Crying, scared, blind-sided 50 year old.
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LOL Beaverntx, good to know, thanks.
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Hi guys, It's been months since I've updated here. I know I'm not in the proper section but I figured responding to my one and only post might be a good way of reaching some of my original respondents. Forgive me if I tend to drift off in random directions or otherwise make no sense. I've just completed 6 months of chemotherapy and my mind is not what it use to be. So much needs to be told of what I've experienced but I will save that for a little later. My surgery is coming up on May 2 and I need to make a decision. I have TNBC and my original tumor was estimated at 6 cm via MRI imaging. It's down to the wire and I need to make a decision on double mastectomy vs lumpectomy. I've already been told I will require radiation. I will share more info later, including everything I've been experiencing and my current status. Having trouble thinking straight right now but would like some input. Thanks in advance.
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ritac97, I had a left side mastectomy in 2007, on to chemo after, as was the protocol then.
In hindsight I would have chosen a double mastectomy, as I now have mets in my right breast. Unfortunately none of us know what will happen in the future. When making a decision I try and wiegh up if I dont / do something what would I regret most. It's hard thinking straight in the fog of chemo brain, I hope you can find the answer that suits you most.
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Rita sending you my best as you make these difficult decisions. I am sorry you are having to face this but you can get through it one step at a time. Hope you had fantastic response to the chemo and that there is very little to remove.
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Rita,
Any implant that is radiated will get capuslar contracture meaning that scar tissue will form around the implant. It does not hurt but it does make the breast misshapen. In the scheme of things, it is a small price to pay. I had a lumpectomy with radiation that had an implant already for cosmetic reasons and scar tissue formed. 10 years later, after I got cancer on the other side, I opted for a double hoping for some symmetry. I had new implants after that and they looked decent at first, but the capuslar contracture returned in the radiated breast. I have no feeling in my foobs, and I missed that at first. Now, I don't even think about it. Life goes on and things can always be worse. I'll take what I got. Sending you my best. Trust your gut.
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hello sweetie I hope this Inspires you My story. I was 42 working in medical field was planning Our 2nd marriages when I found my lump in shower wasnt there day before. Went to work it my clinic where I worked my colleagues did a needle biopsy then had biopsy had hospital looking at my friends expression I already know. Bout days later I get phone call I had cancer. Was healthy where did come from. Had my cry then with faith decided to fight by saying cancer you will Not take my life. With my fiance now husband family friends thus yr a 28 yr Survivor also 28 yr wedding Anniversary Praise God..Positive thoughts Hope got me thru. Hang in there sweetie. msphil idc stage2 0/3 nodes 3mo chemo before n after Lmast got married bald and all then 7 wks rads and 5yrs on tamoxifen against recurrence.
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denny10 Sorry it's taken me this long to respond. Yahoo has been dropping these in my spam folder. Thank you for sharing your story. I have STILL not made a decision even though my surgery is scheduled for May 2. It seems whenever I decide on a procedure, I talk to someone and they sway me the other direction. I was set on double mastectomy when I was first diagnosed but when it turned out I was negative for the breast cancer gene, I started drifting to just getting a lumpectomy. My surgeon seems to be leaning that way even though they aren't allowed to put us in particular directions. But when I spoke to her last, she would use wording like recurrence is 4-5% with a double mastectomy and "only" 9% with a lumpectomy w/radiation and basically saying it's not a significant difference. But then I had an appointment with my oncologist's nurse and she was saying how people she knew with triple negative breast cancer opted for double mastectomies for "peace of mind". And then there's the whole thing about radiation and the problem it causes with implants. I have another appt with the surgeon on April 26 so I'll have to make a decision soon.
rah2464 Thank you for your kind post. Yes, apparently my tumor responded well to the chemo. I've heard most triple negative breast cancer does respond well so I don't know how significant that is. I did recently find out what my initial staging was. I was so scared when I first learned my diagnosis that I asked my oncologist to not tell me. She really wanted to but I didnt think I could handle it. I knew it had to be bad because the tumor was 6 cm, I had lymph nodes that tested negative under biopsy but which were visibly affected, and the cancer wasn't detected until I actually had breast pain and then it took another 1-2 months before I could even get chemo. But it turns out my initial stage was 2b. I think what they find during surgery holds more significance though.
moneeme It seems the two options i have are to get the double mastectomy and then the cosmetic surgeon will rebuild using saline implants after radiation is completed. Or I can get the lumpectomy and they will do a breast reduction and possibly not need implants at all because my breasts are HUGE and they can just make them uniform by reducing the size. I prefer a lumpectomy simply because it is less invasive but then reading about cancer coming back has me wanting to just get them both removed so I dont have to worry anymore. It's such a big decision and my mind doesn't seem to be able to think clear enough to make it.
msphil Thank you for your inspiring story. 28 years is amazing, for marriages and cancer survival lol. I am less afraid now than I was at the beginning. The whole thing has been good for me in a way. My faith was strengthened greatly and I think saved my life. It seemed all the news was bad at the beginning. It was cancer, it was a very large tumor, it was triple negative, caught late due to size of tumor, etc. But since I've learned that the lymph nodes tested negative under biopsy, the tumor was mobile, it responded very well to chemo and shrunk from 6 cm to not being detectable through ultrasound and "significantly reduced" but no size given after MRI. Also tested negative for the breast cancer gene. And found out I was only stage 2b. Chemo is over but I still have 6 months of immunotherapy. I need to find out if Im suppose to get immunotherapy before my surgery as I thought surgery needed to be 4-6 weeks after final chemo but I am scheduled for it on April 21 (tomorrow).
I had some HORRIBLE side effects during these months of chemo. With Taxol I lost my hair, chronic fatigue, occasional but mild nausea, some mild nerve damage in feet, scalp acne. But the AC seemed harsher. More hair loss (eye brows, lashes, etc all gone), sleeping a lot, worse nausea (even vomited up water), fatigue, nerve damage in feet still, nose bleeds, interior mouth sores, rashes, *warning, this next part is gross* but I had occasional diarrhea so bad I had accidents (at home thankfully), etc. All that would last 1 1/2 to 2 weeks of the 3 week period between sessions. So I'm happy it's done. Just have Keytruda every 3 weeks now. Not sure what the side effects of that are.
Hope you all are doing well. I've been sequestering myself from family/friends during this time. Just seemed easier not having to talk about it 24/7. I would just put out a mass email/text every so often. But I really need to make a decision on this surgery. I wish I could think more clearly.
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My word, Rita, you've really been through it! I'm sorry chemo was so rough on you. You have some tough decisions ahead. Thank you for taking the time to update us.
Love and hugs,
Carol
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Hi ritac97:
I am sorry you are here with us; take comfort in the knowledge that ALL of us make the best possible choice out of choices we never wanted in the first place. So do not beat yourself up.
I didn't get to read all of the comments on your thread, but something to think about is if you get a lumpectomy and need radiation. I was offered that option, with the comment about the risk of recurrence being "only slightly" higher than the risk from a mastectomy. My cancer was in my left breast. I had a mild heart condition(chronic pericardial effusion, where the lining of my heart tends to hold fluid, resulting in some shortness of breath when I am experiencing an effusion). Your heart is on your left side. When I asked, "what precautions are taken to protect my heart from radiation?", I was told, “oh, we give you breathing techniques to hold a big breath when the rads hit so your breast is as far from your heart as possible”. I asked: wow, so what if, for example, I have a coughing fit in the middle of a treatment. How does that affect the amount of radiation that my heart receives?” I got kind of a dumbfounded look, like, wow, know one ever asked that question and we don’t really know. So in the end, I chose a mastectomy for that reason, to protect my heart. Radiation has other risks as well, and for me, I chose no reconstruction and the healing from the surgery was honestly very easy for me. Again, this was my choice because of my particular circumstances. I wish you all the best as you decide your path forward and remember, be confident that you have made the right choice for you based on the information you had at the time.0 -
Dear Rita,
I am glad to hear you finished your treatment and it wiped off the cancer for you. That is great news. I don't log into here as much as I used to, after they made changes, it kind of hurt my eyes but today I tried and your news made my day.
My tumour is HER2+ (and hormone negative) and was also relatively big (over 4-5cm) when I was diagnosed. My oncologist is a professor in the area and always stressed "We will do the surgery according to the tumour before chemo, not after." He also explained me, neo-adjuvant chemo recurrence statistics look worse than adjuvant chemo recurrence statistics, just because with the former too little is taken out during surgery and sometimes some cells are missed.
Before my surgery I visited 4 doctors, each one of them were head of another big hospital and university hospital, some of them I had to pay myself for the sanity of mind and all 4 gave me the same recommendation: mastectomy and lymph node dissection. I had my tumour on the left side so I had one sided mastectomy. I had my surgery at the beginning of February and around beginning of April I found a really good prothesis and some chic prothesis bras. Right now during the day I don't even remember I miss one breast. Down the line I might think about reconstruction but right now I am doing just fine.
Hope you select the best surgery for your diagnosis. You might think about asking for second opinion from another doctor, that might help you making decisions.
Hugs
Sarah
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sunshine99: Thanks Carol and sorry for the delayed reply. The past month has been very busy with my treatment. But I'd like to update everyone today once I finish these replies.
cake8icing: Hi, I too have concerns about radiation but was told that, due to the size of my tumor, that I would be given radiation regardless of whether I opted for a lumpectomy or mastectomy. I don't like the thought of exposing healthy tissue to radiation but my tumor was 6cm and triple negative and I didn't discover it until I actually felt pain in my breast so I believe the doctors are assuming that TNBC cells were throughout my body and so they have been aggressive in their treatment. I don't know what this radiation means for my future risk of cancer but how do you decline it when it's recommended? With TNBC, all it takes is one cell to evade chemo and surgery and it will grow back and spread. So I'm just doing as the doctors suggest and hoping that it will turn out okay in the end.
sarah_78:: Your oncologist is correct that with most breast cancers, yours includes, surgery is performed before chemo. And I also have ready that getting chemo before surgery increases the threat of recurrence. However, triple negative breast cancers are treated differently than standard ones due to their aggressive nature and fast growing/spreading qualities. TNBC tumors are known to respond well to chemo and I was told by more than one doctor that they perform chemo first because they have to assume the dangerous cancer cells are already spreading throughout my body and to delay chemo to after surgery would put me at higher risk, due to the time needed to heal afterwards. So it sounds like it's standard practice to use neo-adjuvant chemo for TNBC patients.
UPDATE:
Okay so I'd like to update everyone on what has happened over the past month. I completed all 6 months of chemo. The final session was March 31. I continue to be treated every 3 weeks with Keytruda which is a immunotherapy drug. That treatment lasts an entire year so I have 4-5 left on it. Side effects aren't so bad and mostly the only lingering chemo side effects I am still experiencing is some nerve damage in one finger and my feet and my memory is still poor but I'm hoping all will eventually improve.
On May 2, I had my surgery. I can't tell you how many times I changed my mind regarding whether to get the lumpectomy or mastectomy. It seems every time I talked to a new person, they persuaded me to do the other. I was told by my surgeon that both were options for me because my tumor seemed to have responded well to chemo and had not been detected on current MRIs and ultrasounds. And with my negative result of the breast cancer gene, it also left the option open to me. Plus I was told that regardless of whether I got the lumpectomy or mastectomy, I would receive radiation therapy.
But ultimately I needed to make a decision and opted for the lumpectomy. Even on the day of surgery I questioned the decision but the surgeon was convinced that the difference in risk was minimal. I also read online that the risk of death was actually the same for both and it was only recurrence rate that was slightly higher for lumpectomy. I believe the surgeon said recurrence rates were 9% for lumpectomies and 5-9% for mastectomies. There were also many complications that would arise from getting implants after radiation and so ultimately I just made the decision with the help of my doctor and husband. I really wasn't in a position to make any decisions on my own because my mind was so clouded.
Anyway, on May 2 I had the surgery. It was a long day that started early. I had a team of doctors working and had the lumpectomy and lymph node removal first and then the breast reduction and reconstruction after. But I got through it and everything healed great and looks great. No infection and the pain wasn't too bad. Worst spot for pain is where my lymph nodes were removed but even that is mostly gone now. The big news came about a week ago when I got the results of the biopsies that were performed on tissue removed during surgery. According to that, I have had a pathologic complete response to chemo. This is the best case scenario. It means that no cancer was detected anywhere in the tissue they removed...not in the skin, not in the lymph nodes, not in the breast tissue, etc. So my prognosis is looking good at this point.
It's pretty remarkable considering my original tumor was 6 cm in size. They removed 3 lymph nodes and now I'm just waiting for radiation to begin in June. I haven't met with my radiation doctor yet so I don't know the scheduling but from what I'm told, it will most likely be 5 days a week, 10 minute sessions, for 6 weeks. That is a lot of radiation but I'm not one to argue with a treatment which is designed to save my life.
Learning that they did not detect cancer in me during surgery was a big boost to my spirits. I have hesitated to be optimistic all this time because I read so many scary stories about TNBC. But I think my faith and having so many people praying for me was a big factor in my outcome because really my situation was not a good one to be facing....overweight, large tumor, TNBC, late diagnosis (pain in breast as discovery method) and delay in treatment due to overwhelmed medical staff due to pandemic repercussions. I appreciate everyone on this board. It really got me through some dark days at the beginning there. I wish the best for all of you and hopefully someday they will find a cure for this dreadful disease. Take care and God bless.
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rita, thank you for taking the time to update us. You've certainly been through it, but I'm glad to hear the results of your treatment so far.
I wish you all the very best for you.
(((hugs)))
Carol
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Rita, I just want to say that I am so glad to hear about the positive progress you've made. I'm also real glad that you keep coming back and letting us know how you are doing. I think you have such a better handle on all of this now than when you first posted. Here's to continued positive progress!
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Dear Rita,
I am so happy to read this. Big hugs for the good spirit!
Hope you will sail through the radiation and get done with it mostly.
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Rita - thank you for coming back to update us and happy to hear you had a complete response to chemo. Best wishes for continued good healing. Keeping you in my thoughts as youhave radiation therapy.
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Rita,
Thanks for the update. It is great to hear that the new protocol for TNBC is working. I have heard how hard the new protocol is, but there have been many that have achieved PCR with the new protocol. I think your story will really help others who have been recently diagnosed.
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Rita, so good to hear! Glad you checked in.
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