Just diagnosed, several side issues and side conditions
Hello, (Sorry this is long)
Just diagnosed (3/29/2021) with 3 lesions:
1) Left breast DCIS: 4.9 cm, E+, Her2-
2) Right breast ILC E+, P+ Her2-
3) Right breast DCIS E+ Her2-
Recommended bilateral mastectomy, not sure if I'll need chemo, may or may not need radiation (being told not definite but one lesion is 4.9 cm and one of three "OR" criteria is lesion 5.0 cm or larger) so I'm telling myself yes as it'll be easier to hear "No" when expecting "yes" than other way around, definitely Aromatase Inhibitor or Tamoxifen
Not sure about reconstruction, definitely own tissue if so (see "Side conditions" below for some factors here)
So far I've had:
1) Multidisciplinary Team Meeting (Breast Surgeon, Medical Oncologist, Radiation Oncologist)
2) Planning/strategy meeting with Primary Care Physician (had been scheduled as a "physical" before diagnosis came through. Glad I had the appointment booked when it did.)ct
3) Bone Scan (essentially clear; the one area that didn't look quite right checked out on further plain x-rays/CT)
4) CT (lower chest/abdomen/pelvis) actually done in process of diagnosing kidney stone, but useful for looking at spot in 3) above and checking out rest of area regarding breast cancer issues
5) Plastic Surgery Consult: even if I do not choose reconstruction at all, let alone immediate, he will be there in operating room to re-plumb any lymph nodes that lose their pathway in surgery if I need some removed, to try to reduce chances of lymphedema.
6) First appointment (intake, not sure there will be any others) with larger cancer center in area to discuss possible second opinion. My breast surgeon explained why they do the one thing differently from how the bigger cancer center does it and I think I like original idea better, so thinking I'm staying where I am but glad to have the information from them. Woman I spoke with there said I can ask them to look over pathology reports after surgery or otherwise pick and choose which parts of my treatment I want where between the big hospital and the one I'm currently working with. Nurse navigator at hospital I'm working through verified this and said they work very well together.
7) First Moderna Covid-19 shot (Surgeon wants 10-14 day gap between surgery and 2nd shot in either direction so likely won't be able to get second on schedule but Primary Care Physician didn't want me going into everything completely unprotected)
Still upcoming:
1) Cardiology appointment mentioned below (April 30)
2) Allergist appointment as I may have reacted to and therefore lost Propofol (usual drug for "conscious sedation") after last cardioversion (severe itching in several places, funny feeling behind nose as it was being administered and as I was leaving recovery area after procedure, hoarseness) (May 4)
3) Review/Planning/Scheduling meeting with breast surgeon (May 7)
4) Another appointment with Primary Care Physician to review everything up to this point (May 12)
5) Dentist appointment (regular cleaning etc.) (May 26) Insurance is very strict about 6 months and a day and last was November 25, so not likely I can move it up, Just left a message at dentist's office to see if they can put in medical necessity override or similar to get it sooner if surgery is scheduled before that..
Side issues:
1) unusually large head (some men's XL hats don't fit) so if I need chemo, finding wigs or head coverings may be difficult and scalp cooling may not be available to me if they don't make caps in my size. Does anyone have any sources?
2) it seems like the only exercise and relaxation activities I can find offered by local resources are yoga and mindfulness, which I have reservations about as I do not feel they are appropriate for Christians. Ideas?
3) getting "so glad you're upbeat, keep it up" from friends at church (doesn't look like there will be room for acceptance of any grieving etc. over diagnosis, body changes, potential treatment difficulties...)
4) somewhat small-busted through most of adult life, so several people have commented "at least you don't have much to lose" or similar when I mention upcoming surgery. Gee, thanks! Real helpful (not!)!
Side conditions:
1) repeated afib, on Eliquis due to this and 2 TIA's (mini-strokes) in 2016.
Thought we did last cardioversion a couple months ago before next step being pacemaker, which cardiologist had said we could likely delay for quite a while before diagnosis came through and pulse went crazy while hospitalized for kidney stone last weekend, as I'm usually relatively functional while in aFib (pulse usually relatively low compared with others who go and stay sky high till cardioverted or otherwise cleared). Back in afib within a week due to medication error by another specialist (whom I've since fired). Now moving up pacemaker or trying 3rd ablation (first 2 lasted 6 months and 6 weeks, respectively so weren't going to try another until this) under consideration. Can't have medical cardioversion drugs (severe swallowing problems and neuropathy from the one they tried on me; others are more dangerous in general).
Any cardiac procedures will have to be done before breast cancer surgery. Plastic surgeon is concerned if I can withstand either combined mastectomies/reconstruction (9 hour potential) or separate reconstruction (6 hour potential), even if cardiac procedure doesn't precede it. One issue of why ablations didn't last is we couldn't find a safe version of the drug they wanted me to take after the ablation (see #3). Scheduled to see cardiologist April 30.
2) Especially since i went back into afib most recent time, husband, who has been laid off for several months, has been afraid of me overdoing, so I've basically become a couch potato. I mentioned "prehabilitation" that I'd seen on the bigger cancer center's website to my breast surgeon at the Multidisciplinary Team meeting, and she said we didn't have time to do a lot but I should get outside and walk for at least 1/2 hour a day. That worked pretty well starting the next Sunday (meeting was on a Friday) till I ended up in the hospital with the kidney stone from that next Friday till Monday and then had intestinal distress (to put it mildly) Wednesday and Thursday from the antibiotics they'd given me in the hospital as they thought the stone might be infected and didn't want me going septic. So I didn't get walking again till Sunday, afraid to be too far from a bathroom. Between my heart issues and my deconditioned condition, any surgery is going to be harder on me than on someone without these issues. I'm trying to do some core exercises as well, but have never been a strong person physically.
3) "difficult airway": my throat collapses if they try to do general anesthetic without intubating me first(!). Quite a process to get me ready for surgery of any kind.
4) several sensitivities to "inactive" ingredients in prescription and over-the-counter medications: swallowing problems develop over about a week of taking medications that have them and I'm already having swallowing problems from various other things so can't afford to make it worse. Therefore will need to check prescribed chemo or AI drugs carefully. Insurance will not cover compounded medications.
5) likely MTHFR issues (clearing toxins, handling plastics and the like), which will affect chemo if I need it and makes me extra hesitant to do any non-own-tissue reconstruction method
6) oxalate issues from colonoscopy 8 years ago (thanks, Miralax!). Many "healthy" foods are high oxalate.
7) Lactose intolerance so i can have milk if I watch how much I have how often but most suggestions about adding calories and protein to diet if I do need chemo start out with "stir in sour cream," "substitute milk for water," or similar.
8) Sensitivity to adhesives, which will affect choice of prostheses if I go that route
9) Neurologist wants my B12 levels higher than usual but I'm reading that supplementing may increase chances of recurrence. Have also been taking fairly large doses of vitamins C and D, which again may interfere with either chemo or radiation, from what I'm reading.
As my husband commented to someone recently, he's the juggler (learned several years ago), but I'm doing the juggling right now. .
Thanks for reading this.
Comments
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Hey good morning,
A couple of thoughts:
Side issues #2 re yoga and Christianity. You most definitely don't have to believe any Eastern religions to have yoga be beneficial. I'm Christian, there's no energy in my big toe, no third eye on my forehead and I do yoga every week. It's an excellent strength and flexibility exercise--when you get to the end in relaxation pose, just use that time to pray.
Side issues #3 re people who are so happy you're happy. Blah. Do you have a good friend other than your husband with whom you can be real about how you are feeling? Also consider taking advantage of any counseling services through your care team. I personally did that, was in counseling for about 18 months and it was incredibly helpful as I navigated how I felt and all the other stuff that came back up as a result of my cancer dx and treatment.
Side issues #4 Best response to that kind of blockheaded comment in my opinion is to look blankly at that person and say without much expression "Wow, just wow." In other words, return that awkward to sender.
Good luck!
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Adding on:
The ILC will determine whether chemo is a player - do you know the size of that aspect of your diagnosis? It may be more likely that your surgical margins are more critical than tumor size, the ratio of tumor to breast size, and nodal status in terms of a radiation recommendation. Since you have bi-lat issues, I would especially inquire about radiation techniques if you require it to the left side since you have known cardiac complications. It is important to note that reconstruction - whether implant or autologous - often requires subsequent surgery, so factor that into your decision making as well. The dental appointment situation is generally pre-chemo (if you need it), not pre-surgery, so that timing may not be an issue.
Side issue #1: Some insurance companies cover custom wigs, scarves are pretty easy to use on a large head - there are some makers that have a variety of sizes available. I used this company (first link) although I never wore scarves outside of my house, I always wore a wig or the hairpiece I had made from my own hair (second link) which used my head measurement as it is custom made. They can also make a hairpiece for you even if your own hair isn't used. I can't speak to scalp cooling as I didn't use it, but there are a number of threads on this site that discuss it. Use the search function and type in scalp cooling, cold caps, etc., and the info will come up. Those folks may have some insights into cap sizes. I have an unusually small head and had no problem finding a wig, and I have a friend with a larger head and she had no problem either, but we live in a larger metro area.
Side issue #2: I have taken yoga classes and also participated in a study on mindful meditation through the NCI cancer center locally and found neither situation to have any religious overtone. Yoga classes through a fitness type situation may differ from a straight-up yoga studio - and that may be why the classes I attended were more exercise based maybe than some others. If you view yoga as exercise and mindfulness as focus, it might remove a religious connotation for you. This is obviously my opinion though and you need to do what you're comfortable with. At the very least most docs associated with cancer treatment universally endorse walking as much as you can.
Side issue #3: I presented an upbeat persona because that was what I chose when talking to co-workers and acquaintances - it was just easier, and I confined my concerns and fears to really close friends/family who would actually listen and support. It took too much energy to provide my truth to everyone.
Side issue #4: Ugh. It would be hard for me to not turn that around on them and ask if that is how they would feel about the amputation of their breasts. Smaller is better/easier/not as devastating? I think not. It is a loss regardless of size. I feel fortunate that I had zero stupid comments - but you are not the lone ranger, many on this site have recounted similar comments. Don't let the ignorance of others get you down.
I can't speak to much of your side condition info other than to say I am extremely sensitive to many drugs, allergic to many, and severely allergic to adhesives. I did tolerate chemo and took letrozole and anastrazole (2 of the 3 aromatase inhibitors) without any allergic issues for 7.5 years. Your situation is complex and be sure to fully discuss with your oncologist. Many centers actually have an in-house pharmacist who mixes the chemo for administration, you may even be able to have a consult that includes them, as I think they would have the broadest knowledge base about your needs. My surgeons had to be innovative with bandaging, tape, even the irrigant used during surgery. I did not get away without reactions, but we learned as we went. At two different points I used a prosthetic on one side, never had an issue as the prosthetic is contained within a pocketed bra so there is a layer of fabric between the prosthetic and your skin, and there is no adhesive component. There is also an organization called Knitted Knockers (link) that provides knitted prosthetics filled with adjustable fiberfil for free to anyone who needs them. They are excellent and very lightweight, were definitely the most comfortable ones I used. If you have a local mastectomy shop and/or fitter they can help you with bras and prosthetics that will work with your sensitivities, might be worth a visit in advance so that you can use that info in your decision making about type of reconstruction considerations.
https://www.knittedknockers.org/
I did not add dairy to increase protein as I am sensitive to it and the targeted therapy I received has GI upset as a side effect. I added red meat, fortified cereal, eggs, and only occasionally cheese.
Good luck, wishing you the best!
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Hi,
Thanks for your reply.
Unfortunately I didn't realize your post wouldn't be available for me to look at while I wrote this so I'm working from memory. Maybe this is why someone I read a comment on another thread last night said they work split-screen: 1 for what they're reading and one for what they're writing.
Very good points on all your replies.
One thing that may make doing what you suggest on side issue #4 tricky is that all of the times I've gotten this comment have been over the phone, and in many cases it's been person reporting what another said to her about me/my situation, so the originator doesn't get the blowback. My husband did tell one person who told us what someone she had told had said that this was hurtful whatever size I am now.
Thanks again.
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If I post an involved answer I sometimes pull up the thread on my phone and then type on my computer, or vice versa if I post a photo or link, which is sometimes easier with the phone. You're right - any comment on size is hurtful, I wish the people saying these things would think before they speak, and their thoughtlessness just adds to the challenges you are facing. Try not to let it bother you, although I know that is sometimes easier said than done. Those of us here who have been in your shoes do understand.
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regarding 7 & 6 - it could be that they don't recommend chemo but even if they do, dairy is not a requirement. I don't consume any dairy or meat or eggs. Unless you're seriously underweight, diet is usually not a problem at all. Chemo nausea is well controlled now - there are tons of medications that prevent it. I'm an easy barfer and never once yet have I thrown up from chemo itself. You can lose your appetite a bit but there are tons of other things that are nutrient and calorie dense which can be added to your diet. If you're struggling maintaining weight or worried about designing a meal plan, many cancer centers have a registered dietitian on staff who can help you design some meal plans & tweak them within your food restrictions.
regarding 9 - I'd just make sure your oncologist is aware. These things are always balanced on risk/benefit. The pharmacists at the cancer center are also great resources and can do research for you so your team can make an evidence based decision.
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Totally forgot to speak to the dairy part. I'm vegan, there are all kinds of non-meat/dairy options for getting enough protein. Some come ready made (Dr. Praeger's high protein burgers are in the freezer section and I found them quite good). If you aren't sensitive to peas, pea protein comes powdered and in various flavors. In fact, I'm getting ready to have a glass of almond milk w/ chocolate pea protein in it as I never get enough protein (and didn't when I was a meat eater!).
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Hello SpecialK,
Thanks for your reply, especially all the links.
The ILC and one of the DCIS's are both about 4.9 cm (just reading pathology reports on another device as I'm doing this letter on my laptop). The ILC isn't straight 4.9 but adding the definitive area to the iffy area somewhat away from that it comes to 4.9. If I'm understanding what I'm reading, I have both DCIS and LCIS in the ILC lesion area.
My breast surgeon presented bilateral mastectomy as essentially my only option, based on breast to tumor ratio. Removing a 4.9 cm lesion from the left breast wouldn't leave much. With the ILC in the right breast, that one was likely going to be recommended for removal regardless of lesion size, and a friend of mine who had no pathology in her left breast but 3 ILC's in her right was told there was a 20% chance of recurrence in the left so decided on bilateral mastectomy. She was able to avoid both chemo and radiation in the process.. Depending on what they find during the mastectomies, I may or may not be so fortunate.
My radiological oncologist already mentioned that they will have to do any left-sided radiation more carefully than right because the heart is directly behind where they may be radiating. This would go for any of his patients. I think I bookmarked something about a special procedure or device for left-sided radiation the other night when reading on the bco site, but I bookmarked a lot of things so will have to go back and see what I can find. The search feature has been very useful also.
My plastic surgeon mentioned that reconstruction is a multi-step process, but I appreciate the heads-up in case he hadn't said anything about this.
As far as timing on the dental appointment, I'm thinking that it would be easier on me to get it out of the way before surgery, as it's about a 10-mile trip each way, and the roads aren't exactly the smoothest near the end of the drive.
With regard to side issue #1, we have expanded Medicaid so my guess is custom-made anything will be at least a fight, if not immediately disallowed, kind of like them not covering compounded oral medications. A relative said grants may be available for anything I need in this process, specifically speaking about various forms of chemo that our insurance may not cover, but I may be able to find funding for head coverings since "OSFM" (One Size Fits Most) or even "OSFA" (One Size Fits All) doesn't seem to apply to me as far as me being a "most" or "all" regarding head size.
With regard to side issue #2, I appreciate your contrast of yoga studio vs fitness class settings. I'll have to investigate the programs in this area and see where they fall on this continuum. Yes, walking is a good exercise, and I've even seen a few posts that a 1/2-hour walk on chemo days helps with side effects there.
I can see the value of your approach to side issue #3. We met up with an acquaintance from our previous church (switched 14 years ago) in the grocery store yesterday. We caught up on ages of kids and the like but said we were "doing well" or similar words. I didn't think she was the right person from that church to be informed first about my diagnosis. We are currently attending (already via Youtube due to various factors even before my diagnosis) a relatively small church (total pre-covid attendance probably 80-100 for Sunday morning) and while the women involved in the discussion (Zoom meeting after the service) are not exactly my closest friends, it was still unsettling to hear that comment. As there were 3 of us in the frame for our camera instead of just me, they couldn't see that I was fighting tears, especially when they said what they did. I think your comment about "energy" here is very helpful, as part of that energy would be used up dealing with comments like in #3 or #4.
Regarding side issue #4, I have usually been too hurt/shocked to respond at all. The strangest thing was that one of the people who said it to me is actually a breast cancer survivor herself (unilateral mastectomy in the 1960's, recent lumpectomy), and is a dear Christian friend. I'm not sure if she was just not sure what to say or if, like my mother who is a few years older (early 90's, this woman is in her late 80's), age has weakened her filters about what she says. Most of the others have been relatives who are not close by distance or relationship, but in at least one case still somewhat surprising.
As far as side conditions, i would be surprised if any of my "no-no" inactive ingredients would be injectable meds, but anything is possible, so I think I'll make some inquiries if I do need chemo. I'm thinking more of any pill-form chemo or the AI's. I already checked and Tamoxifen doesn't have any of them, but I also saw in the official prescribing information that it may cross-react with one of my heart medications, so I'll want to talk with my cardiologist about that. He'd recommended me switching to another before all this started and I heard from one of the workers while I was in the hospital this weekend that it does well for her regarding similar symptoms, so it may be something to look into if there isn't a long dose adjustment period.
Yes, I'm aware that many prosthetics do not make contact with the skin. However, I've read that others are attached either by adhesive directly between the skin and the device or adhesive strips that hold a magnet in place that hooks to a magnet on the device. As far as the Knitted Knockers, I've seen various things about them, but at least one person who's been down this path before me said they didn't work for her/she didn't like them, so I'll have to look into them more. I like your idea of seeing if I can get a pre-surgical visit in with the one that's at our breast center. Normally it probably wouldn't be a problem, but in time of covid there might be some hoops to jump through to get in before need.
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Hi Moth,
Thanks for your reply. I was already making a list based on my reading from this weekend of who to ask which question to. The one about the supplements will be going to both the Medical and Radiation Oncologists, as I saw things about both being affected by supplementing various vitamins.
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Hi,
Thanks for the addendum (hitting "send" is great for catching typos and "I forgot to say...," isn't it? Sure is for me! :-))
I realize there are ways to get protein without dairy milk. Many of the alternatives run into issues with one of my other restrictions, however, so it's going to be a balancing act. Almonds, as well as all other nuts, are high oxalate, so I have to choose my alternative milks if I decide to use them, very carefully. If I'm not mistaken, dairy milk is the highest-calorie-per-unit-volume of the various "milk" products, so as I'm not completely unable to handle it, I will hopefully be able to use it sometimes. I went looking a couple weeks ago and name-brand "Lactaid" pills have one of my "no-no" inactive ingredients in them. Fortunately, at least one version of a certain drug store's generic equivalent is safe for me, so hopefully I'll be able to use that.
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Hi edj3,
As i said, hitting "send" catches all sorts of stuff.
I saw your mention of almonds and missed the thing about chocolate. That's also a high oxalate food. Not only are the "healthy" foods often high-oxalate, so are many of the "fun," not-so-healthy ones. We have a family member who needs to keep things within certain bounds as far as FODMAP issues, and as we cook together (only 3 in family), it has to be something everyone can eat or we have to be able to adapt things so we can each get what we need (2 pots of pasta when we make spaghetti, one gluten-free, the other regular wheat noodles, for example). Adding whatever restrictions I may have based on appetite, nausea, etc., if I need chemo and subtracting whatever energy deficits I may have to prepare things ought to add to the adventure. At least we live in a large enough town that we have resources for the special foods she needs without having to resort to pricey boutiques or paying shipping on mail order.
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You probably already know this, but plant-based milk can be made from other things. I like oat milk ok, I never got into soy milk but those are there if they aren't on your no no list.
Same thing with the pea powder. I happen to prefer the chocolate but the brand I use also offers what's called a rich vanilla and I think they've got some sort of fruity flavor too. I never cared for fruity flavored milk so that one is a no go for me.
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A small note on yoga and mindfulness... I am not a Christian but yoga and mindfulness are not religious practices. I am not sure what would be objectionable to Christians. I am a public school teacher and I teach yoga to all of our grade 1 classes. If there were any type of religious aspect to the practice then I would never teach it at school. Both are wonderful for relaxation and stress relief and yoga is a very individual practice so you don’t have to fret about being “good” at it. As someone once told me, yoga isn’t about getting better at yoga, it’s about getting better being you!
Yoga is not everyone’s cup of tea but many find it to be a great, natural de-stressor. Take care
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Your treatment center and major hospital sound very supportive. Do either of them have a social worker you could access? If not, one program I used is Sharsheret. It's a Jewish organization but they help everybody.
I think a social worker could be great for you. They are really good at finding and connecting to resources, including grants, and helping with the paperwork. It sounds like chemo is a bridge to potentially cross later, but still, it might be good to already have the relationship. They might also be able to help you to find mindfulness or yoga or other integrative health supports that align with your religious beliefs. If you are in a heavily Christian area, I wouldn't be surprised if there were already practitioners offering those kinds of activities even with a specifically Christian orientation. If you are open to online classes (not as good, of course, but still something), Christian yoga and Christian mindfulness are out there.
Regarding #9 - that seems like something to talk with your oncologist about. They may be able to weigh in with their reading on the risks of B12 supplementation. I also wonder whether dietary B12 could help make enough of a difference. Your oncologist might actually pick up the phone and talk to your neurologist (or vice versa) to help give you the best information for risk/benefit analysis.
Good luck!!
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Hello,
I am very familiar with drugs and especially drugs related to cancer treatment. Intravenous chemotherapy regimens normally come with diphenhydramine &/or steroids. This is not because of allergic problems, rather it is due to normal expected side effects that need to be managed. You say you have 'oxalate' issues yet don't say what they are. However, you also say you are taking high levels of Vitamin C which is metabolized to oxalate and can actually lead to oxalate nephropathy. There seems to be a disconnect here. The B-12/cancer risk theory has been debunked. I'm not sure why a neurologist would want an extra high level of B-12. It is a water soluble vitamin in which anything your body does not use will be excreted in the urine daily. On the other hand, Vitamin D is a fat soluble vitamin and excessive intake can indeed cause problems.
You have lots of barriers you seem to be putting in place before you even know the path you will be taking. Your physicians have had 15+ years of education and your pharmacist close to 10 years. However, it doesn't seem you are willing to trust them and let them do their very best for you. I can tell you have great faith. I hope your faith allows you to recognize God's gift to your providers, who want to give you the best care they can.
All the best,
Jane
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exbrnxgrl just an FYI that for some, yoga absolutely IS a religious practice. One of my best friends in grad school follows an Eastern religion (sorry, I don't remember which one) and yoga plays a big part of his religious practice.
All that to say, it doesn't have to be religious in nature. And I agree w/ exbrnxgrl that yoga as a form of exercise will strengthen you a lot and will also bring some calmness into your world.
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You've gotten some great responses (I skimmed so apologies on repeats).
Did they do a SNB yet or is all the data from a biopsy? How old are you? The TailorX study may give you some help in chemo decisions.
I am athiest/agnostic and I do yoga. It hasn't warped my mind to believe ;-) If you think of it as a well rounded Pilates (ha, note that spelling, LOL) class, maybe you won't be as afraid of it.
As for the covid vaccine, I just had my second dose on Saturday and am JUST starting to feel human...it really took it out of me...The first one, I also reacted to...so I can see why your doc doesn't want you to have surgery AND the vaccine. Your body needs time to heal from one or the other--my 2 cents. Some have zero reactions, but you still want your immune system to have a chance to do what it needs to.
Best to you and so very sorry you are joining us.
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edj
Perhaps I did not express myself properly. Yoga does have it's origins in Hinduism but it is not a religion and it's practice can be and is completely secular for most. I think the comparison to martial artsbetter illustrates what I was trying to say.
Is Yoga Fundamentally Religious?
Although yoga is mostly practiced in a secular way, many people find it spiritual. However, this doesn't mean that yoga is fundamentally religious. It's a philosophy that's all about promoting health and living a harmonious existence. Yoga is about improving the mind-body connection and achieving inner calm. Also, although yoga can be a wonderful introduction to a spiritual life, and can even deepen existing faith, it does not require any particular religious beliefs.
Yoga's Hindu roots are sometimes a source of confusion. According to Dr. Mary Pullig, yoga's connection to Hinduism is likely to have led to the misconception that yoga is a religion. However, as Dr. Pullig explains in her book, Back Care Basics, "Just as the practice of the Japanese martial art of karate and aikido does not require becoming a Buddhist, the practice of yoga does not require you adopt Hinduism". Instead, she explains, yoga is all about cultivating peace.
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Oh I agree, exbrnxgrl. My friend from grad school would argue with you but he's not here.
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Hello exbmxgrl,
Thanks for your comments about yoga. Helpful to have the various perspectives on this as well as other topics.
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Hello Salamandra,
Yes, the center I'm working with has lots of support, as does the larger hospital across town. I know the former has a social worker, but haven't called her yet. The kidney stone (and subsequent bathroom issues from the antibiotics I got then) pretty much lost me a week of contacts except the prescheduled stuff.
Thanks for the information about Sharsheret. I just looked at their website and facebook page and signed up for a webinar a week from tomorrow.
Unfortunately I am in a rather secular area, to put it mildly.. Not that there are no relevant resources, but it's harder to find them than in other places.
Fortunately, my neurologist, oncologist, cardiologist, pulmonologist, breast surgeon, plastic surgeon, and several other current and new specialists are all under the umbrella of a larger organization. The patient portal for that is also the same as for the hospital I'm mostly working with, so I've got much of my records etc. all in one place already and there is good communication between the various specialists. I left a message for my neurologist this afternoon about the b12 issue. My plastic and reconstructive surgeon already said he's going to consult with my cardiologist to see what he thinks I can take as far as surgery. I see my cardiologist this Friday as both follow-up to my heart issues while hospitalized for the kidney stone and as a pre-surgical clearance for at least my breast surgery, let alone whatever else comes after that.
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Hi Jill,
Thanks for reaching out. I'm glad especially that you mention steroids, as that was the drug class that put me back into Afib a couple months ago, so I'll have to find out what the likelihood of needing them later will be and discuss it with my cardiologist this Friday.
My "oxalate issues" are primarily itching in personal areas, but I wonder if at least some of my lesions are oxalate-related. I had been dealing with the itching etc but still eating a fair number of high-oxalate foods (no broccoli,, non-red-skin potatoes, green beans, etc.) till I realized it could be a factor in my lesions, whereupon I cut way back, possibly too fast (hence the kidney stone?).
As far as the vitamin C, yes, I'm aware of the link/metabolism into oxalates, but with Covid rampant where I live and me having several issues that would make me have severe difficulty if I were to get it, I figured better itchy than dead or severely impaired. I have a friend who's over a year now with long-covid and have several friends or acquaintances who have lost family members to the virus.
As far as why I need higher B12 than most, I tend to have tingling in various places that the B12 seems to help. As I mentioned in another reply a few minutes ago, I left a message about this with my neurologist's office earlier today, but haven't heard back yet.
The same line of thought as regarding the vitamin C has caused my taking extra vitamin D, as far as the research showing many who get severely ill with Covid are deficient in this vitamin. This is true of other viruses, including seasonal flu. I read an article years ago that a psychiatrist in a forensic hospital prescribed vitamin D supplements to all the patients on his caseload along with whatever psychotropic medications they needed. When influenza went through the place, killing many other patients, I don't remember the specifics but essentially none of his patients even got the sniffles.
Unfortunately, the "barriers" you mention are from "once burned, twice careful" experiences I've had with various medical professionals over the years. In just the last month I have fired one of my specialists (and the issues I discussed about this person with the office manager of that practice went to the "compliance board") and am in the process of firing another. The latter situation is such a mess that I ended up speaking with the medical director of the specialty clinic this person is part of at a large teaching hospital about my concerns (both issues in patient care and dishonesty in the report he sent my primary care physician as far as what his recommendations are for continued care and what he was supposedly monitoring when I had my second visit with him). Suffice it to say, among other things, he had dismissed my concern about a certain thing I'd come to see him about by telling me it was "nothing to worry about" because it wasn't caused by the issues he specializes in until I informed him I'd been diagnosed with breast cancer shortly after our second appointment. His response through one of his nurses to my message that I hoped he was correct that it was "nothing to worry about" was that he was sorry about the diagnosis, but I needed to make sure my oncologist was aware of this thing so they could determine if it was either primary or metastatic cancer.(This was the one place on my bone scan that they brought me back for additional studies, and fortunately it's ok, but still...) As i told both my husband after listening to the message the first time and the medical director of his department in our recent discussion, this was the perfect example of a "CY___" response.
There's a saying that trust is earned, not given. The two examples in the previous paragraph are just the most recent times that I've seen that I cannot give my trust to various medical professionals without checking up on what they say or do. Yes, they have however many years of experience in their field, but that does not mean that they are foolproof, even if not as incompetent or whatever as the two I've fired in the past few weeks have shown themselves to be, or have anywhere near the experience with my specific issues as i do. One of the nurses when I was in the hospital a couple of weeks ago commented that he appreciated how "involved" I am with my care. Ashe was trying to figure out a polite way of saying why he felt I was this way, I supplied the term "challenges" as far as the things I deal with that require me to be so involved. This is particularly the case with medication issues.
Fortunately, none of my sensitivities are anaphylactic, but after my first cardiac ablation they gave me a medication that night and again the next morning that had one of my no-no's in it. They said "but we checked your list" when I checked the ingredients after they gave me the code on the pill and asked why they were giving it to me. Yes, they had, and I'd even given them a new copy of my list at their request before that procedure and the one that preceded it, so I couldn't understand how the error had occurred until I saw my discharge papers. I had put down "____, [ending in "-one"] (in oral form)" on the list and this had been recorded as something with a similar name ending in "-ine," that is a topical medication. As my husband and I met at a book compositor where typing accuracy had to be better than .75 (less than 1) error per *thousand* keystrokes to keep your typing job, people failing to proofread even memes, let alone medical materials, drives me nuts. General paperwork errors are also rife throughout the medical world, as proofreading seems to be a lost art. I could give several more examples from my personal experience, but this is already long.
Before my second cardiac ablation, the waivers for the surgeon for it and the procedure before it both had the same anesthetic (conscious sedation) listed as what they were going to use. Their defense was that sometimes those in atrial flutter can have the second procedure done that way instead of with general anesthetic. I had been in atrial fibrillation for several weeks if not months at that point, so it didn't apply to me at all. They were unable to get me a correct waiver to sign. As I mentioned above, being that I have a "difficult airway" that makes general anesthetic require several special procedures most others don't require, it was even more important in my case than it might be in others that the type of anesthetic to be used was specified correctly. The waiver for the anesthesiologist was correct in this regard (conscious sedation for the first procedure and general anesthetic for the second). However, when I showed him the letter saying what he would need to do per the anesthesiologist when this problem was discovered to safely anesthetize me, he had to get someone to get into the old system to see what they'd done for my first ablation, only about 18 months before, as the information had not made the transfer to the new medical records system the hospital started migrating to about the time Covid hit. Sure enough, it was the one outlined i the letter I showed him (from the other major medical center in our town so not easily available in the hospital system I was at's medical record system).
I wish that I could trust that the various providers working with me "want to give [me] the best care they can". Unfortunately, I have seen too many cases of incompetence, uncaring or ignorance to be able to do this. My dad had a saying that I keep repeating whenever I run into issues with quality or similar things: "you only get what you supervise." I ended up asking one of the other providers at my primary care physician's office when I get to start charging a consultation fee for all the checking and following up I have had to do even before this, let alone now that I'm faced with a cancer diagnosis. As was said by President Reagan about the nuclear disarmament monitoring they did with the USSR, "Trust but Verify" seems to be what I have to do.
As I mentioned in one of my replies above, I even found a rather glaring error in my main mammogram report, in that they have the word "left" twice in relation to lesion(s) in my right breast. This is after they mention in several other reports that they had to correct location designations in them, which may explain why I thought I was confused about where my second lesion is in that breast when reading the other reports as contrasted with the information I recorded from the first day I got the call from my nurse navigator that all 3 lesions are cancer. That is, she told me that one was in the outer part of my right breast and now the reports say it's in the inner area. As one of the two lesions in that breast is the Invasive one, I suspect it will be very important I know which lesion is which as far as location, especially if I end up needing radiation because of either its appearance during my surgery or the pathology reports.
If you have had providers that have not made any errors so that you have been able to fully trust their work with you, I am glad for you. Unfortunately, as explained above, this has not been my experience.
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Hi Wallycat,
Thanks for your reply.
Results so far are from 1 mammogram-guided biopsy (left breast) and 2 ultrasound-guided biopsies (right breast). My breast surgeon does the dye injection at the start of the main surgery then does SNB before proceeding, with additional lymph nodes removed for pathology as needed. Depending on what things look like during the surgery, I will probably have an Oncotype DX test done. This is the first I've heard about the TailorX study, so I just bookmarked the website for it on my phone to look at later. This is one of the many valuable aspects of a discussion board like this: everyone has a somewhat different experience/knowledge base, so when people share the newbies like me have additional information to inquire about when they speak with their providers.
By the way, I'm 63, and about 10 years post-menopausal (natural menopause).
I got my first Moderna shot the morning I ended up in the ER and then the hospital from that kidney stone. Much as it was most likely unrelated, I noticed the next day my shoulder and arm were sore and the nurse who checked it mentioned that it was also somewhat swollen. I'm not sure what will happen with the second one. My husband got his first last Thursday and our daughter should get hers sometime this or next week. As I have my next appointment with my breast surgeon on May 7, I'm concerned that one of them will have their second shot about the time my surgery is, so possibly be knocked for a loop about the time I have it or am due to come home. Could make for some interesting times! :-)
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CaNyInNjMi, good luck. The start of the journey is always scary. I do not blame you for being cautious with medical care....I fired my first oncologist because he wasn't listening to me. My second oncologist actually asked me to bring him research papers (my grad degree is library science with a focus on medical librarianship) and admitted that some things I was inquiring about were too new and he didn't know; fast forward, he actually thanked me (a shock) when he came back from the big cancer symposium in Texas, feeling he had more knowledgeable on newer things (that was almost 15 years ago) like cyp2d6 and tamoxifen metabolization. So there are doctors that listen; finding them is the hard part.
I developed "covid-arm" after my first vaccine...light rash at and around the injection site; the arm hurt for well over a week; the lymph node under my arm swelled for over a week. My second shot (saturday) and I still feel under the weather. I had the injection in my thigh and am still mildly hobbling. All the aches and pains are gone but I still feel like i'm getting over a flu...drained and tired.
I'll end saying that the biopsy results are preliminary and scans are preliminary. You won't really know much till they get in surgically. My initial grade was a 1 upon biopsy but changed to 2 after surgery. My scan (MRI was the only thing that picked up my mass) said 7mm but my actual tumor ended up to be 1.8cm. All that to say that you really cannot do much planning till you have all your cards in front of you.I hope your surgery goes well and uneventfully and that you get more pleasant surprises than scary ones.
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