Spring 2018 Starting Hormone Blockers

Veeder14

That's good to hear I hope they're right also. By the way, does anyone still have breast inflammation from the radiation? I notice that I'm still about the same size as when I finished. I was hoping the swelling and inflammation would go down so my shirts would fit better. Just wondering.

kaywrite

Veeder, flowergal, Beaverntx - thank you xox.

Veeder, I may have some inflammation/seroma issues I'll be asking about tomorrow. My left breast (DCIS) was always a bit bigger than my right. After the stereotactic biopsy I had a huge hematoma that stayed until my first lumpectomy, when the surgeon took it out. It made my left breast seem larger than ever (in my case, full C, rather than . Swelling continued after the two lumpectomies, with seromas. Radiation inflamed, but there was a small window when the left breast finally seemed to settle into being a bit smaller than the right - which seemed reasonable to me. Now it's about the same as it was pre-DCIS. <smh> I don't know whether to be concerned or congratulate the surgeon for "moving things around," as he called it. So, I'll ask.

Beaverntx, ugh, these people and their bizarre appointment schedules. I was lucky to get three appointments aligned for tomorrow, which means I'll be at Winship all day, but get it all over. Thank you for the encouraging words. I just want this in the rear view mirror, like all of us. Having breast cancer is stressful enough, but dealing with clinic administration for appointments and billing is like dealing with the Three Stooges. I took copious notes during the busy time of treatment (I felt I had to, so many working parts), and the incompetence was astounding. I showed the hospital social worker my pages-long notes of run-around phone calls, fake appointments, how many times I had corrected my phone numbers (and they still aren't right) so they could contact me properly, etc. She was so horrified she turned it in to an advocacy officer employed by Emory. I'll have a word with her again tomorrow. I think it's reprehensible to cause cancer patients so much stress due to incompetence. Contrary to the service they should be providing.

flowergal, thank you for the there, there. . I'll have one for you in August if you need it.

flowergal

Hi Veeder,

I also had swelling that did not improve after rads and breast has been warm to touch the enire time and i asked the MO's NP when I saw her to F/U on anastrazole and she looked at it, immediately dx breast lymphedema and sent me for PT with a lymphedema specialist. Since my arm was not swollen, and I was told I only had 5% chance of getting it, ( which was NOT accurate since rads to the axillary nodes increase the risk by about 20% FROM WHAT i HAVE READ) I didn't think about this as a cause. My swelling is at least 50% less and I do manual lymph stimulation exercise, wear a compression bra 24/7 and a swell spot. I am also getting PT for my torn rotator cuff which complements the decompression therapy. So, you may want to ask about this and I hope you don't have it, but if you do, catch it early like I did.

Veeder14

Thanks flowergal for the information. Sorry to hear you have lymphadema but it's good you went for therapy and it's getting better. I will ask the MO at my first follow up in a few weeks. My lymph nodes weren't radiated and my skin isn't warm but who knows, I'll find out. My arm is also ok not swollen. I hope the shoulder fractures aren't causing inflammation but there is some bruising that has leaked through the tissues down to my breast. What is a swell spot?

JosieO

Veeder14,

Thinking of you and hoping you can get more comfortable and that the stress of this first mammogram will ease. You’ve been through a lot-adding to the virtual prayers and hug sent your way

Veeder14

Thank you JosieO for your comments and concern.

kaywrite

In between imaging and MO appointments, but: images are clear! Yeah!!!!!!!!

star2017

Wonderful, kaywrite!!!!

Beaverntx

just what we wanted to hear, Kaywrite!! Good news.

flowergal

Kaywrite- hip hip hoorah!

Veeder - a swell spot is a soft padded insert filled with beads that massage and break up fibrotic tissue so lymph can drain better.If you google it, you can see pictures of them .I have a lateral breast spot that goes inside the bra next to my skin. This has all been a huge pain in the neck and since heat makes it worse, I am limiting my outdoor work since it is SO hot here ( as is most of the country) The weeds are wining the war in the garden, but oh well, it's not the end of the world!! Just whining a bit- ignore me!

Have a good restful weekend every one!

Veeder14

Congratulations kaywrite, good news!!

kaywrite

Thank you everyone! Happy dance indeed. I didn't realize how anxious I was until the report. Then I saw the MO, who is taking me off anastrozole and therapy-free for a month - then on to tamoxifen. Reason: lady bits (labia to be blunt) are so dry they are chafing at the least touch - ie clothing. Particularly one side. Downside of aging (and estrogen starvation). Wants to see if a month off improves, and then if tamoxifen is friendlier. She says due to my age, diagnosis, etc., there are no risk in doing so, and if we can make things down there better, well, that would be nice. On the boob side, I have no seromas and the scarring is normal.

Pending anything else, I am free until January.

Veeder14

flowergal,

Thanks for the information. I'm going to ask for a new referral to the Lymph specialist so they can determine weather I have breast lymphadema or not. It just seems the breast size from inflammation should be shrinking down. It's unchanged since the accident which is good because I was hardly taking it easy on my arm by breaking my shoulder, and was afraid my arm would swell up but it didn't. I hope your lymphadema goes away soon.

windingshores

Veeder I have been on Femara for 4 years and had severe osteoporosis before starting. No new fractures though bone density after two years was down 5%.  I am unable to take osteoporosis meds of any kind. Tamoxifen's risk of blood clots scares my docs due to afib.

Veeder14

Hi windingshores,

I have severe osteoporosis plus these fractures. Glad you don't have any new fractures. How come you can't take the osteoporosis meds? I took some of them but they made me feel sick all the time, really reluctant to start on them again. Plus the issue of dentists not wanting to treat patients on those meds. I'll talk all this over with my MO next week at my app't. Thanks for bringing up these issues.

flowergal

Hi Veeder,

Just wondering how you are doing. Are the FX healing?

Hope everyone is doing OK.

Veeder14

Hi flowergal,

Thanks for asking! Saw the orthopedic surgeon yesterday, took xrays and the fractures are beginning to heal. The right shoulder is worse. As long as these continue to heal I won't need surgery. The gap between the fractures are pretty large though and I have osteoporosis so I'm a little worried. I do feel a little bit better and can move around better without as much pain. Return for more xrays in 7 weeks.

Saw the MO yesterday who said we could put off my August mammogram to Sept. Hopefully, I would be able to do it then without causing damage to the healing shoulders. Discussed Tamoxifen concerns, upset stomach, bladder urgency (no infection though), and scalp itching. Does anyone else have these issues? The MO wasn't too thorough at checking my prescriptions at my first app't in May as I've been using Estrace cream. I told her about it yesterday and she said as long as I just use a little bit to control vaginal itching and burning it's ok but no doctor would have prescribed it post cancer. I used it very sparingly before getting breast cancer anyways.

How's everyone else doing?

flowergal

Hi Veeder,

Glad you are getting better. Re you on any osteoporosis meds?

I am doing OK No side effects on anastrazole so far. My PCP said to wait a year to recheck bone density as it waqs stable last time. He did defer to the MO if he wants one done when I F/U in Dec. I am still getting lymphedema treatment and it is slowly improving. I am starting to accept that this is a lifelong problem and doing all I can to improve.

Hope everyone is doing OK this summer.

JosieO

Hi Veeder,

So glad flowergal asked about you and you put out a response. I was worried about you, but didn’t want to add to your stress by creating a post. But thanks for doing it, flowergal (!!!)

Sounds like a fair trade off- longer healing time but no surgery. I think if you get a good physical therapy program you will heal well and send good endorphins throughout your body. Won’t hurt your cancer recovery, either.

You have demonstrated grace and courage through all of it, Veeder. I am proud to know you.

Best wishes for good healing

JosieO

flowergal,

Read good things in your update-happy for you.

Sending healing thoughts your way

Veeder14

Thanks Josie O for your comments. I'm looking forward to PT which usually helps me a lot. flowergal, I'm not taking any osteo meds but have in the past. I just couldn't continue after I had a major dental emergency and no dentists would extract my tooth. I may reconsider if there's any new meds available.

flowergal

Glad to hear from you both. I guess this thread is winding down but i do hope to stay in touch with you. I feel a strong connection even though we will never meet.

Have a good rest of the week.

Veeder14

Yes, let's keep in touch. Looks like I have a follow up app't with the RO in 6 months.

JosieO

agreed, let’s stay in touch and continue to encourage and support each other. I feel close to the two of you as well.

Have a good rest of summer

flowergal

Hi Everyone -Not sure if anyof you still follow, but hope all are doing OK. Veeder, hope you are still on the mend!

I had my 6 mo. F/U mammo. & ultrasound today and my fortune cookie was right ." You will soon receive pleasant news" I showed that to my surgeon who cracked up. I did have a little scare in that I found a lump on my rt breast early in the month and wasn;t sure if it was just lumpy normal tissue, so I mentioned it, they checked it, did mammo and ultra. and decided it is just a fatty tumor. ! So I am very happy today .

Beaverntx

Congrats, flowergal. So good to get the reassurance of pleasant mammogram news. That was my experience, too. Hope everyone else in our group shares that also!

star2017

flower gal, that’s wonderful news

Veeder14

flowergal,

Good to hear your mammo and US were clear! What a nice relief. My shoulders are feeling a little better and I'm working with my regular PT. However, she doesn't think I should have a mammogram yet because it might disturb the healing especially the side ways picture because you have to lift up your shoulder. So, I'm a little worried not being able to get this checked out. Have an order for breast MRI for November and by then I should be able to do that or maybe both.

JosieO

YAY, flowergall !!!

SO very happy for you, and glad to share in the enjoyment of your update !

Onward and upward...enjoy the rest of summer. You deserve it

JosieO

Hi Veeder,

Good to hear from you and to know that your shoulder recovery continues.

I would just say to focus on your healing and have confidence that the doctors and procedures have done their job, and that when you are better able to tolerate it, you’ll have that good “fortune cookie” news to share here with us. And I will be one of the many letting out a BIG scream of happiness for you.

My own mammogram is not until early December. At times I get a flicker of fear, but I then think back to my mammogram of one year ago, when in total ignorance I learned of my cancer. But I had such an outstanding set of doctors, and carefully planned and executed surgery and treatments, so then I remind myself to focus on the good things and TRUST.

Prayers will continue to go up for all of us as we await that “first” post-cancer mammogram. Strength and courage to all.

Keep each other posted..