 39
    edited April 2018

    I haven't been actually dx with them, but my scans show a nodule on mine with metabolic activity of 4.5 SUV. So my onc is watching it to see if it grows. My next PET is in June. I had my last chemo in Dec, now I'm on targeted and endocrine therapies

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited April 2018

    alwaysbepositive,

    Keep us updated on your progress...I am curious how your Arimidex experience is going...I could not take it for terrible side effects. I hope you are able to tolerate it well.

    Blessings:):)

    Michelle

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  • alwaysbepositive
    alwaysbepositive Member Posts: 39
    edited April 2018

    Michelle,

    Will do. So far lately, (not sure if it's from Arimidex or something else, you know how that goes) I have been having stomach pain, intestinal issues, and pain in my bone mets. Hoping it gets better and maybe it's from only being 2 weeks post op from hyst.

    Jenny

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited April 2018

    PET Scan yesterday and that spot on my adrenal is growing (AAAARRRGGGHHH) so changing up treatment routine.   What this adrenal gland spot it telling us is that I have cancer cells floating thru my system and for what ever reason, my adrenal gland catches them before they get anywhere else. So I am currently loving my very protective adrenal gland!!! LOL   Onc tells me not to be worried - lots of treatment options in front of me and this grows very slowly.  So OK I won't worry (at least not much)   

    Yesterday was also the last day I will see my onc of 6 years.  He is moving out of state for family reasons-  I love him but understand   Big bear hug when apt was over    Long sad day at Dana Farber  

    Be well

    Nel

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  • wrenn
    wrenn Member Posts: 2,707
    edited April 2018

    Sorry to hear this Nel and sorry about losing your oncologist. When my doctor moved away to care for ailing daughter I felt bad for her situation but still felt abandoned. :-)

    Can anyone here tell me how your adrenal met was diagnosed? I have a "nodule" on my adrenal gland that is being monitored but am not sure when or how it would be biopsied.

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited April 2018

    So sorry, Nel!!!

    I want to move out of my area but don't want to leave my oncology team, so I know how you feel. Prayers and virtual hugs for you!!! I have not had the adrenal tumor explained like that, so that is really interesting!!

    Michelle

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited April 2018

    Wrenn,

    Mine was found on a PET/CT scan in Jan of this year. It was so dark, they did not even biopsy it, they knew it was bc mets. They did test my for all of the adrenal cancers, though and all were negative. I was put on Femera and it shrunk a tiny bit in about 6 weeks. My oncologist took me off Femera because it was raising my blood pressure and making it where I could not walk:( So I am not on anything right now. Taking a million supplements and hoping for the best. I just got done reading, What your doctor's not telling you about Breast Cancer" by Dr. John Lee and it was really interesting....started taking natural progesterone and hope to feel better soon.

    Michelle

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited April 2018

    Jenny (alwaysbepositive),

    I had those as well. Bone was horrible but my kidneys started bleeding and had to stop taking it. Praying it will work for you and the side effects will get better!

    Hugs,

    Michelle

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited April 2018

    Mine was dx with an adrenal biopsy.  Fine needle aspiration.  Not particularly difficult.  My onc did the biopsy to make sure her2 status and er and pr were the same as initial dx.  This information informs treatment options.  The status of these can change and if you and your onc are not aware - you may not be getting the most appropriate treatment.

    Best,

    Nel

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  • wrenn
    wrenn Member Posts: 2,707
    edited April 2018

    Thanks so much for this information. I wondered if it had to be done surgically. FNA does sound simpler. Thanks again.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited April 2018

    Little stinker on my adrenal is going - so says recent PET Scan. Changing up treatment. Turned down clinical trial - huge commitment of time I am not prepared to make at this time and I have other good options.  My onc of 6 years is leaving Sad, I love him. Transferring to new guy.  They have spoken I will meet new guy on May 14th and begin new treatment    Have to follow up with one of them today to find out what option they are recommending   It is either Herceptin, pertuzamab and tdm1 or Herceptin , pertuzamab and navelbine   Current onc tells me not to worry, little bugger is growing slowly and adrenal gland is doing its job.    Many years ahead of me he says - so that is what I am going with    Let's hope new onc feels the same!

    Hope all are well 

    Nel

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited April 2018

    So sorry, Nel. I hope your new oncologist is wonderfully supportive of all of the decisions you feel like are right for you. My oncology team felt like a FNB was not a good way to go for me. The risks outweighed the benefits. The surgeon and radiologist felt like the PET was conclusive for BC mets and the risk of spread and hurting the kidneys were not worth the risk initially. They wanted to start treating me and see if it responded to treatment. If not, they would biopsy. It did initially to the AI meds but I could not tolerate them so now we are starting IV chemo again on May 10th. Going to do that for 6 months and hopefully with no spread, be in remission, and then have the adrenal removed. So we shall see....I am praying that I don't lose my hair:) I just got it back!!

    Michelle

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited May 2018

    Oncs have put their heads together and are recommending Herceptin, pertuzamab and navelbine combo     I am not happy mostly due to convenience.  I live 2+ hours from Dana Farber and navelbine requires 2 weeks in a row    TDMI Combo is every 3 weeks.  

    Plan for my May 14th appointment is to advocate for one of the following  - 1) can I get the second week of navelbine locally, it is just an injection ( I really do not want to drive 5 hours for a 15 minute injection or 2) let's go with the TDM! combo and  see how that goes.  I will have my research done and bring with me   The new onc better look out, I will be coming armed and ready to speak my mind!

    Duchessoftea - curious why you onc is recommending removing the adrenal.  Mine is pretty clear that it is doing what it should  - stopping cancer cells from  going anywhere else in my body - he advocates strongly for leaving it in

    Best

    Nel 

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited May 2018

    Nel,

    My onc and surgeon explained the tumor as a BC mets that is no different than it going to the liver or anywhere else. They did not understand the rationale of the adrenal tumor doing its job and catching the cells? So I guess different doctors have different opinions....So the plan is to treat with IV chemo for 6 rounds and then remove just like they did the original tumors in lymph and breast as long as there is no spread anywhere else....

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited May 2018

    so weird how they think differently   Good thoughts for both of us to do well, with our gland or withoutHappy

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited May 2018

    Nel,

    I so agree!!

    Have a great day:) I start a 6 month round of Abraxane today....hopefully it will be over after this!!

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  • vania
    vania Member Posts: 1
    edited May 2018

    Dear Friends

    I'm was diagnosed in 2015 with bone and lung mets and since the beginning of 2016 have mets on both adrenal glands. It starts with 3,5 cm but now are 6 cm each!!! The disease on bones and lung are well controlled by fulvestrant and palbociclib but the adrenal mets increased so my oncologist decide to radiate them. I am a little worried about it because I m afraid to loose completely the functionality of the the glands. Do anyone of your oncologist suggest radioterapy? Do your adrenal gland still work or not? How big your mets are? Thank you for answering. I do not know anyone else with adrenal gland metastasis and even my oncologist seems don't have a big experience about it. Best wishes

    PS Sorry for my english!! I'm italian !!

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited May 2018

    Hi Vania,

    My mets were only to the left adrenal per my last scan in January. The tumor was around the 2.5cm mark. At first we tried AI's like Femara and Arimidex but the side effects were so bad. The tumor did shrink some while on those but I have since started Abraxane IV chemo. I have not been scanned since starting so I am not sure where I stand. As far as the function of the glands, I am not sure about that either. We have not talked about it. My oncologist is hopeful that this chemo will wipe it out and then have the adrenal gland removed in 6 months. We have not discussed radiation, probably since I have just started IV chemo treatment. It is really rare and I am my oncologist only patient that he has had that breast cancer has mets to adrenals first without going anywhere else. Even taking it out is rare even for adrenal cancer. So I understand the lack of information.

    Please keep us updated and I will as well with this new treatment!!!

    Blessings to you and your English is wonderful:):)

    Michelle aka Duchess of tea:)

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  • Daniel86
    Daniel86 Member Posts: 271
    edited May 2018

    I did a quick research and this kind of mets seems to be more common in relation to lung cancer. Maybe it could be worth trying to get a consultation with an onc specialized in that kind of cancer. They might be more insightful

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  • Stilts
    Stilts Member Posts: 246
    edited June 2019

    I am newly diagnosed with met to one adrenal gland. Will have biopsy next week and Foundation One testing. Originally I was ER/PR +...when bone mets discovered they were TN...will be interesting to see what happens with this biopsy !!! Anyone out there currently being treated for adrenal gland mets ?

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited June 2019

    I have   had mets to adrenal gland for 6 years, not common, but here we are   They come and go, stay stable and then grow.  I am on my 4th treatment, the first two got me to Ned or kept all stable for a long stretch   The third that included Navelbine, was just toxic for me   In 8 years I have never had a reaction like that to any treatment.  S o now onto the 4th tdm1   Next scan will be in the summer some time  I am her2+ so our treatment routines would be different. Keep us posted

    Nel

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  • Stilts
    Stilts Member Posts: 246
    edited June 2019

    Nel: Thanks for the info. Did your ONC ever suggest radiation or removing the adrenal gland?

    How was the biopsy ?

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited June 2019

    Stilts,

    Biopsy was pretty simple. No to very minimal discomfort following  Biggest issue was having to lay perfectly still on the table during the biopsy.  I have a hard time sitting still lol

    I wanted the adrenal gland removed, my onc was not for it, MBC being systemic and treating it systemically and all that   I was going to get a second opinion, but my first round of treatment got me to Ned for 3.5 years, so I dropped it.  I have a new onc now, who has said she would support, but cancer has also spread to my perionatal (sp) cavity lymph nodes, so even if I had adrenal removed I would have to stay in treatment.  The good news is that I have been MBC for 6 years and this is the first time it has gone past my adrenal gland I certainly wish it hadn't but what ever it is doing is very slow moving  I will take that

    Keep me posted

    Nel

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  • duchessoftea
    duchessoftea Member Posts: 27
    edited June 2019

    Hi Stilts and Nel,

    When I was originally diagnosed with left adrenal mets the surgeon did not want to operate on me because the consensus was more mets would show up and it would be a unnecessary surgery. Well, a year went by and no mets anywhere else and after treatment during that year of hormone therapy and IV chemo ( which did absolutely nothing), I did not have any additional cancer spread. But last December the tumor started growing rapidly and became the size of the my adrenal gland in a matter of weeks and I had to get my adrenal gland removed. I chose not to have a biopsy as all of the doctors and surgeons felt like it couldn't be anything but BC mets. The surgeon felt like it was to high risk to have it biopsied and so I didn't. When they took the tumor out it was confirmed as the same cancer that I had originally. I am getting scanned again in a couple of weeks but I am doing great. Femara worked really well for me and actually did better that abraxane chemotherapy. I am not on any new treatments as they all make me ill and as long as I am doing well with no new mets, I am just going to enjoy life. I am taking one Femara a week. I just cannot take it anymore than that as my joints have just taken a severe toll from it. My cancer was different from you, Nel, as I am ER/PR+ HER2-. So our treatment protocols are not the same. I would look into all options, Stilts. I have felt so great since getting my adrenal gland out....I wish I would have done it sooner....

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  • Stilts
    Stilts Member Posts: 246
    edited June 2019

    Thanks for the info Duchess......waiting to hear back about appt for biopsy . I think ONC is anxious to get biopsy because my original dx in 2011 was strongly ER PR + and bone Mets in 2016 came back TN ! Who knows what’s next

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited June 2019

    duchessoftea,

    Thank you   I am not fond of my now Onc and now that it has spread someplace else I don't think I will get anyone to do surgery tp remove.  Wish I had done sooner

    Nel

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