After first shot of Lupron
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The period ended two days ago. This time, the whole cycle, was more normal. No shock, no panic attack, no trauma. I think I am back to maybe 80% of my old self now. Got my first scans coming up at the end of this week, very anxious. Have scheduled my acupuncturist 2x this week. Once to get me more "calmer", and the other to help promote detox of the contrast.
So far, headache/migraine, are less than last month. Same for hot flashes.
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Brain fog is semi-lifting, but still present.
Had my first scans this week. Mix news, 3d mammogram says I have extreme dense breast tissue but benign. MRI found 2 spots on the left (where my orig breast cancer was) and 1 on the right, categorize it as Bi-rads 3. Waiting on the nurse or doc to give me a call on what is next. Why did they never do an MRI before my surgery so there is a baseline to compare this to? Guess every treatment center does things differently.
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I think I am out of the woods for hot flashes. Dont think I notice any lately. Sleep is better. Weight gain … plateau. I have lost 11 lbs this year. I actually can feel hunger now which is good but still hesitant on eating just anything. Anxiety/panics are still present just less. I notice that as I can see my heart rate not jumping up a lot while I am out and about, unlike before where I can see it go up above 105 in the middle of grocery shopping.
I did get a trigger on blood pressure last week (two days before my acupuncture appointment), not sure if that is due to an acupressure point sticker coming out, the build up of all the anxiety of these scans, and with no NP or doc calling me to explain the results to me. Or it could just be my GERD from eating after a certain time at night that trigger something. But I did calm down in a little over an hour, so no BP pills. There was no strong fight/flight feeling next day, just a mild feel. Not strong enough for me rush to my acupuncturist. I felt way better after the acupuncturist appointment.
So just to sum up my feelings on this painful journey and what I have done and continue to do. Many may feel this is overboard but I dont think so. I feel that I need to know where my health is. I use to be brushing off things to be like oh its just a small pain here, it would go away. Now, I am so sensitive to medicine and any triggers, I have to be more in tune with what is my body doing. And yes, with help of Dr Google, I do find myself going down a rabbit hole. However, without Dr Google, I dont know how to advocate for myself as I dont know what to advocate for. That was how I end up with no MRI prior to surgery (would have demanded one if I had known as I have extreme dense breasts), and the lupron shoot (would have ask why not a monthly shoot instead of a 3 month shoot).
So the rabbit hole that I have been going down have been the following. If the cancer centers could give a preliminary all around post surgery checkup, I think for me, I would feel more calm and able to move forward. I mean if I have the money, I would have done those South Korean Medical tours as that is not only cheaper than all these but also get faster results.
- March = cardiologist to see if anything wrong with my heart or BP and if my heart is ok enough to take on chemo if I so choose. Heart ultrasound says I am good and I was diagnosed with situational hypotension. She was the very first doctor to acknowledge the stress and pressure I have been feeling since the breast cancer diagnosis. Just found out yesterday, she is leaving the practice after 25 years. I really like her and trust her opinion. Heart condition baseline established.
- April = I started acupuncture this month. Found my current acupuncturist after going to 3 different places and sessions with 4 different acupuncturists. I do love my current one as we work together as a team to get me to better mental state.
- April = Saw my eye doctor to review my eyes and about the state of any cataracts as one of the SE of tamoxifen was cataracts. She noted the state and said I have what is associated with age at this point, VERY mild case. Baseline established.
- May = Vascular Surgeon to review my blood vessel on my leg and varicose vein to see if I have any DVT. I dont have DVT but did find out one of the valves are not working super good but told not to worry as I have 7 other valves to pick up the work. I should wear compression tub or socks. Like this doctor, he is very personable. Leg blood vessel baseline established via ultrasounds on vein.
- June = Meet with endocrinologist to discuss my thyroid nodules. She was my orig doc from 10 yrs ago. She did the 3rd fine needle biopsy and results are benign. She is very nice but mentioned I should think about taking these out as base the measurements from the annual ultrasounds, the largest nodule has increase almost 3x size. At the rate its going, it would be problematic when I reach my fifties or sixties. She did say, you have had a tough year, we should monitor and think on surgery in the next few years not now. She is no nonsense but her words echo her understanding what I am going thru. She did offer to prescribe me anti-anxiety pills or depression pills if I want. She gave me names of 2 drugs and have me research them and call the office up if I feel I want to take them. I did not call back for the prescription.
- July = Appointment with a neurosurgeon regarding my 5/29 visit to the ER. He believe I had a migraine with aura that day as the symptoms could be very close to a mini-stroke (transient ischemic attack- TIA). I told him about these tension headaches where he believe some could also have been migraines. But base on our talk and hearing me on my fears and my cancer diagnosis, he ordered a brain MRI to rule out the worst case scenario. Just one appointment, he has shown more compassion, empathy to my mental stress, and had more listening skill then my orig oncologist. I do like him a lot but he is retiring in December of this year. MRI showed no issues other than 2 white spots (was able to negotiate my contrast to 6 ML instead of the recommended dose and doc said it produce good enough image) which he does not feel are necessary worry. The headaches/migraines, he believe its probable that it is related to the lupron as migraines could be related to hormone changes. I do have less since my period has returned. Brain baseline established.
- July = Saw an ENT on the tinnitus on my left ear. He was able to see from the Brain MRI and the CT scan that he did not note any issues that could be causing it. Doc noted it could be stress and lurpon. Did a hearing test and was good, only slightly not great on high pitch tones but overall no issues/concerns. Hearing baseline established.
- July = follow up with my Radiologist, no issues noted. She did see all my appointments thus far as they are all part of the same health network. She did say that you can radiate on the same breast again if needed as I saw others noted here that you can only radiate once. She also believe the papers on the lung cancer risk increase due to breast cancer treatments are base on OLD research as the technology now wont radiate that close to the lung. I do hope she is right but I am to see her for a review in a year.
- August = Breast MRI, couldn't negotiate much on the dosage on contrast, was only able to go from 10 ML to 9.5. It's better than nothing. NP never called me to discuss findings. I had to message on mychart and she responded with another MRI in 6 months. I ask if I should have an ultrasound, she said no need just MRI in 6 months and mammogram in a year. I will be seeing her in November and I do want to go over these in detail on why not much concern and why was no MRI prior to surgery.
- Sept = Meeting with new oncologist this month. Will be sending her a list of topics to discuss, mainly my oncology DX report and pathology report as NO ONE really explain these to me in detail to the point where I get what these reports are saying. That would help me understand what was taken out of me, what are my choices and what steps I need to decide to take.
- Sept = Meeting with Gynecologist as I really have not seen one since my kids were born. I want to discuss my hormone levels, estradiol, progesterone and testosterone. Maybe she can tell me if I have reached peri-menopause and maybe a baseline on my uterus and/or linings. I think those would be helpful if I choose to take tamoxifen.
- Oct = Dermatology to check on any skin issues, an overall skin cancer review.
- Nov = Pulmonary specialist on lung cancer screening. I do believe I have multiple risk factors. I was a smoker for 11 years (smoke free for the last 20 years), I was expose to 2nd hand smoking as a child (both parents smoke like a chimney), I had TB as a kid (this was way back almost 30 yrs ago), and I did have breast cancer treatments. Also want to know what could be causing of me not able to wear some bras now. When I wear them, I feel my lungs are suffocating and had to take them off.
- Dec = have endoscopy and colonoscopy done at same time. The gastroenterologist is nice and understands my reasoning on the endoscopy as the GERD increased since taking the BP meds earlier this year. I hope both have no issues.
This is a LOT of items and yes I could be going overboard. My PCP thinks I too could be overdoing it but she is fine with giving me referrals and let the experts do their thing.
I am seeing a therapist weekly, social worker bi-weekly, acupuncturist weekly, physical therapist weekly (stiffness on left side that was radiated), and nutritionist (trying to gain weight) bi-weekly. I just want an overall check of me being OKAY. I know my current cancer treatment center will NOT give me these comprehensive checks. I dont think any cancer treatment center will give me these on the stage (1A) I was diagnose in. I feel they should so they can help ease the minds of those that questions, was it all caught and am I good now as in all of me.
But I NEED these for my piece of mind and a baseline to compare to in the worst case scenario. Lets hope the next menstruation cycle is coming soon and see how this one goes.
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The 3rd menstruation cycle came and went. This time, it felt more "normal". I was able to take an overnight road trip with the family. Not as perfect as the old days but it's baby steps to getting some normalcy back. The normal today is not the normal of pre-cancer. Just adjusting daily on what is normal to me these days. Everyday is different. Slow adjustments and learning to live in the moment. These are my daily homework.
Was able to see the pulmonary doc at end of Aug as an appointment opened up. It was a great meeting. Another great doctor. She was able to explain some things to me that help me connect the dots. She basically said I dont qualify for the lung cancer screening. Her reasons are the following:
- I did not have TB as a kid. From my ER visit back in Sept 2023, they did a CT Scan and she did not see any scarring on my lungs. My lungs look good then. The TB as a child was base on an anti-body reaction that schools administered then to newly immigrant children. My body showed the reaction as it had that in me, and as part of the protocol then was to give me a 6 month medication to ensure the TB did not active as it could base on my young age then.
- My smoking history and my parents did not qualify me as a risk base on "smoking" history.
- The breast cancer radiation are better nowadays on the lung area, but she also agrees with the papers on that it could increase the risk as noted. She is ordering me another CT Scan in a year to see if radiation had impacted my lungs or not. But we have a baseline from Sept ER visit in 2023 to compare.
She was compassionate and she was able to listen to me and NOT shoot me down on what I have to say. Most doctors have basically punt it to the other or say no it wont matter. She LISTENED and explained things base on her area of expertise and base on her clinical practice.
In 2 weeks, I will see my new oncologist. I wonder if she will listen as well.
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The pulmonary doctor was able to give me a reason on the bra item. She believes that radiation may have hit some skin nerves and those nerves goes to the back. The suffocation feeling is from the nerves being constricted by the bra. She heard my lungs and they were fine. This may heal, may not, may get a tad better, but unknown. She did recommend to see if acupuncture could help. I spoke to my acupuncturist on our last session and she thinks there are some spots that could help. So this is good and bad. The human body have too many unknowns.
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Meet with new MO today. It's like a night and day difference compare to the old one. She heard me and got me. Just felt sooo good to be heard and understood. She explained a LOT of things to me that the old one never bothers to. She did it in a way that is a human to human terms but with her expertise/experience added. I now at least have an understanding on what was in my pathology report.
She gets my mission right now to being me again, mentally. To introduce drugs now its not going to be good for me mentally. So on the right path to assembling a health team.
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So wrapped up on the 4th period last week. Boy, it was heavy. One of those days I felt a little woozy. The hormone roller coaster was also crazy this past month as well. I am still blaming lupron as I think it still in my system. From the OBGYN appointment in Sept, I did a pelvic ultrasound. Found possible 3 or 4 polyp in the uterus and one small fibroid. I met with an OBGYN MD today, and she was the same doctor that delivered my youngest. Such a small world and she still at the practice. Her recommendation was D&C with a hysteroscopy to remove them and then conduct a pathology review. This could be what has been causing my heavy period for years along with low iron/ferritin. Debating on proceeding or not, but doc strongly recommends a biopsy if I want to monitor. Her reasoning was one of these possible polyps is 13 mm and it has an unlikelihood of coming out by itself. If it is not taken out, it will just keep on growing and causing additional symptoms down the road. The lupron may have slow down that growth, so that is only good thing from lupron. I need to think about it more. Also need to check with acupuncturist if there are treatments on heavy periods in the meantime.
Met with the dermatologist yesterday and nothing concerning. Only one area where he believes is an ingrown hair that we monitor to see if it growing or not.
So only item left on my baseline health review is the endoscopy and colonoscopy in December. Wow, time does fly by fast as its just less than 2 months away.
I am continuing to see the acupuncturist weekly for my mental health and back nerve treatments. I am seeing my therapist weekly and social worker on my mental health. They all say I am getting better. I dont feel that I am that much better, but then as they say, I am but just not at the pace I want. To me, the improvement speed is too slow. I need to be "normal" again already, but my mental state has different ideas. Trying to do positive thinking and its hard. I am attempting daily to look at myself in the mirror, and saying it 10x, "I am better day by day, I am healthier day by day." I cant make it thru the 10x without getting teary. If I cant even believe it, how can I work toward it? Need to build up that mental conviction. Too slow…yes I dont have much patience. 😂
I am still waiting on my cardiologist office to schedule in that holter monitor. I also need to think about endocrine therapy, do I go on these treatments or not. Honestly, I am sooo afraid of these drugs. I am still feeling the aftermath of lupron and its been 3 months since it stop doing what it was doing to my body. I recently saw a broadcast on youtube, I dont agree with everything that is being said, but there are some things that you cant ignore. The channel is call "diary of a ceo". It is the most recent video. I am not posting the link here as it could be quite controversial and I leave the choice for those that want to see it to search for it on youtube. The main themes that I agree with are eating good, limited carb (mostly no processed sugar), reduce stress, and exercise.
Hope my next post, I can say lupron has done less crappy things to me than now.
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So wrapping up the 5th period. Well now I know Lupron is good for something, my iron. The months that I did not have a period, my iron levels were actually normal. Which has not happen to me for many years now. This health issue is really on me for not speaking up to my PCPs about it years ago. They only saw the labs with low iron and telling me to take the iron supplement. Well new lab on iron came back as low. So from end of July to now, whatever iron I have had is dwindling. Have to restart the iron supplements and schedule that hysteroscopy and D&C. Hope this will end my low iron issue with no surprises as well.
Lupron, my nemesis, is less "active" this month, good I think. I dont think I am fully out of the woods yet. Weight has plateau. Spoked with a cancer center nutritionist this week. She says whatever diet I am eating is actually what she would recommend other patient to start or do. Same for the exercises. So at least on those paths, I am doing good. Just need those extra calories to add on the lbs.
Yeah, I am not fully out of the woods, but I think I see that light at the end. It's one hell of a 2024.
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