January 2019 Surgery Support Group
Comments
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jaboo, there is actually an article on this site. Go to search and look for “Mastectomy: What to Expect”. This is pretty good info.
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Hi January Group
I am from the December surgery group. I was thinking tonight that if I had to do it over again I would have met with my Oncologist first. Some of you might have done this already, but for me, I met with the BS and PS and then had then had an appointment with the Onc a week after my surgery. The onc then sent out my tumor to be Oncotype tested to see if I needed chemo. I had to wait close to a month after surgery for my test results and I was in agony waiting, wondering about my treatment plan, and going back to work, etc. II would have met with the onc prior to surgery so the tumor would have been sent out immediately for testing. Hoping you all have smooth surgeries as well as recoveries, and sending you hugs and well wishes
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Hi HPFULL, We all make the best choices we can at the time, under a great deal of stress and with minimal medical knowledge. If it helps you to not second guess your decision.....I asked.....
---to meet with the MO before surgery and was told until the full pathology was back the MO wouldn't have enough information, from the biopsy alone, to create a useful treatment plan.
---to have the OncotypeDX test done immediately after lumpectomy but the BS said it's best to see the initial stage & grade when the pathology comes back to see if that would be the most accurate test for recurrence risk.
---for referral to an MO so I could have an appointment set up for immediately after the path results came back but my BS chooses who she refers to based on individual pathology.
So even if you had considered seeing the MO first, all of this is a process. Waiting is the worst! I had my lumpectomy on 1/8, just a few days ago, and am now waiting 2 weeks for the full pathology. I about made myself crazy between biopsy and consult w/ BS, so am actively trying to stay positive and just imagine the best possible outcome as reality. It is a huge struggle as my mind is really good at worst case scenarios, especially at 3 am. Hoping your Oncotype shows/ showed good news and you have a plan that leads to full recovery. Whatever the path, smooth or bumpy, that is the goal. Sending love, luck and prayers to all.
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I agree you shouldn’t look back and question your decisions, the what if’s can be detrimental on your ability to stay focused and continue moving forward through the maze of tests, treatments, procedures etc. that we have to deal with on a day by day basis.
BUT, I do think the medical profession could be doing a better job of informing patients upfront on the who, what, where, when and why of the process. For instance, based on my diagnosis (triple positive) going to the Onc first thing was the right move (started chemo immediately with neoadjunct therapy which shrinks the tumors and in some cases you end up with a clean path report), it was only pure chance it happened that way. No one told me what order to go to doctors, I just happened to come across an article that said your Onc oversees all treatment aspects and felt that is who I would see first.
Some medical groups do have advocate teams that meet with you first and discuss your illness and the process but not very many and I’m not sure if insurance companies will pay for the service.
Hugs to all, stay strong.
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my case was discussed at a tumor board, with MO, radiologist, BS and I think somebody else, 4 people. They recommend what to do first - send the patient either to the BS or to the MO depending on what should come first (surgery or chemo)
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jaboo, that is great and what should happen. Hopefully more places are doing this.
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Anyone start having cold feet about a surgery plan? I decided on unilateral mastectomy no reconstruction, thinking it might be 'safer' in terms of recurrence (less extra skin/possible breast tissue) and quicker on recovery, but as the surgery date draws near, I feel like I should have considered reconstruction (DTI, or TE>DTI) more carefully, even if it has some unknowns and might need a longer recovery/process. Arg.
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Mactaz, that's the way in my country, every case has to go through tumor board. Our system is sometimes very stiff, but this one feature is very good, I guess
alto, yes, me... Surgery in about a week and I caught myself thinking that should I catch the cough my husband is having right now I could delay the surgery and maybe change the plan... in the opposite direction than you - I am thinking a bit about going flat, just one surgety and be done and able to go skiing in February and be well sooner... well, idk. not really wanting to change... It's the fear of surgery creeping in maybe...
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Hello everyone, I am going to be part of this group. I am done with my chemo and have my BMX with Diep scheduled on 18th. Not thinking too much about it as it scares me. But hoping everything goes fine.
Being part of group helped a lot during chemo and I'm thankful to have this group. No one can understand it better than those going through same. I am yet to go through all pages, but hoping quick healing for those who already had surgery and best wishes for rest of us who are going to have it soon.
Peace and strength to all.
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alto,
If your surgery has not yet happened, Id ask your surgeon about your changed thinking. Seems like you have time to modify, if you have doubts!
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Thanks, I left my surgeon a message. I feel partly nutty, but some things need to be said - even if I decide to move forward with the original plan.
JaBoo, so glad to hear I’m not alone, and that those on both sides of recon/no-recon have this feeling. Similar to what you said, a friend of mine suggested this last-minute crisis is a distraction from worrying about the surgery.
Welcome, Being Positive.
I think your strategy and screenname are just right!0 -
Hello Everyone, I'm just popping in to tell you about my experience. I had my double mastectomy Jan. 10 and I'm home today. I truly believe in the power of prayer. I am pain free, no nausea, no arm restrictions other than the 10 lb. limit and my drains are already slowing down a lot. I am so glad that I decided to do no reconstruction.. The surgeon could not find any lymph nodes that lit up and because I had 19 nodes removed last time and now have lymphedema, he did not take any. Which means I may need chemo. Yet to be determined when I go back to the oncologist. This super woman is doing great and you can, too.
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clzink, you are a rockstar!! I am so glad you have no pain!
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Alto, I have the same feeling, not about the reconstruction though. I decided to do BMX because I don’t want to worry about the other one in the future , now I am thinking should I save the good breast .... my surgery is 1/15, I don’t think I will call Dr to change the plan , but I know I will question myself several times a day
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I just had surgery on January 2. Port placement for chemo and targeted therapy, sentinel node biopsy, BMX and reconstruction. I am doing well. Drains came out yesterday (8th day post-surgery). I caught a cold which has made me cough a lot. That’s been slowinf my recovery. Iwanted to share a few purchases that were very helpful. I bought a surgical bra that has hooks for the drain tubes. Also Velcro straps and front. It is terrific. When wearing other bras, I had a special pouch that tied around my waist. It came with a second pouch that was made from netting so that I could shower with it. My surgeons used water proof dressing so I could shower right away. The pouch was much easier than a lanyard. I also have special pillows designed for post MX for under my arms. One thing I’ve found challenging is opening pill bottles that have child safety caps. I was surprised about that.
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Europa, I agree the numbness feels so bizarre. It’s hard to get used to. I don’t feel any tugging from the expanders. I have a lot of pain in my armpits though and my surgeon says that’s normal.
My pathology report came back in two days. I’m surprised some of you have to wait so long.
One thing I learned from my sister-in-law (who’s a nurse)is to try to stay ahead of the pain. Especially the first week. Expanders are very painful. Don’t try to be brave and undermedicate.
I get my first saline injection post-surgery next week (2 weeks post-op). Also, the surgeon injected quite a bit during the surgery so I had shape immediately. So I was glad I ordered larger surgery bras then my standard size.
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BeingPositive, welcome to the group.
Alto, I too continue to wonder about my plan, unilateral versus bilateral or even lumpectomy but always come back to UMX with reconstruction is best choice for me. My head just keeps spinning all these different scenarios, I know I need to quit obsessing but it is hard.
Cerzink, I,m glad you are doing well after surgery. I assume you are waiting for your path results so wish the results are great. My PS also said he wants me up and moving ASAP and only restrictions will be lifting.
It will be a busy surgery week next week so I am sending all good vibes to Hongh, Parchjen, Alto and BeingPositive.
It sounds like those with surgery completed are doing well. Has anybody heard from HazelHappy?
Im getting prepared, my PS said don't go out and buy the surgery camisoles or bras. He said they are expensive - he said I will get a bra after surgery which I can use for several days and then just get a front closing sports bra. His assistant said Walmart and Target have a good selection. I will go back weekly for saline injections and will take about 8 weeks before the implant would be put in place. At the same time he will do any needed reduction and lift to my remaining breast. He also said he will be assisting in the mastectomy so will be in the surgery room the entire time. I was comforted to know I will have two surgeons versus one....
Stay strong, we are all here for each other.
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I had my pre op appointment with my BS this past Thursday and my husband came along. This magnitude of the operation is just starting to hit him now. He was questioning everything which was stressful for me even though I know it came from a good place. My BS was very patient and explained it all. He is now at peace that this surgery is necessary and that I will be fine.
Met with the BS nurse to sign papers. I am scheduled for sentinel node injection on the day before surgery because BS wants to take 1-2 nodes from each side, truly precautionary. She stated that only 5-10% of patients experience lymphedema, and then only if more nodes were taken- is that true?
Pre op with my PS coming up on Tuesday, eager to learn more about the recovery after my TUG reconstruction. BS thinks the pain and restrictions will come from the thighs were the grafts will be taken.... I am in contact with a fellow sisters whose TUG was in November which is very helpful.
Sending hugs and best wishes to the sisters whose surgeries are coming up this week! And gentle healing hugs to the sisters who are already on the recovery side.
xoxo
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Hi Mamihen, what I have seen is 5% to 17% of patients receiving SLNB will contract lymphedema.
I went and got a second opinion because I'm very nervous about getting lymphedema and my BS said she would remove all sentinel nodes and if any showed signs of cancer all auxiliary nodes. The 2nd BS told me that for me no more than 3 nodes would be necessary for a couple of reasons; I had neoadjunct therapy and chemo prior to surgery with what appears to be good results and none of my prior images showed any disease in the nodes. That being said, I also read an article that said based on their review of data no more than four sentinel nodes should be excised.
He also said if gross disease was found in any of the sentinel nodes, he recommended extraction of all auxiliary. I have decided to forgo any auxiliary node extraction if they find positive nodes and decide later how I will proceed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32689... Here is the address for the article.
Also, my husband is driving me crazy with all his questions - he is asking about issues I’m quite comfortable with and just need to move on. I know he cares and understand this is probably as difficult for him as me, but it does add a lot of stress to me and I don’t need any more added to my shoulders (becoming a bent over little old lady due to the weight😛).
Not sure this is helpful. Take care.
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hi all, is it normal to feel tired 5 days after lumpectomy with SNB? Pain is minimal but I just feel so wiped
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Yes. Your body is putting a lot of energy into healing. I felt a little better a week after my first surgery and started trying to do my normal routine - but it felt like I had about 80% of my normal strength/energy, and had to go back to taking it more easy and just do the essentials. I'd say it really takes about two weeks before you have your normal level of energy back.
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Hi All,
I had my surgery (double mastectomy, port placement, and SNB) at 8:00am on Jan. 9 and my surgeon was willing to let me go home that evening. I opted to stay until the next morning. I had almost no pain. I received one dose of pain medication (morphine) right after I got to my room, which made me nauseous so they gave me Zofran. I needed more Zofran 6 hours later but after that, nothing at all. My BS said 2 lymph nodes lit up and 2 more came with them so 4 were taken total. None of them showed signs of cancer so no ALN taken.
The only lasting thing that bothers me is the drain on my right (non-cancer) side. For whatever reason, it is so irritated and every move I make, it pulls. Ironically it really isn't even needed. It has never even been emptied, not even in the hospital. If this one drain didn't irritate me, I would feel fantastic. Tired easily, but fantastic.
My tumor was at 6 o'clock and the BS chose to make the incision a diagonal/vertical incision on that side so that she could take all the skin around the tumor. The incision on my right side is horizontal. So that is unexpected but absolutely no problem.
I showered the next day. I can lift my arms and wash and style my hair. I just get tired more quickly.
My incision is covered up with a medical glue. I woke up with an ace bandage around my chest which is nice to kind of secure things. I also have an elastic band around my chest that the drains velcro to. I'm just wearing a soft sweatshirt over that.
I am a side sleeper so that limitation was difficult. I gradually was able to sleep on my side last night (3rd night post-surgery).
Sorry if this is too much information but I really wanted to know details so maybe this will help someone.
I am wishing positive, calm, healing thoughts to all of you. With love.
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Hazelhappy I’m so glad you are doing so well and the nodes were negative. I truly appreciate all the info, as I’m sure you know the closer you get to your date the bigger the anxiety is, at least for me.
Take care and stay strong,
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Mactaz: you will do just as well as you have all this way, which is very well! You will ring this bell too!
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Thanks SB, you are always there to support me.
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Thanks for sharing, Hazelhappy. It’s great to hear you are doing well
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Thank you Hazelhappy and everybody sharing details. Very encouraging to read not much pain, able to lift arms, etc. Wishing upon a star ... :-)
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Thank you Hazelhappy！It’s very encouraging and I am so glad that you are doing well.
Thanks for everyone who shares here, my surgery is coming in 2 days and extremely nervous.
I will go to the hospital in the morning and get injection, PS need to do some marking. The surgery will start 2pm, and should last 4.5-5 hours.
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Hi just popped in to see if I can offer any insight. Had my surgery in November. BMX with Diep reconstruction. If anyone wants more information feel free to PM me or I can share more here.
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Thank you Hazelhappy! That positive news is really helpful and hopeful. Glad that it worked so well for you. I truly wish all of us share such great outcome after our surgery.
Alto, even I keep going back and forth about my BMX decision. But the driving force behind it is my high oncotype and I am trying my best to avoid going through this in future. So ultimately I come to same conclusion always.
All the best who have surgery this week (including me 🙂)
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