August 2017 Surgery Group
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hi katjaNL, I'm sorry you have to go through this. I hope you get all good news tomorrow. Wrswinnie, I hope you have good news to share as well. I found the waiting to be so difficult and stressful. The unknown was so hard to handle. Sometimes I would have to talk myself through it and remind myself that..."in a few days this part will be behind me"...or..."I can do this, after tomorrow I will have an idea where to focus and what the next step will be". Baby steps...I had to take things in small doses best I could, because all of this IS overwhelming. This group, along with other forums on this site have been so helpful in getting me thru the tough parts by sharing stories or giving encouragement or providing helpful advice between fellow community members.
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Hello all
I am seeing my BS tomorrow but I am scheduled to go back to surgery next Thursday to remove the rest of my lymph nodes. Apparently the pathologist at the hospital dropped the ball(long story). I have a PET scan Tuesday. I will start chemo in October. Radiation will follow after my 16 week treatment schedule of chemo every two weeks. I am just worried that my reconstruction on the right breast will be affected. I see both surgeons tomorrow so will know more then.
This has been a crazy journey I still can't believe I am on.
Thanks again guys
Lisa
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My heart literally hurts for all of us; especially after reading your results Lisa. I am so sorry.
I had my surgery on Aug. 25th and still waiting for pathology results and still have the drain tube. Ugghhhh!! I am praying/begging/pleading that everything comes back clear!
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WellWishes, Hoping your results come back all clear also.
Guess I'm lucky, I had my surgery on a Tuesday and by the following Monday I was in my surgeons office with final results. (except since initially they thought I had IDC, on pathology it was ILC so nodes needed an additional special stain to check for metastasis. Apparently finding metastasis in nodes is not the same in IDC as ILC. Sneaky ILC. She called with those results within the next two days.
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I received initial pathology over the phone-lymph was clear. The grade of cancer went up from my initial biopsy, but I am still Stage 1. The second area that appeared as a "shadow" when I had my seed locator put in the day before surgery was benign. I won't get the full report until I go in, but I was very grateful for the news. The office told me I will be looking at radiation and hormone therapy, but that will be discussed in more detail at my appointments in two weeks.
I know I am going to have to make lifestyle changes so I will be physically/mentally healthier and stronger--I wish there was a magic wand so I just knew what to do. My well-meaning friends are giving me advice: "gluten is evil", "wheat/sugar/dairy/_____ is evil", "do you use evil chemical household cleaners/laundry detergents/cosmetics/?!", etc.... My head is spinning. I thought I might start with asking my well-meaning friends to save their advice for a few weeks and letting myself take some time to recover physically and emotionally before I jump into huge changes. I am just so tired. Anyone else have some well-meaning friends? Anyone else want to borrow some of mine...LOL?
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Hi ruth. I certainly have a few of the well-meaning friends. My sister has been the one who has frustrated me the most during this though. IE: I have barely seen her, she doesn't call to check up (I have to call her), she hasn't really helped me at all... but she talks to all of her friends about it like "we are going through this together!"
Hi beach... mine was diagnosed as ILC from the biopsy; which might be why my pathology results are taking (what seems like) extra time. *It is a sneaky bugger and they have to look more carefully for it because it is harder to see, from what I understand.
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About dietary changes, I recently read a book called "Anticancer" and it nearly had me scared of eating anything at all by the end of it. I decided to run some of its key points past the nutritionist at my cancer center, whom I respect, and go by her advice. It has helped simplify my thinking. For example, all processed meats should be avoided. But my nutritionist says to read labels and if I can find brats made without nitrates, ONCE IN AWHILE I can allow myself one. With my ER+ status, I should avoid soy, too. She said, "If you use protein powders to up your protein intake, just make sure you get the kind made from whey, not soy."
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((((well-meaning friends are giving me advice: "gluten is evil", "wheat/sugar/dairy/_____ is evil", "do you use evil chemical household cleaners/laundry detergents/cosmetics/?!", etc.... My head is spinning)))
Well i call bull wacky on all that crapola... My mother had early breast cancer she was 48. She grew up on farm. Her own meat and vegis they canned all their own garden. She never smoked. Never drank...Rarely ate out.. And walked everyday... Your better off relaxing enjoying food walking or your favorite excersize. Too all the food fantics... Dont be blaming cancer on diets.. Oh so venting here lol i hate when people are so omg its what you eat just change it... Grr. I lived very differnt then my mother lol i smoked and drink and try and get vegis on the table and now i have BC too... I beleive food in moderation is all good... I dont think we have to go all nutso on special diets... Please don't miss understand im not saying eating out of box lunchs everyday is ok.. But i sure dont beleive all this stay away from sugar and gluten (unless required by gastro issues) yep that hit sore spot with me... Lol nezt time someone suggests the perfect diet to me ill be asking to see their cupboards... Sorry for the vent lol
On other news im tired of being in pain. My chest still very painful im ok around the house but a car ride requires painkillers. And to touch my chest is like nothing i can explain. Parts are dead to the touch other parts is electrical shocks. And just painful to the touch. Where the drains were still can't touch there. Just way to sore. I have cording down the back of my right arm. Fluid build up as well in right pit... Coughing and sneezing is fine... But yawning knocked me off my feet what the heck lol. Oh and cant drink cold drinks... How strange is that. If one more person asks how are you with that omg so sorry look on there face im gonna loose it. Not to mention im tired of saying in fine... Grrr.
Honest im good but felt good to rant.. Lots of shit going on and tired of reassuring everyone else but myself... Hugs to all.
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Thank you, beach2beach and Mrs. Winnie! Can totally relate to the situation when you know the results are available but you have to wait for appointment. Got my results yesterday - think I have enough information to add Dx to my profile now. I had one good and one bad news - lymph node is clean and that's the great great great relief! But the operation was not successful - margins of the excision have not been negative, which means either additional lumpectomy or mastectomy is required. I'm seeing my plastic surgeon on Monday. I'm doing my research now on pros and cones of both.... Mastectomy won't be followed by radiation or chemo in my case, only Tamoxifen. But lumpectomy, which is still my preference, will be followed by radiation + Tamoxifen.
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Updated my Dx based on the new info...
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sorry to hear katja. Sending you warm thoughts and vibes. Let us know.
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Can someone re-direct me to the thread where I can read about lumpectomy vs mastectomy?
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top of page menu. All topics. Surgery then ots in that list
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Katja,
found this one https://community.breastcancer.org/forum/68/topics...
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some tmi for ya... Got surprised by my cycle... Why because I use to get very painful breasts before and i always knew it was coming with my grumpy days... Seems my last rant was PMS. Bright side soo nice not to suffer painful boobs around my cycle... Killing time till my rrsults 3 hours and counting
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I loved your rant MrsWinnie and I don't think I could agree with you more.
Ohhh, how I can relate to the electrical shocks felt every single time my shirt brushes over my chest. I now feel every step that I take when I walk... in my chest; which is weird. I can't stand up straight comfortably yet and if I lift my right arm (non-cancer side) too high... it feels like my boob is going to burst open. *PS did a lift and reduction on the right side so I am cut underneath, up the center, and around the nip on that one. The left side looks like someone punched my boob in. lol... I think my left side is more sensitive to touch whereas the right side hurts from the stitches/cut.
They finally called me Friday with my results... all margins clear, lymph nodes 0/1. and sounded very positive. I have an appointment scheduled with the PS and Onc next week sometime so I guess I will find out what comes next at that appointment.
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Grats wellwishes my surgeon suggested compression for my chest... Ended up getting a tenser bandage (used for sprain wrists) feels way better. But one sore spot under it..
My results... Idc and dcis high grade. ER+ PR+ HER2- Tumer was 1.6 cm. Margins clean 6 nodes all clean.
Next step I see medical oncologist for preventative options. Phew... Praying 4 all you.
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My drains came out today! I feel so free
!! Pretty glad to have that part of the show behind me so I can start getting back to normal activities0 -
big grats enjoy your shower lol.
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Hi LisaBS - I'm kinda in the same situation as you. I have to have a Pet Scan, and Tumor Board is pushing Radiation (even though I have a skin disorder) and Chemo and HER2+/ Iv Infusions.
My question is why didn't they have me take a Pet Scan before Surgery?
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Hi Everyone, I guess this wraps up "August 2017 Surgery Group" and onto "Chemo in September Group" (or Radiation?)
I had my remaining Left Drain removed today. (It didn't hurt coming out - I didn't feel a thing) YEAH! The protruding tube was so painful I couldn't do my PT on that side. I hope I can recover and no perm damage.
Best of luck to all and for those who will unfortunately be joining Sept 2017 Surgery Group - this is a wealth of information and thanks to everyone for sharing their journey.
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Hello all
I jus got my treatment plan. I have another surgery Thursday to take my lymph nodes they were positive in my PET scan and to get my port. October 3 I start chemo. Adriamycin and cytoxan every two weeks four times then taxol 4 treatments every two weeks. Then 33 radiation treatments. So i have 6 crazy months ahead of me.
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MrsWinnie, good luck with the rest of the appts. Did surgeon think you could skip chemo?
WellWishes, good news!
I know some are going to Chemo and/or Rads and some just to Hormonal therapy but I plan to bump this thread periodically to hopefully keep us all connected to see how everyone is doing. Since we all may be posting in different forums and not see what has been going on with each other, maybe we can post on here once in a while to keep in touch with the August Surgery group.
LisaBs, Sorry for the additional surgery but you will get through this I'm sure.
Btw, anyone's boobs/skin itchy while the nerves are regenerating or is it just me?
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I agree, beach2beach, I would love for everyone to pop in and let us know how we are all doing. As for itching, I don't have any of that happening, but I'm a couple weeks after you. If it is nerve regeneration, I would think that it's a good thing? I had itching when bandages were on from skin irritation, but nothing now that they are off.
MrsWinnie had to laugh at your tmi because I don't think much can be tmi here when we've discussed everything from fluids to constipation! Glad your nodes and margins were clean
WellWishes, glad you had clean margins and nodes too!
LisaBS, I will be thinking of you on Thursday and as you move forward in your treatment. It does sound overwhelming that it will last 6 months - try to take it one day at a time...that is what you can control best. Hugs.
Question for everyone - I asked in another forum, but topics get buried pretty quickly sometimes. Did anyone get a second opinion on your pathology? If so, how did you go about doing it? I'm thinking of doing it for peace of mind that I'm moving forward in the correct manner. Thanks for any input
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Agree on checking in back in this group. My surgeries have not finished yet, awaiting the date for the second lumpectomy to achieve clear margins... I thought of getting the second opinion on the after surgery treatment, would be interesting to read about this!
As there still remains the possibility for mastectomy for me in the future (if margins come back non-clear again), I was wondering on how long does this surgery take?
You are very brave all, much strength and good luck with treatment to all!
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in ER right now not feeling well dizzy and light headed... My surgical site leaking yellow shit... Bleck. Wait and see.
As for moving on be great to stay in touch.
Beach my surgeon was unsure... Im in the gray area. What ever i do now is preventative messures. Inhibitor pills guaranteed. Wait and see about chemo waiting for appointment with MO.
In Canada Katja we have a team that go over our pathology and treatment plan. We could ask for more opinions but dont hear of it often.
As too itchy and phantom pain.. My right nipple hurts... Dosnt stop till i grab my bare chest and think.. Its gone..then it stops. Laughed out loud and cried first time it happened... It happened at the dinner table. Family all had good laugh
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Lsunshine- So sorry to hear your first night was so rough!
MrsWinnie- So, no chemo? That's great news!
LisaBS- I'm so sorry about your bad news! I hope your PET scan comes back clear. As I said to MrsWinnie, chemo is very doable and the side effects are well managed. And I love my port! It makes the infusions so much easier. Big hug!
KatjaNL- Glad you found us! Sorry you're in this situation though. That's a tough decision. Do you have young children? How is your support system?
Ruthfromberkshires- Glad to hear your positive news! Take that time you need to recover! One step at a time. If you are wanting to make some changes going forward, I second reading the book Anticancer by Dr. Servan-Schreiber. It's a good read and presents a lot of research on positive dietary changes to make as well as other things to do. As Alice mentioned though, it can be a bit overwhelming, and the book was written before nitrate free processed meats were readily available, for example, so some of the recommendations aren't really up to date. I was also a little annoyed by how much emphasis the book places on our lifestyle being at fault for cancer. I know it plays a role, but I've always been a healthy eater and very active, so I'm sorry, but my BRCA1 gene mutation is responsible. Period. That said, I think reasonable dietary changes can be beneficial to overall health. I've added green tea and turmeric tea to my regular diet, I try to choose foods high in antioxidants, and I limit sugar as I've read enough about the role of blood sugar spikes and insulin in feeding cancer to see that as an important change to make. Everything in moderation ;-)
WellWishes- Great news!
Rljessu- So sorry you're looking at chemo and rads! The Her2+ targeted therapies are amazing though! It's my understanding that PETs are really only done if they're pretty sure the cancer has spread to your lymph nodes. In my case, they knew without a doubt my nodes were positive (biopsy) when I was first diagnosed, so I had one done early on. Some major cancer centers don't really use PETs at all though (MD Anderson) and instead do locally focused MRI and CT scans if they're concerned about metastasis.
Cyclegal- I've gotten second opinions at MD Anderson on EVERYTHING! There, they automatically request the tissue samples to test themselves. I'm not sure how it works elsewhere though.
Beach2beach- I'll help you keep it bumped :-)
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MrsWinnie- Just saw you're update! I hope everything is ok
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Well, I've had some cording! Bleh! If any of you feel like a taught rope/cord is running through your underarm, get it checked out. I've had one PT session and the massage snapped the largest cord. It's much better, but still work to be done. Fortunately it's not affecting my range of motion. Radiation was pushed back due to Hurricane Harvey, so I start tomorrow afternoon. I'll keep checking in periodically to see how you all are doing!
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Hello August friends,
MrsWinnie, I hope all is well for you at the ER. My thoughts are with you.
MommyErin, I have cording too! It freaks me out to look at it! I've been going to PT twice a week and doing the exercises at home. I found a YouTube video from a nurse in London that gives a routine to stimulate the lymph system and prevent lymphedema.
Cyclegal, I've gotten 2nd opinions twice. The first time I called my gynecologist's office and the nurse practioner recommended three hospitals in my area that are breast care centers. The second time when the pathologist diagnosed Pleomorphic LCIS, I went for a 2nd opinion because I wanted another pathologist to look at the slides.
KatjaNL, I've read that mastectomy surgery takes between 1 to 3 hours without reconstruction. I asked at my pre-op appointment and found out my surgeon had booked the OR for 2 hours.
Continued healing wishes to everyone
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