Lumpectomy Lounge....let's talk!
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You're welcome. It's hard sometimes to pick up the "slang" we all use. Need a dictionary
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Hi Ladies,
I found this Lumpectomy Lounge a couple of days ago and this is all I have been reading since. I started at the very beginning.
I'm having my lumpectomy with sentinel node biopsy tomorrow morning and growing more and more anxious, especially after I saw some posts about cording, nerve damage, etc. The surgeon didn't tell me about the risks, I didn't ask either. Problem is, I don't think I would have a different choice anyway - I do need to have that lump out of me.
I do tend to "awfulize". I'm not looking forward to the next few days. Or months.
BB
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BB -l. I know exactly how you feel - one is naturally terrified, but take courage - if it goes as well as mine did you will sail through it - II had three sentinel nodes and an axial node removed too which probably made one of the incisions a bit more painful but a couple of painkillers sorted that. I am six weeks on and can honestly say I feel exactly as I did before surgery (haven't had RADS yet) Take it easy and have plenty of rest - move the arm a bit when you can. Don't forget it is always the medical disasters/bad side effects which get most publicity. It's a bit like giving birth - few people say it was great!! All the very best and let us know how you get on.
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BB, as Gemma said, those of us with problems tend to post more looking for answers. I also sailed through my lumpy. Nerves are always screwed up with surgery. Not much of any way to prevent it. My BS said that it could take 2 years for those nerves to come back...or not. And it's the ones from y SLNB. My girl is doing fine. Rads are definitely doable - maybe just getting a bit tired. In fact, it is all very doable - partly because we HAVE to do it and mostly because it really is! HUGS!!!
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BB I didn't have any problems with my lumpectomy either. Like PP said....nerve damage is probably inevitable but heals over time and is really just a nuisance more that anything else. I was back to my regular routine the weekend after my surgery. I was actually fine the next day but was trying to milk it for a little extra me time...come Monday morning I was up and running like usual.
I had internal rads and again it was a inconvenience more that anything else. You'll do great!!!
Keep us posted.
(((hugs)))
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BB, I didn't notice any nerve damage from my surgery. With only the sentinel node removed, most will not have a lot of the bad side effects. It is true, that those who are having issues and need help and support do post more often. It's normal to be anxious about the surgery and we are here for you!
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PoppyK, you were really lucky. My underarm is numb. Only thing that is halfway a problem is that I have to be VERY CAREFUL when I shave since I can't feel. So far I haven't bled all over the shower
And really that's an annoyance rather than a problem.0 -
BB, here is my update....
I have been off pain meds for a couple of weeks now. I frequently feel some tightness in the upper arm and occasionally the baseball under the arm, but nothing like before. It is definitely healing. I don't lift anything too heavy, yet, and there is no sign of lymphodema. The 6cm seroma at the lumpectomy site is shrinking. That had been almost as hurtful as the ALND pain. I couldn't ride in a car or even walk without this waterbed in my boob hurting, forcing me to just sit quietly for hours. Now I am walking the neighborhood working my way to 10,000 steps a day.
This time last month I was kicking myself for signing the consent for an ALND. But, now that I see an improvement, I am not so angry or afraid. I am hopeful for a full recovery, but I could live with this condition now. Maybe I am just getting used to it.
The only benefit to having it done, is I know that I only had one cancerous lymph node and 28 were clear. That is reassuring. Had I not signed the consent, I'm sure I would have wondered forever if I had more lymph node involvement. But, knowing that, did the risks outweigh the benefit?Again, I am 65, and I don't need to worry about time off from employment or lifting young children.
I am not trying to influence anyone. Quite frankly, if I have to do this again, I'm not sure which decision I would make. Who am I kidding! Of course I won't do it! I can never have my cuticles clipped, shave that armpit, no needle stick, no aggressive swimming strokes or weight lifting, no picking up my grandsons, and forever watch for lymphodema.
Just read all you can from reputable sources: here, Harvard Medical Journal, Mayo Clinic, John Hopkins and you will make the right decision for you.
The surgery itself is a breeze, and once that is out of the way and you have your final pathology and oncotype dx score the decisions will be easy. This is all doable. And we will all be here to listen to your experiences and concerns. Gentle hugs.
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SweetHope, I see you are in a clinical trial. Have you started it? Can you share anything about it? Very glad you are improving. We certainly have to make extremely hard decisions without much information at times. Even with all the cons for removing all those nodes, it still has to be reassuring that they found only 1 that was involved. Hopefully peace of mind somewhat evens out the negatives.
HUGS!!!
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Peggy, this trial is using about 4,000 women who have hormone receptive BC, with 1 to 3 positive lymph nodes and Oncotype score of 25 or less. The study is to help patients decide whether to receive chemotherapy or not when they have a lower Recurrence Score.
My oncologist suggested it when I got my score and I was ambivalent about treatment. Now, on Tuesday, a computer will decide for me! If I am chosen for chemo, it will be the standard drugs, nothing experimental. Then the normal treatment of radiation and hormone therapy.
Hopefully, the results of this trial will show a RS level where chemo may not be needed and unnecessary risk is avoided. My score is in the mid range, 18, and while I have a recurrence rate of 12% I would have liked more input on what to do.
I will stay in the study for at least 15 years. Which is easy for me...I am retired and do not plan on moving away from this area.
I'll keep you updated. Becky
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Very interesting. My MO thought my Oncotype of 13 was borderline. I think he leaned towards chemo. My BS said no. So just rads and AI for me. Good luck with whatever course of treatment you will pursue. Take care! HUGS!!
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SweetHope, I was offered the SWOG trial, too. It sounds like a very useful study, which will help so many others down the road.
One of the articles on breastcancer.org is about radiation to axillary nodes instead of AND. I found it an interesting read. Here's the link:http://www.breastcancer.org/research-news/20131107...
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Regarding the ALND - it's too late for some here, unfortunately, but we all need to be aware of a newer approach to ALND that spares as many of the nodes that drain the arm as possible. It's usually referred to as ARM (Axillary Reverse Mapping) or a variant thereof. It was developed by a woman surgeon associated with the University of Arkansas, I believe, and it gaining notice and acceptance around the country. My surgeon uses it and, should I have to have ALND, that's the technique she will use. (Notably, neither of the other 2 surgeons I expressed my concerns about ALND and lymphedema even mentioned the approach to me - because they haven't learned it).
It involves tracing the nodes which drain the arm and then avoiding their removal during ALND, thus minimizing lymphedema, as the arm retains its full (or nearly full) complement of nodes. I suspect that within 5 years this will be standard of care but in the meantime we need to start asking surgeons for this technique rather than accepting what they choose to offer us.
My hope is that I won't need it but if I do, I will certainly provide updates on my experience with it.
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Hopeful, what a marvelous approach. Luckily I wasn't faced with ALND but now that I know, I will tuck it away in the corner of my mind in case someone I know is faced with it. Thanks for bringing it to our attention! HUGS!
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It is gaining information like this that makes me so glad I found this forum. Thanks for such valuable news. I hope all the Newbies are listening.
Hugs to all.
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Does anyone know why a surgeon would choose ANLD over SND? I only had the sentinel node removed....I guess if it had shown cancer they would have removed more. Mine was removed and examined during my Lumpectomy. Those who had several removed does that mean cancer was found in the sentinel first?
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Nash, if then sentinel node tests positive (sometimes if 2 or more do so) the surgeon will do an axillary clearance - ALND, on the theory that if the SN is positive then we need to assess the status of the remaining nodes and remove as many cancerous nodes as possible. The unfortunate aspect is that MANY times just one or two nodes will be positive but the damage is done with the ALND, many time to no real advantage to the patient. Or there could be a situation such as mine when we have known from day one that one node was malignant; that leads surgeons to insist that ALL the level 1 & 2 nodes need to come out. Given that chemo and axillary RT is almost a given in that scenario, there is some question of whether ALND might be unnecessary.
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I am one of those who only had the sentinel node removed. Cancerous cells were detected. My SO did not want to remove or biopsy any other nodes as it would not change my treatment plan (as recommended by the med center's tumor board. He said the knowledge gained would not be worth the risk of lymphedema. The radiation and chemo would take care of any cancer in the other nodes.
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PoppyK, very interesting that your SO felt that way. I hadn't heard of surgeons choosing to not remove more lymph nodes - not that I've heard all that much. Certainly can help with your quality of life. HUGS!
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tomorrow is my lumpectomy
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Shelleym1 - take a deep breath! You'll be fine! We're all in your pocket and you'll feel us hugging you all day long. HUGS!!!!
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Ditto!
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I had my first diagnosis in May, 2013. DCIS non invasive stage 0. Found from my annual MRI which showed "increased blood flow" on right side, grade medium-high (2-3) Lumpectomy and then radiation - never would have shown on mammogram. Onco score 27, with surgery 10 yr rate 14%, and with radiation 7%, ER positive. At the time of placing wires in for surgery with Mamogram on that side I asked that the left side be done as well, sadly they said unnecessary and I completed my treatment of radiation.
My Lab had "flagged" that right site with licks that winter before diagnoses
I had my follow up MRI that December, 2013, everyone thing looked great. That winter my Lab again flagged with licks on the left side. I froze thought I must have spilled something and told her my test showed "'All clear". In March I visited a world Class oncologist here to expand on newest treatment and she cautioned me to have BOTH MRI and Mamogram at same time because the MRI picks up most things but not microcalcifications - that is best from mammograms. That june I had both done, and there were the microcalcifications! Needle biopsy, biopsy and lumpectomy with one node checked (all clear) but though small, 2mm, invasive, And HER-2 positive.
Lumpectomy, radiation, and now on Herceptin for 6-12 months. Tamoxifen as well. Struggled in both cases with having radiation, researched newest techniques and in the end I did it.
Lumpectomy and radiation did not change my routine, which included weight lifting classes 3 times a week, which I think increased blood flow and limited any side effects to tissues as well as kept mental state positive.
The Labrador knew.
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Amazing what dogs can find, isn't it Hailey? Hope all is going well for you now. I know I have microcalcifications in my right (non-BC) breast so I asked my BS if I should have an ultrasound instead of a mammogram - my first since my lumpy. She said that mammograms are great for picking the microcalcifications. If more is needed then it will be done but the mammo is the first line of defense in my case.
Hailey, you might consider making your diagnosis and treatment public on your profile. Then we could all see what you've been diagnosed with and how it was treated. It is often helpful for other people walking your same path.
I see this is your second post. Welcome! We're here to support you, listen to your rants, dry your tears after we let them flow, and just be here. HUGS!
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shelleym1.... I will be thinking of you tomorrow and sending positive thoughts and prayers your way. Things get better from here.
(((hugs)))
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Shelley, I will include you in my prayers. Be sure to update us.
Welcome, Hailey. Everyone is so helpful and supportive.
The American Society for Clinical Oncology makes recommendations for node dissection and biopsy. The guidelines as they apply in my case are: Women with one or two positive sentinel nodes who plan to have lumpectomy plus radiation also don’t need axillary node surgery. Here's a link for info on SNB and ANS from breastcancer.org : http://www.breastcancer.org/treatment/surgery/lymph_node_removal/number_removed
Peggy, I love checking in with you. You have helped me so much through this process!
Those new to the Lumpy Lounge: Peggy is awesome!
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PoppyK, I'm very pleased that I've been able to help you. We both had our lumpies on the same day! We all muddle through this challenging mess as best we can. How are your rads going? Aside from topping off my exhaustion (from other sources) with fatigue, I had no problems from radiation. I've been extremely lucky. HUGS to you!!
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I have been most interested in the information and views concerning sentinel and axillary node removal. What is usually done here in the UK for lumpectomy patients is for sentinel nodes to be routinely sampled and taken straight to the lab at the beginning of surgery for immediate assessment and upon the results, the surgeon continues with the lumpectomy and removes further nodes i.e. axillary clearance if necessary. Hence the need for general anaesthetic as it is all done at one session but it can take a bit of time.
I was told of the possible drastic results of axillary clearance (not by the surgeon but by the pre-op admissions nurse) and refused to consent to this procedure on the grounds that if the cancer had already spread to the sentinel nodes it would have metastasised and further information would not add anything to treatment. I felt the effects upon my quality of life would not be worth it - but I am old. I was aware that many US and other surgeons had ceased to do ALND on the grounds that the possible effects outweighed the utility My surgeon was not very happy with my very forceful views but had to adhere to them which was a good thing as the axial node showed anomalies which were finally decided not to be bc related.
There may be good reasons for different approaches so my experience may not be valid for other people.
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gemma, when I met with my surgeon before my lumpectomy, he explained to me that he would be doing a lumpectomy with a SNB. They would test the nodes then and if they were positive, then he would go ahead and do a ALND. At this point neither the ultrasound nor the MRI showed any lymph involvement. I woke up and they had only done the SNB and removed 4 nodes. Even with only 4 nodes removed, I have developed very mild trunkal lymphodema. You never know how your body is going react.
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BB and Shelley where are you? How did surgery go? Here are some gentle (((hugs))). Please tell us everything went well.
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