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Bummed out

Isabel

Veteran

I am sorry to dump on you guys, but I am feeling very down. I just got back from an appointment with one of my surgeons and he told me that my last bone scan indicated a little over 21% bone loss in my spine as a result of my anti-cancer meds. I was stunned. So he said that I have to come off the meds immediately, cancel my shots tomorrow and I am having surgery on Tuesday. I will be having a complete hysterectomy in an effort to stop all estrogen production since my cancer is estrogen and progestin positive. The surgery and hysterectomy don't bother me at all, but I am stung by the bone loss. It may not be reversible. I am just having huge regrets that I did not have a double mastectomy and avoid all this. For the young women on the forum, exercise and build as much bone mass as possible.

Anyway, thanks for "listening". That makes me feel a little better already.

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76 replies

Latest reply was from MsMary

annagybe

(website)

Veteran

I am so, so sorry.

Nicole D

Veteran

Oh, Isabel I am so sorry. Don't lose heart: even if your bone mass doesn't increase, low bone mass by itself doesn't cause pain or deformity, it just increases your risk of fracture. And osteoporosis (low bone mass) is treatable with medication, calcium, vitamin D and continuing to maintain your activity level. Tai chi is really good for keeping your balance too (to prevent falls and fractures).
But just gather your strength for your surgery and focus on recovery and getting your rest and good nutrition. Hugs are being sent your way!

Anonymous

That's a lot of news to take in all at once. I'm so sorry, and I'm sending you good thoughts, Isabel!

catgirl

Veteran

Oh, sweetie! I am sorry for this news. I can't imagine how you're feeling, but it doesn't sounds like it's definitively ruinous, and your doctor is looking after you. Big HUGS.

Aida

Veteran

Ohh Isabel, that's awful to hear! I am glad that there is at least partial solutions to prevent further bone loss, but still Big hugs and only the best thoughts coming from me!

(In the meantime I vote go get some bubbles and enjoy thoughts of good times )

Diana

Veteran

((((hugs))))

I'll be thinking good thoughts for you, my friend. You will get through this.

Gaylene

Veteran

That's not the kind of news that you want to hear, but it's good that you have other options for treatment. I also think that you deserve a huge medal (and a big hug!) for talking about this on the forum; your experience is a good reminder for all of us to really consider the risks behind the decisions we sometimes need to make about treatment options.

As Isabel says, gather your strength for the surgery and your recovery. *more hugs*

Classically Casual

Veteran

Is there time for a 2nd opinion? These are such big events to be moving so quickly. I'm a little bit in your shoes, so I'm projecting. Forgive me. Would a mastectomy now be an option instead? All the best to you.

MsMary

Veteran

Oh, Isabel!! Sending big hugs and well-wishes to you!! What a shock this must be! I know you will handle it with your usual grace and aplomb, and we will all be here cheering you on! Sending all my love from California!

Aida

Veteran

(Oh yes! Also, call or PM me whenever )

fern

Veteran

Oh, Isabel, I am so sorry.
I really appreciate your wisdom as well as Nicole's advice above.
Good luck with the next steps.

Raisin

Veteran

Oh gosh, I'm so sorry to hear this. You have every right to be down and vent about it. I hope the surgery goes well and they can help improve the bone density. Big hugs, and best of luck. Take care!

Isabel

Veteran

Thank you so much everyone. I knew that I would feel better hearing from you ! Una - I laughed at the term "not definitely ruinous" ! That just struck my funny bone as a fab attitude to have. You are right, of course, I will adjust. Or at least re-hem my pants for PPL !

Nicole , thank you. That is a good perscpective. I really don't know much about bone loss. But hearing that I lost 1/5 of my spinal bone mass and then "possible fractures" was very upsetting. I have calmed down a bit. I appreciate the info ! In fact, you reminded me that I should start doing some yoga...it will help me relax over the next couple of days.

Aida - LOL, I am heading to the ice cream and yogurt shop tomorrow for bubbles. Great idea.

C Casual, I am sorry that you are going through some things too. Please PM me if you would like. My surgeon is part of a team. My breast surgeon, my GYN surgeon, oncologist, radiologist, endocrinologist and my nurse oncologist all agree that I needed to do this because of the severe loss in a relatively short period of time ( months ). I am ok with that. I still may need the double mastectomy. I am just regretting that if I had done it 2 years ago, when this all started, I might have more "spine" at this point ( yes, that was meant to be a little funny ). Please message me if you feel you need to. Solidarity, not just in clothes ! : )

I guess more than anything, it was the shock. The urgency of it all stunned me. But the truth is that I always knew that this was a possibility, albeit a very small one. The bone loss was just much more than anyone expected. But the good news is that my hips and legs and ribs took a very insignificant hit.

Anonymous

What a shock for you. I hope the surgery goes well, and listen to Nicole D -- she has some good info there.

Take care, thinking of you.

kellygirl

Veteran

Oh, Isabel. Sending you hugs and positive thoughts. It sounds like the Dr.s and Nurses are on top of this and will get you sorted. I wish you all of the best!

Sona

Veteran

Isa- thinking of you a lot. I'm a little confused- it seems that they are doing the hysterectomy because of the estrogen and progesterone positivity but estrogen actually helps prevent bone loss. Are they suggesting you go on a med like fosamax?

Isabel

Veteran

Hi Sona, my meds were stopping estrogen production and blocking estrogen receptors. But one in particular, Lupron, also caused major bone loss. Much more than expected. So in order to take me off the meds and still prevent estrogen production and binding to the cancer estrogen/progestin receptors, I have to have a hysterectomy. They feel that my bone loss will be slower and easier to manage with a hysterectomy than the meds. This will allow me to go on a long-term FDA approved anti-cancer med ( just one ) after surgery...I don't know the name, but it is apparently the standard med for post-menopausal breast cancer patients who are er/pr positive. . The FDA apparently sent out warning letters recently too about long term effects of Lupron and my docs just don't feel comfortable with my situation anymore. If everything goes well, that will manage it for the next 3.5 years. If not, I will have a double mastectomy and take away the possibility of any cancer cells. So the difficult balance is that what I need to protect my bones also causese my type of cancer. Does that make more sense ? ( btw, the reason I was unable to do the standard treatment, Tamoxifen, is because of the severe endometriosis...it complicated everything. )

Mochi

Veteran

Oh, Isabel. It's so unfair that you're being put through the wringer. I want to give you a huge hug. Can I take you out for lunch sometime soon or when it's a good time for you? Feel free to call me anytime.

pil

Veteran

Isabel, I'm sorry you're dealing with this, what a shock for you. Enjoy your bubbles tomorrow. I have no idea what it(they) is(are) - but if a trip to the ice cream shop is involved all the better.

Sveta

(website)

Veteran

Isabel, I am so sorry! It is quite a lot to go through!
I hope you get over this quickly and without any complications.
Sending healthy vibes your way!

Angie

(website)

Fashion Stylist

I'm so sorry, Isabel. (((HUGS))). You are a strong and beautiful women who will overcome this. Your incredible attitude and courage have proved so in the past. We are here to support you all the way.xoxo

bj1111

Veteran

Isabel, you will get through this. It sound like your team is in agreement and is doing the best for you. See you in the other side of surgery day, i'll bet ylf in hospital gowns.

Ingunn

(website)

Veteran

I'm so sorry, Isabel. You will get through this and feel better again. Warm thoughts from Norway! (((hugs)))

Suz

(website)

Veteran

Oh, Isabel - this is such sad news. No wonder you are feeling down!! Big big BIG hugs to you!!

I do not have words of wisdom or counsel, only the deepest sympathy. And I am hopeful that you will in fact be able to reverse some of the bone loss. I believe this is possible, although it can take some time.

Anonymous

I know you don't know me Isabel but I just wanted to send my warmest of good wishes and to say all the best. It sounds like you are being well looked after by the doctors. Hoping for some good resiults.

Deborah

Veteran

Isabel, my thoughts are with you. I can only imagine the shock you must have felt upon receiving this news. Stay strong and know that we will be lifting you up in our thoughts and prayers xxx

Scarlet

Veteran

I am so sorry to hear this, Isabel. Wishing you all the best.

Isabel

Veteran

Phew, I feel so much better this morning. Thank you all so much for your support ! I am so grateful for such a warm and safe place to land. I do have an amazing team both at the oncology center and here. One of the best in the world, I am a very lucky woman.

Diane G, because we don't know each other, it makes it all the more special that you care. Thank you !!!

BJ111, you know, I am going to buy myself a beautiful robe at Nordie's the day of surgery. I don't have to be there until the afternoon which gives me time to swing by Nordie's and get a robe ! Something FAB. Or maybe I will go to Victoria's Secret. LOL.

Suz, thank you so much regarding the bone loss. That really freaked me out. More than the cancer diagnosis 2 years ago .The thought of a spinal fracture really scared me. Nicole made me feel better too about it. But you are absolutely correct. There is hope. I have to be committed to weight bearing exercise regularly and Calcium and my meds.

Mocchi, I would love to do lunch. I will call afterward.

Pil, the bubbles are like tapioca bubbles that Californians put in their drinks. It is awesome. I live on the East Coast and just found an ice cream place that puts them in the ice cream. It is delicious.

You are all so wonderful !

lyn67

Veteran

Hi Isabel, I'm also bummed out, to read this...:-( I hope your oncologists know what they are doing, and it's good to hear that you trust them-that's half the battle. It's a hard time for you now, but hope will get better soon! I smiled to my ears when read about your decision buying a new robe! Now, that's a fab therapy-and a trully stylish woman! Please keep it positive! Hugs!:-)

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