Starting Radiation October 2019
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I'm hoping that no news about my chest x-ray is good news. They said that after the doctor reviews, it could get posted on my portal.
petite1: I'm still lobbying for a mammogram before April. They want to wait but I want to do what my second opinion doctor said--do the scan on the anniversary of diagnosis--which was January for me. I hope your mammo, bone scan and, of course, the dreaded colonoscopy go well.
mocame: Any readout on your scan? Did you like the new MO? What's the MO's thoughts on the lumps?
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Kamboka - Any news on your chest x-ray?
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Good morning, ladies. PCP visit went great. I have all the referrals and need to get them scheduled. My TSH was in the normal zone, so I don't need to increase my thyroid medication. He did make me teary eyed. He said, "You are a cancer survivor. You have been given a second chance. Don't waste it."
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Petite1 - You are a Survivor! Look at all you have gone through,physically, mentally, and emotionally! You are strong! I'm glad to hear you got all the referrals you need. Your PCP sounds like a great person.
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petite1: I'm so glad your appointment went well and the labs were normal. Yes, you are a survivor and a strong woman!
mocame: Any news on your tests?
I don't have any news on my CXR. I'm hoping no news is good news. I have to to go the doctor's office next week, so I'll ask for a copy of the report. I keep thinking they will post to the portal but nothing yet.
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I don't have my biopsy until Tuesdays appointment, so it will be awhile until I know.
I hope your test results come soon!
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I just got my CXR report in the portal. It shows a slight enlargement of the heart and a calcified nodule in the right lobe. Since another doctor ordered the CXR, I've sent a copy of the report to my Pulmonolgist. I hope to hear back from him early next week to see if he wants to do a CT scan. The nodule could be from my having pneumonia last year. I hope it's nothing but still no one can tell me why I have shortness of breath and my oxygen level goes down.
mocame: We'll be on standby for your biopsy results next week. Waiting is the hard part.
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Kamboka and mocame, I hope you both get answer quickly. I agree. Waiting is the worst part.
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My pulmonologist said that the CXR was normal. Why do I not always believe doctors any more? I think I want to hear that there are a few abnormalities but there is no problem--not to say that everything is 'normal'. I'll make sure to press for a follow up in six months. They still have not addressed why I have problems with the low oxygen levels.
I just ordered myself online an estrogen and progesterone test. I'll go to the lab sometimes this week. My MO would not order it but I'd like to see what the numbers are. What a shame that we have to do so much research and be our own 'doctors'.
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Kamboka - Can you get a 2nd opinion (or any opinion) as to why your oxygen levels are low? We definitely have to be our own advocate. They are not the ones dealing with these problems, we are, and just because a test comes out "normal", doesn't mean there isn't a problem.
I met with the gyno surgeon yesterday and I really liked him and his Fellow. Apparently he is one of the top surgeons in this region. After talking with them, I decided to get my ovaries out instead of continuing to do 5 years of the Zoladex injections. I felt a lot more confident in him than I did the other surgeon who had never even heard of Zoladex before. This surgeon told me that after the surgery, "We will take care of you from now on" as far as any side effects that I may have afterwards and treating them. I felt really good about everything after that visit. Unfortunately, I have my biopsies today. Ugh! I hate this.
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mocame: When do the results come back from the biopsy? I'm keeping my fingers crossed that everything will be okay. When are you planning to have the surgery? Since I'm menopausal, didn't have to worry about the ovaries. I suppose if it were me, I'd opt for surgery too instead of the drugs with all their side effects.
Did I mention I was in the process of getting qualified for weight loss surgery? I had to have the CXR for surgery clearnace so I'll leave it alone until I get my surgery. I don't want to get disqualified. That's why I wanted the mammo sooner rather than later. I'd hate to get my hopes up for the surgery and then not get to do it if the mammo is not good. If all goes well, the surgery would be in May. I weighed all the advantages and I had five good reasons to do the surgery.
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No, I didn't know. I hope you qualify and I totally understand your wanting the mammo sooner. Keep us informed on how everything is going.
I had the biopsies done yesterday and should get the results in a week but the BS was hoping to get them by the end of the week. She isn't too concerned but apparently I'm a special case so they are more concerned than usual. (11 year rare recurrence) One thing that did concern me during the biopsy is that even though she said my radiated skin looks great, she had a harder time than normal trying to get the small biopsy hole closed due to what she said was tight skin. That is a concern for my future surgery to exchange the ruptured implant out.
I now have my surgery scheduled for 3/17 to get my ovaries out. They said I should be able to go back to work the following Monday or the next day at the latest. My HR dept wants it to be later due to personal experience, but then I would lose paid sick days I need for the implant surgery later in the year. So I need to get that worked out. I'm new to this FMLA process.
Also having an ultrasound done today in preparation for the OOPH. I had a cyst on my ovary years ago and one of my scans showed a cyst so they want to look at it and make sure it is okay. I have so many doctor appointments right now, my head is spinning. Thank goodness, I have an understanding boss...so far anyway.
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mocame, You have a lot going on. I am hoping the biopsy is ok and the OOPH goes well.
Kamboka, I am glad the xray was normal. What are they going to do to find out why your O2 sats are low?
I have to meet with gastroenterologist today. I have labs tomorrow. The mamo has not been scheduled yet. I have called twice and no return calls. I will do a walk in to schedule it after gastro. It is just down the street.
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Petite1 - How did your gastro appt go? Did you also get your mammo scheduled?
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Wow, it seems like all of us are back to doctor appointments again. It was nice for about a month not to have to go to an appointment.
mocame: I completely understand about saving the sick time. I'm lucky that I have lots of annual leave but only a few days of sick leave. I used so much last year. Will the ooph be laparoscopic with you being able to go back to work so quickly? I, too, have noticed that my skin on the radiated side is tighter. One good thing is that it is lifted--looks like I had a breast lift. The other is sagging but not too noticeable. Hopefully, the tissue under the skin won't be too thick/tight to cause problems with your reconstruction. I hope you can get the report back from the biopsies sooner rather than later.
petite1: Is your gastro appointment routine or is there an issue? Is this your first mammo after radiation? I don't think I'll get mine until I see the breast surgeon at the end of March. I have to get an endoscopy for my upcoming surgery. I need to book but I keep forgetting to do it when I get home from work as it's usually after 5pm.
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mocame,
The gastro was just the pre for the colonoscopy. I dread the prep. The mamo is scheduled for next week. Labs again this morning.
Kamboka, It has been 10 years since my last one, so routine. I do have a sensitive GI system, but the gastro thinks it is because of no gallbladder and not sticking to my low fat diet. This is the first mamo since surgery and radiation.
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My oncology PA wrote me back today and said she would request the mammogram to happen on the same day as my breast surgeon visit on 3/31. I told her I would prefer having it earlier. If there is anything negative, we can discuss it at that appointment versus having to schedule another visit. My surgeon is not very personable and she is in and out of the room is like 30 seconds. We'll see if she will get me an earlier date.
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I know what you mean with all the appointments. I am glad only 2 things next week, the mamo and the bone scan. Both are on the same day. The following is only 1, the Derm follow up. Yay.
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Just got my biopsy results...It's not cancer!!! Woohoo! They said it was from inflammation. I wonder if it was from the radiation? I only talked to a nurse and didn't get to talk to the doctor. So relieved!
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mocame:
I'm so happy for you. What good news to start the weekend! It could be from the rads. I have a lot of lumps near the lymph node incision area but I think it's just fat necrosis (I have loads of fat for that). I saw the GYN PA today and she did ask me when I was to get the mammogram so it might have worried her. I haven't heard back yet from my Onco PA. The PA also said I had a large fibroid and has ordered a vaginal ultrasound for next week. Tuesday I also have my Dermatology appointment to look at a few new moles. Always something!petite1: Looks like we'll all be reporting out on doctor visits next week. Hope yours goes well.
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Hello everyone. I sort of fell out of the loop. Fatigue is setting in and I am just making it through the days, counting down the days. I have five more rads tx's left. I still get the “hair standing on end" on my arms during rads. Apparently I'm crazy because the RO said she had only heard that once before.We are chalking it up to static electricity. The itching on my skin is driving me NUTS!!
I hope all of you are making your way through this journey. I so appreciate all of your support and advice.
Great news mocame!!
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mocame, that is wonderful!
TeriJ, Good to hear from you. Did your rad nurse give you some creams and ointments? I used Aquaphor and still use it. It does ruin clothing.
Kamboka, good luck. I had a uterine fibroid, leimyoma, that attached itself to my bladder. It was big. People thought I was pregnant. It led to a TAH.
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TeriJ; Good to hear from you. Sorry you are having fatigue. Only one more week and you can start recovering. Rads for me was so easy compared to what I went through with chemo. Maybe I had problems and didn't even recognize them since it was 100% better than chemo. I agree with petite1 that you need to use the creams or get a prescription cream from the RO. Double and triple up on applying the creams. Not sure if you live where it's cold but that doesn't help your skin either. I had little skin itchiness last year but in the last two months, it's worst. My back is the worst offender and I'm always thinking of creative ways to put cream and oils on my back. (this is when I wish for a significant other to help with stuff like this).
petite1: I have no use for this uterus and ovaries now, so they can take it and throw in a tummy tuck at the same time.
Although, I don't think they will do anything since I don't really have any symptoms. 0 -
TeriJ - When I had itchiness, they told me to put hydrocortisone cream on the area overtop of the lotion. I used it every time I put lotion on. It helped. Hoping your last tx's go quick and a speedy recovery!
Kamboka - I had a vaginal ultrasound in preparation for my surgery. Thankfully, no fibroids but I had a cyst on my ovary that was as big as my ovary! My new gyno surgeon called me at 6:30 PM the night of the ultrasound because he thought that if I read the ultrasound report that I would've been upset and thought there was a problem. He just wanted to call me to reassure me that although it's big, they think it's a simple cyst. He is great!
I hope your ultrasound appt goes well and you can get your mammo soon!Petite1 - I hope you have a great week!
I contacted my new MO by email to ask if I need to do anything more than I already am since osteopenia showed up on my bone density test. She said I should think about getting Prolia injections. Is anyone getting Prolia injections? I just started researching it. My new MO responded to me very quickly. I feel like I have a good medical team right now. They are caring, quick to respond, they listen, and I feel comfortable that they are trying to do the best for me. I hope it stays that way. Other than that, I have an appointment-free week! Yay!
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Good morning. The PCP's office didn't get the insurance authorization into the hospital for the mamo and bone scan, so that will probably have to be rescheduled. My PCP is OK, but some of the office staff, not so much. I have joint pain in my wrist. I wonder if it is from anastrozole.
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mocame: Didn't you just start the AIs? I don't recall if you were on them the first go around. If so, what did your bone scan show prior to starting? My PA insists that because my scan showed strong bones, that it would be years before I could see a problem. She is talking every two years for a bone scan. I really like your medical team and wish I could change mine. The MO that I had a second opinion with seems good but the hospital is further away. Anyways, I have read on some of these threads about people taking the bone building drugs. Not sure which they say is the best. I'm sure you will do the necessary research and let us all know because we'll all probably have to deal with it.
I'm glad I got the vag ultrasound scheduled for Tuesday. The Gyn NP seems slightly concerned with the size of what she felt. At this point with many of us, it's not always a big deal to read the report before we get a call. I'm just happy to get the news one way or the other. I don't like the waiting.
petite1: I had left wrist pain the first month that I started letrozole. It has finally gone away. I started taking turmeric about two weeks ago and either it's really working or my body got used to the AI. My joint stiffness is so much better.
I hope you don't have to wait too long for your mammo and bone scan. Insurance is such a challenge. I got a bill for my Rads and had to pay $4000. The total bill was crazy. I've not received any other bills for chemo so am hoping that they don't wait forever and then surprise me with some gigantic bill.
TeriJ: Hope you are feeling okay this weekend as you start your last week.
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Kamboka - I started the meds almost 3 months ago. My guess is I probably was close to osteopenia without the meds, even though I exercise and eat pretty well. I am petite with small bones. My mom got osteoporosis during chemo and my grandmother had it when she was older. I need to talk to my MO about it more before I would agree to start the Prolia. I'm hearing good things about it, though. There doesn't seem to be much data on getting these shots over a long period of time. I would probably need 10 years, which is how long I am supposed to be on the AIs.
The waiting is the worst part. I hope your ultrasound goes well and they don't find anything concerning. The cost of treatments are so expensive! I have really good insurance through my work but I found out some of what my insurance paid. For my radiation setup appt. alone was almost $5,000. My Zoladex injections are $1,750 every 4 weeks. I would have to get them 13 times a year for at least 5 years...That is over $113,000! Craziness!
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Good morning. The authorization came through. I am heading out to get the mamo and bone scan. After all the surgery, doctor visits, and radiation, my out of pocket and co-pays came to about $3000. Rad was most of it. Surgery was only $160 (my part). FloridaBlue Medicare Advantage.
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petite1: That was quick; I was thinking that you had to wait days or even weeks for the appointments. Hope it all goes well today.
mocame: Did they do the bone scan before your chemo last year? At least my MO team did that and the CT scan prior to treatment. It's always good to have a baseline scan. I was reading a journal article last night that recommends every 1-2 years for the bone scan. My PA is saying they only do every two years. Now, I will have to lobby heavily for an annual at the end of this year since I started AI in November. I don't want to wait for two years when things could get worse.
Yes, genetics does play a role in all of this. The only negative I've heard about one of these drugs (can't remember which one) is that it cause some kind of bone changes in the mouth or around the teeth.
It's crazy how much these drugs cost. Either you go broke trying to live or you die since you can't afford these meds!
I really don't want to do more than five years on the AI especially since the ER+ cancers can come back 12-20 years later. In that 5-10 years of taking AIs, I can have some major health problems, just to have the cancer come back anyways. It's almost like we are 'damned if we do and damned if we do not". Are you going to have the BCI testing done?
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Hello ladies!! My Rao has me using a Jason’s aloe lotion 2-3x/day and wants to me to drink lots of water. Honestly, I was better with applying lotion and doing stretches in the beginning of rads and even a week before. Now, if I smell that lotion it makes me have a negative mind. So I’m doing it twice a day. I didn’t ask, but I’m applying some lidocaine cream on the itchy area when it gets real bad. Four more days. I’ve got this. I can’t really complain. I’m tired in the afternoons but it’s nothing. I nap and then go play tennis.
one of you had a question about bone building medication affecting teeth and jaw bone. I’m a dental hygienist and the main concern with Bisphosphanate drugs and jaw bone or osteoradionecrosis is with the injectables. Be certain you don’t have any periodontal disease or decay that will require tooth extractions. The way bone building drugs work is to block the osteoblasts from breaking down bone. When we have teeth extracted or abscess, the body breaks down bone in order to build it back up. This is where the problem lies. I hope this information helps.
I’ve been wondering when the bills for rads will be coming in. I was dumb and had surgery etc late last year. So I have last year’s out of pocket and now this year’s. I guess when they say “You’ve got cancer” it’s only natural to want to get it out ASAP. I took out the most for my flexible spending this year so I hope I don’t waste it, but I suspect I’ll have plenty of copays, etc in the coming months.
Have a nice Tuesday all of you. I appreciate you all. Ter0
