June 2019 Surgery Support Group
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Saltypepper - we only moved to this area (Phoenix, AZ) a year and a half ago, but I have a friend whose lived in the Phoenix area for many years. About 8 years ago, she was diagnosed with Stage 3 lung cancer (she's a former smoker). She had part of her lung removed, lots and lots of radiation, and basically 3 years of chemo. The last 18 months of her chemo was "maintenance chemo," where she'd go in every 3 weeks for an infusion. A friend of hers who'd previously gone through breast cancer recommended this one naturopath in Scottsdale, so she started going to see him. She swears by this guy. He's on the state naturopathic medical board and is a naturopathic oncologist (naturopathic dr who specializes in cancer). His philosophy is to not replace regular oncology treatments, but to help it and supplement it, believes in the importance of ensuring that your regular oncologists that you see get copies of the naturopath's records so they know everything you're taking, etc. This particular naturopath only sees cancer patients, so the next time I go to his clinic in 3 months, I'm switching to another naturopath in his office since at that point...because I won't be doing ongoing chemo or radiation.
So my friend who used to have lung cancer said that the cocktail of supplements that he had her taking really helped her physically feel better and helped her deal better with a lot of the side effects from the chemo and radiation that she went through. She would see him periodically and based on her changes in side effects, etc., he would change dosages of supplements, take some supplements away, add others, etc. She said that it wasn't cheap. In my case, it hasn't been cheap because regular medical insurance doesn't cover it so I've had to pay for this out of pocket.
He speaks at a lot of conferences about naturopathic medicine. I can call their office tomorrow and ask if he knows of any good naturopaths in the Chicago area. Maybe we'll luck out and he knows of someone!
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Count-
Thank you for all of this information! I spent some time looking last night and think I found something very similar to what you have described here. It is a whole program through NorthWestern Hospital that partners Naturopaths with all of the different speciality areas and they have an oncology provider and group!
Please don't go out of your way and spend a time hunting this down, I can do the research too! You have done plenty taking the time to explain your process and help me understand more.
Much appreciation for doing this!
Karen0 -
Karen,
So sorry to hear about the extra chemo. Hang in there.
Yndorian hand in there as well. Hopefully the pain will be gone soon.
I am exhausted from going back to work last week but at least this week has been a little better.
Day by Day, hugs to all,
Scottie
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Hi all? How are you doing today? I hope you are well. I realized that my pain decreases when I take clonazepan (tylenol or ibuprofeno doesn't work at all). Saddly I can not take clonazepan every time I'm in pain, but It helps at night.
Why it is still so painful? I'm almost 5 weeks after my surgery. I feel like they touched a lot of nerves. I still waiting for my path results but I'm not in rush for my rads!
Have a good day!
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Ynodorian- I am so surprised that you still do not have your pathology back? Is it normal where you are to wait so long, I would be going crazy! The nerve pain is real for me as well still. I can wear a shirt most days. But others it feels so raw I can't stand myself. When they were cleaning my expander ports for my fill yesterday, I about hit the ceiling.
But, I don't feel like I need pain meds. It is more like intense irritation most of the time. Maybe talk to your doc if you still feel that much nerve pain?
Thanks for the kind words from everyone.0 -
Hi SaltyPepper: glad to hear you are doing well without pain meds. And yes, all that medical stuff takes a long time here (social security has very much people). I am not worried about the results of the pathology. I have to do rads and tamoxifen anyway. But I need to present that documentation to request the rads, and that also takes time, so, if they don't call me this week I will go to talk with my SO without appointment next Friday. My scar is healing well, but all the skin that surrounds it, is hard like a rock. I will also consult for that.
HEALING HUGS for all of you, surgery partners!
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Yndorian1 - sorry to hear about your nerve pain! That must be so very frustrating! Hang in there!
Hope everyone who's doing radiation is doing well. How is it going for those of you who've started radiation already?
I had another fill with the plastic surgeon this morning. My exchange surgery is scheduled for late August. Woo hoo!
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Countdooku, I'm jealous!! I had surgery the exact same day as you and have TE as well. Im having my second fill on thurs.
I was told 3 month MINIMUM before exchange surgery... and I think 1 month from last fill to exchange... Does that sound right? or is it different among plastic surgeons. Anyhow, I'm impressed. No radiation for you? No chemo either?
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Countdooku- that's exciting about the exchange surgery!! Have you talked to your PS about the size of your perms?? I've heard, and going off my perms, I think they can be smaller than the TEs depending on how much you expanded.
I hope everyone is doing good and keep up the fight to kick cancer's as!!🥊🥊
~Katie💗
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My last fill will be at next week’s appointment. So far, my skin and everything is tolerating the expansions pretty well. The surgery will be one month after next week’s appointment. One of the nurses in the office has the BRCA gene and she had a bilateral mastectomy because of that. This surgeon did her reconstruction and she said that she’s been really happy with the results of it.
Med oncologist and breast surgeon said no chemo or radiation required because:
1. Tumor was DCIS and no invasive cancer anywhere.
2. Sentinel lymph node biopsy of 2 lymph nodes showed zero cancer.
3. And since I had bilateral mastectomy due to ATM gene mutation, no need to take Tamoxifen.
4. No need for future mammograms because there’s only 1-2% of the breast tissue left but they recommended self exams.
I am still seeing a naturopath. He called a couple of days ago and recommended to start taking this expensive supplement called Pectasol-C, which apparently has had a lot of medical research to show that it reduces inflammation in the body linked to some molecule called galectin-3. Well I’m not independently wealthy, haha, and I have medical bills to pay so this supplement will have to wait until next month.
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Hope everyone is having a good day. That is great that you get to skip chemo and rads countdooku! I'm back at work this week and mentally feeling great --pain wise by the time 3pm rolls around I'm pretty sore under my arms. It feels like I have 2 sandpaper golf balls pressing my sides. Tylenol helps.
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2019whataye... - I'm going back to work this coming Monday!
I had another physical therapy appointment today. Based on how great it's been going with my stretching exercises so far, I thought that today would probably be my last appointment and I would get to cancel the next two weeks' worth of appointments. Nope! The physical therapist said, "Great! Now do these new exercises." You guys...the new ones are harder to do. Which is good, I suppose, because it means that I'm closer to having normal range of motion in my chest & shoulder muscles.
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Countdooku - hard for now but easy before you know it!
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Hello everyone! This thread is very quiet, I assume it is because you are all doing well! Today I received the results of my pathology (finally!) Not so good news. Despite the neoadjuvant chemo I had 4 positive nodes. I still don't have a date for rads.
On the other hand I am not so sore and little by little I am regaining range of movement in my arm. A hard scar tissue has formed around the incision. I have to massage it. That are my news, I hope you ladies are well. HUGS!
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Sorry I'm late! I had surgery five weeks ago today, on June 24. Most of my results were good. I am seeing the medical oncologist in two days, she should have the genomic test results and then I'll know if we're looking at chemo.
My breast surgeon hasn't mentioned prosthetics. How far down the road will that be? I'm not getting reconstruction. I am knitting a fake boob for when I start wearing a bra again. Baby blue fyi.
Lately I've been noticing muscle pain (?) above my scar, it's not really responding to Tylenol. Otherwise I'm mostly okay.
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I don't know average, but my surgeon says he never leaves them in longer than two weeks.
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Sonia,
Huge Hugs. So sorry about the nodes. If you haven't already join a rads board for more support and info. Glad you pain is better and ROM is returning. My pain is slowly getting better. If I would stop overdoing things. Hard to T-Rex at. Work but I am still not cleared for lifting. Keep us posted we are still here.
Go Mama Welcome!
Best ccx Wishes for your genetics and love the idea on a knitted knocker. I'm not sure about timing of prosthetics but I'm sure BCO has a discussion board for them.
My onco "MO" is now insisting that I switch from Tamoxifen to Femara. Not happy about that but need to find a good support board for it.
Hugs all let us know how you're doing,
Scottie
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GoMama, I have appt in a week so that will be about 7? weeks since my surgery and at that appointment they will give me the info on getting prosthetic boobs.
Sonia, boo that totally sucks. xoxo.
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Yndorian1 sorry to hear about the nodes. Hope your rads go well for you.
GoMama Back in April I had one of my expanders removed. I bought a prosthetics on Amazon and a bra. Worked for me but I only needed it short term as I had the expander put back in June 17th.
Scottiemom11 I have been on Fermara for 3 months so far so good no side effects. Hope it works well for you.
I had another fill yesterday and next week they may do one more. The skin is getting thin on the right breast (which was radiated 15 years ago). I may have reached my limit at 450cc.
I also had a follow up with my thyroid surgeon. I had my left thyroid out 7-12 and it had thyroid cancer. 7-22 I had the right side out and yesterday I found out no cancer on the right and none in the two lymph nodes they removed. The first good news I ave heard in 8 month. It has been a struggle getting back to work. I put in my fist 8+ hour day today since January and it was exhausting, I have had adrenal insufficiency since my DMX in April and having 5 surgeries in 3 months hasn't helped. Learning to keep the work stress to a minimum but it is hard as it is a busy time of year for us. Thankfully I am getting a lot of down time when at home. Wishing everyone the best.
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I had a look at silicone boobs on Amazon. They're very...flamboyant. I learned today my insurance will cover one every two years and I think four bras per calendar year. I will be calling to make an appointment tomorrow.
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Sonia, glad you're feeling better and getting some range of motion back. Sorry to hear about the nodes. Hugs to you!
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hibeclens actually gave ma a rash. Too harsh for my sensitive skin
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So, a bit more than four months out from my mastectomy (right), I find the intermittent pain around the incision is getting more frequent. Some days it's off and on for hours at a time. A few weeks ago, I felt a jolt in the area where the nodes were removed, like an electric shock, that lasted maybe four or five seconds. It was really odd.
Is it just me? Is this normal? I mentioned it at my last MO appointment but got no response, and I don't see my breast surgeon again until late December.
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Hey there I had a BMX no recon- 6/24. Have not had any pain around scars since like late august. I would call BS office- can't hurt to call now esp. if you are in pain.
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Go Mama,
I also recommend calling your surgeon. It sounds like intermittent nerve pain but there are options to help and your breast surgeon can make that determination.
Hugs to you,
Scottie
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