Just getting started

LiveLoveLaugh2020

LivinLife - I'm glad your surgery went well, wishing you a speedy recovery and good path report!

LivinLife

Thanks so much LiveLoveLau...!!

LivinLife

The appointment yesterday went fairly well. The P.A. would only take two drains out even though one of the remaining ones has been under 30 for 2 days (24 ml) and the other under for about 36 hours... I understood her reasoning though one of the remaining ones has very little in it since last night and the other will still be under 30 today. She wanted me to drive back to Cleveland next week (4 hours one way) to have them removed. I am a frequent flyer at the local wound clinic where I live so am working out something with that - the P.A. expressed being ok with that.

The wound vac negative pressure gadget worked beautifully on my incision. so much of yesterday's appointment was getting that and all the "Laffy taffy" as they called it sticky stuff unglued from that, the tegaderm and me. The incision was different than what me and the surgeon talked about. It goes from the back of one armpit all the way across my chest to the back of the other armpit. I'm still processing that though am basically ok with it. She kept things very tight and I believe avoided all dog ears. I also wonder if she wanted to get out additional tissue though she has been on medical leave since my appointment so I will never get to ask her that - not interested in asking anyone else.

The final path report showed something very different than the diagnostic mammogram and breast MRI. The latter two showed up to nearly 5 cm of DCIS. The final surgery report showed 1.2 cm Grade 3 with comedo-necrosis, cribiform and micropapillary types, with what seems like the remaining, as well as other areas of my left breast (?) showing various precancerous (including some rare ones) and benign issues in ducts and lobules. No invasion and then of course no lymph node involvement. The P.A. said my surgery choice was a good one given all the various issues that showed up - she said it would've led to biopsy after biopsy after biopsy and then likely related surgeries. I do have a follow-up telemed appointment with the surgeon's P.A. in two weeks just to make sure all healed well, etc. I already had a follow-up telemed with the oncologist and will keep that out of respect. I do believe I am done though. I will keep up with breast self-exams because at least one of the precancerous conditions is one that seems aggressive and sneaky. Hopefully it's all out of my body though I've learned from family experience and on this site never to fully count on that. Overall though I feel very good about where things are - just focusing on healing and getting my energy back the next month or so now. Yesterday's long day took a lot out of me!

Colleen_2

That’s too bad that you only had 2 drains removed but I’m glad to hear you hopefully won’t have to do the 4 hour drive to get the others removed. I’m glad to hear your results were good. Hoping the rest of your healing goes smoothly!

LivinLife

Thanks so much Colleen! I hope you continue doing well too!

LivinLife

Even though I had a BMX with SNB no invasive cancer present it seems I may still be followed at regular intervals by my surgeon and MO for some time. I understand that when people have had lumpectomies or very active types of cancer though thought I would be done with my surgeon and MO after my next appointments later this month. Then I saw additional plans for follow up appointments in progress notes? I ended up having much less going on than initially thought though there was much more precancerous issues present upon surgery pathology. I guess I just don't understand the need for follow-up or not if it will last the 5 years I hear others talk about. There can't be mammograms or MRI's to talk about.... Any insight or feedback would be appreciated.

Beesie

LivingLife, you are in the States, right?

The NCCN Guidelines suggest that after a BMX for DCIS, a physical exam be done every 6 - 12 months for 5 years. But there is nothing said about who should do that exam. I'm in Canada, and around here, it's pretty unusual that both an MO and surgeon would continue to see a DCIS patient who had a MX and is not on endocrine therapy. As I recall, I was given the choice of seeing my BS or MO for my first follow-up. After that, I was transferred over to my PCP for the rest of the follow-ups. Importantly, my MO was always just a phone call away. There was one time, years after my diagnosis, when I had an incidental finding on an breast MRI (I had a UMX and implant reconstruction, so for a while I was getting regular MRIs) that showed a spinal lesion (I had DCIS-Mi, which confers a tiny risk of mets). I was in to see my MO within a few days and the issue was resolved by the following day - my MO had their spinal imaging specialist look at the MRI; thankfully it was nothing serious.

This is just my opinion, but from having spent so much time on this site, I'd say that in the U.S., where doctors are individual profit centers, there are some patients (certainly not all) who seem to get a lot of unnecessary testing and follow-up, usually all done at their own doctor's facility. I know I'm biased, but I don't see good care; I see dollar signs. I lived in the U.S. for a few years, and one time I developed a lump. I knew it was probably a cyst because I developed those regularly and they tended to be large and pop up out of nowhere, as this one had. My Gyne sent me for a mammogram and ultrasound and then referred me to a breast surgeon. The BS wouldn't see me unless I had the imaging redone at her own facility, and that couldn't be booked for 2 weeks. Seriously? I happened to be heading back to Canada for a few days so I booked in to see my BS in Canada (with the number of breast issues I'd had, I had a BS on speed-dial) and everything was resolved in one appointment and about 3 weeks more quickly. It was a large cyst and my BS aspirated it.

After a BMX for DCIS, I can see having one 6 month and then annual follow-ups with either the MO or the BS, so that you have an expert doing the physical exams. But anything more than that seems excessive and unnecessary to me.

LivinLife

Thanks so much for your response Beesie! I agree with you that all these appointments are often about $$. I like to think most (not all) providers care as well though institutions often dictate overkill or lack thereof, depending. Your experience in the States is unbelievable and yet not, unfortunately.

Yes, I am in the States. What you say makes sense. For some reason the surgeon's P.A. wants to follow-up again in two weeks (2nd follow-up after surgery) to check healing of incision with all drains out. I insisted that be via telemed. Then I saw a note the surgeon (who hopefully is well enough to return from recent medical leave) will see me in three months which I will agree to in person and then I'll be interested in what she says beyond that. I saw the MO (telemed) prior to surgery and also have an appointment with her later this month which I also insisted be telemed. I already expressed I am not interested in endocrine therapy and chemo is not indicated so we will see what she says.

I have enough medical issues, lots of appointments and costs prior to breast cancer and am self-employed working half-time due to energy constraints so don't need additional appointments, etc. esp. when longer drives are involved. I do not think they consider these "human factors" most of the time either.... Thanks again for your input and experiences!

LivinLife

YAAAAAAYYYYY!!!!! Got the other 2 drains out yesterday via my local wound clinic - thought I'd be able to sleep in bed last night and tried. I was fine stretched out lying on my back though am not a back sleeper. I also realized any adjustments take some arm strength and I'm still on a 5 pound limit for another few weeks so just was a no go. I went back out to the couch where I could sleep on my side with my legs stretched out over the ottoman. It did feel like I had a large wad of dollar bills folded and put under each armpit... lol I could use my legs to adjust as needed - wasn't possible when in bed. Still felt soooo much better than how I was sleeping before.

Much more comfortable today. I still have quite a bit of swelling under my arms and it just occurred to me yesterday to start icing those areas which indeed helps. I was concerned it was fat tissue gathering since the surgery though the wound clinic nurse said it is swelling.

Now I'm just trying to make the switched from hearing a tornado is coming, to the tornado hitting, doing the clean-up, resuming normal (current stage) while not worrying about whether there will be a next cancer storm. there will be other health storms - I have too many health issues and getting older for that not to be true. I see the oncologist mid-next week and the breast surgeon in about 2 1/2 months. I will update at some point next week. I soooo appreciate this site for information and support!!!

JanetM

I was just diagnosed last week after a stereotactic biopsy. I have an appointment for a bilateral MRI on Wednesday morning and an appointment with my surgeon on Friday afternoon. This isn’t my 1st rodeo, I had LCIS along the ALH and ADH 9 years ago. And last year I had 2 surgeries to remove a rare stomach tumor. I feel like I can’t catch a break

LivinLife

So sorry to hear this JanetM!!! I understand the "can't catch a break...." If you haven't already I hope you start your own thread on here. That way as you're going through aspects of your process people can provide information, support, feedback, etc. I hope you will be a regular on breastcancer.org... this is such a wonderful site. You may have been with your first diagnosis?

LivinLife

I am about 2 1/2 months post-BMX. I began physical therapy at the 6 week mark to help with cording/related range of motion. I should mention I have a history of ulcers on my feet, fingers and hand due to autoimmune issues. I had a negative wound vac placed over the BMX incision after surgery for a week that resulted in a thin well closed scar much sooner than would have been the case otherwise. My surgeon is very skilled too.

The P.T.'s did not want to work on the adhesions or cording manually at all though they gave me some exercises to do at home that has nearly broken up all the cording. I still have tightness in my armpit and pec area though improved. I had been struggling with a bad tennis elbow since 2 months before surgery and that is what they've focused. They were concerned about my healing in the chest incision area. I asked yesterday and I'm nearing discharge! I guess they're still not comfortable working on my scar area. I still have thick areas, esp. attached to ribs on one side, the iron bra or duct tape feeling while improved from the stretching they had me do at home, swelling under my armpit, etc.

First I wonder-when will I be healed and how will I know? My scar is great! Thin, sealed, no sign of infection etc. Neither my PCP nor P.T. folks have examined the scar though the local wound clinic did when I went to get the last two drains out weeks ago. My surgeon has been on medical leave since a few days after my surgery and until at least the New Year. I did not do well with her P.A.so won't return there-also a 4 hour drive. I see the M.O. in March...also 4 hours away. I do see my OBGYN in a few weeks though I think he will be too nervous to say I'm healed or not.

I likely should not have done this though I looked up lymphatic massage on YouTube and found some very simple techniques that actually have made a big difference in armpit fluid/swelling the last several days. I also just looked up myofascial massage last night and did some of these maneuvers which were also helpful. I have looked up local certified lymphodema therapists of which there are few though there is one place. I likely will contact them in the near future once I'm discharged from current P.T. for my elbow. The current folks were great for what they helped with though I'm not at my baseline even though my range of motion is good now. ROM seemed to be the standard they were using for the cording discharge criteria too - along with concerns about healing.

My main question is ' How does one know if tissues, etc. underneath are healed and one can proceed with myofascial release? I guess I will ask that question to my P.T. too though I'm not sure that is there thing either so.....