I have been troubled with just overthinking my Onc plan for my path going forward. I trust that she is making decisions with my best interest in mine, I google a lot and sometimes that can be a nightmare. To explain, I was slated to have my mastectomy on my left breast where the tumor is located. Just before my surgery, the breast surgeon ordered a bone scan and it was then found that the cancer had metastasized. Immediately surgery was placed on hold. Further test were done to now bring me to my current treatment plan, fluvestrant and Ibrance. My concern is that since the surgery was called off the tumor is still there. Does anyone else have a similar case as mine? I guess my worry is, would the tumor make matters worse as opposed to having it removed. I expressed my concerns to my Onc, she stated that the tumor is not a mother-ship, it doesn't cause more cancer cells to grow. She stated that if it was causing me much anxiety then to let her know and the option to have it removed we could then look at pursuing.
Please share your thoughts and similar experiences. I don;t want to have unnecessary surgery out of fear when there are bigger fish to fry with controlling the metastatic diagnosis.
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geewisdom
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I was diagnosed with ILC in May 2018 and MBC to bones and liver in June 2018. I am HR+ and Her2- and have been on Femara, Ibrance and Xgeva since June 2018. Had my ovaries removed July 2018.
I was going to get bilateral mastectomies before we realized I had MBC. They don't feel that the traumatic surgery is warrented since with MBC you cannot be sure that the cancer cells that are circulating throughout your body and deeply imbedded in the bones will ever be eliminated completley.
So, the strategy is different. It is about systemically managing the cancer cells.
My last PET scan showed no more liver tumors, a minimally active liver shadow, the primary tumor in the breast is much smaller and is not very active (as seen by how much the tumor lights up on the scan) and the once widespread bone mets throughout my skeleton are now in only a handfull of "hot spots" in my skeleton.
My second line drug, when the time comes, will be Piquray, because I carry the PIK3-CA mutation.
Education has really been the key for me to feel good and confident about my treatment plan, prognosis and future treatment plans.
Hi klhowe, thanks so much for sharing and just reading through your reply its reconfirmation for me why my surgery was placed on hold and why my Onc suggested we concentrate on controlling the mets for now, This makes me feel so much better.
Hi gee wisdom,
Really great question, and you've answered a question I've also had...
I had a bi-lateral mastectomy when I was first diagnosed, pre-mets, so I'm not in the same situation. But I've had a similar question re: my largest/nastiest tumor in my sacrum....Why don't they radiate that? Isn't it generating cancer cells? I've been advised not to radiate a tumor in that location since it's one of the larger bones and is essential for producing white blood cells -- radiation would reduce its ability to do that. This is apparently especially true as we get older (I'm 57) because the bones in the extremities, etc., no longer produce WBC's or produce many fewer. So the doc did not want to compromise my immune system or ability to tolerate treatment (since WBC's are often so low...).
Anyway, I never got a satisfactory answer re: "generating cancer cells", but you've answered it with the "mothership" metaphor! I still have a hard time fully accepting this...I often picture my cancer like a fungus or mold that needs to be controlled and I would think that spores (?) would be more plentiful with large...fungi?..."tumors" . But they've got the medical degrees and I failed high school chemistry (! ), so I'll take their word for it!
So I think you're wise to just let it be and hopefully it will shrink, which might give you some gratification/sense of progress? The surgery is no fun, that's for sure. And you might need to stop treatment before/after to keep your counts up, so that seems potentially counter-productive?
Lynn another reason to not do radiation now is because too much rads is not good for us. If the cancer gets to the point of not being controlled by the drugs then there’s a chance you may have pain at the site, and that’s when radiation is useful as it helps reduce the pain. That’s why they like to hold off - in case it might be needed at a later time.
It might be helpful for you to visualize your drugs shrinking that tumor.
Hi Lynn, Thanks for sharing and I agree, I'm not pushing the issue any more. I trust my Onc although I do take part in my healthcare decision making. I felt the same way, should I get this tumor mother-ship out of me:-). I feel better now after ready so many of the replies and I don't feel that I am such a unique case. I wasn't looking forward to the mastectomy and in the end it was not an issue anymore. Funny how things work out.
Mine wasn’t diagnosed at all until it was in my bones so no surgery for me either. I was like you and kept thinking that it could spread somewhere else but it already has realistically
Yes Sarcie we were thinking alike. Thanks for sharing.
Hi Gee,
I can understand your concerns because I would also like surgery to remove the primary tumour. Like you, I was going to have surgery (I had the choice between a lumpectomy or a therapeutic mammoplasty) when everyone thought the disease was early stage. But after all the CT and MRI scans, bone scan and PET CT scan I was told the disease was metastatic and that surgery was no longer an option (apart from an oophorectomy if I wanted). My hope is that as the tumour continues to shrink that it will get to the point where I can still have a lumpectomy.
But I know how deflating it can feel when you are geared up for surgery to then be told it is no longer an option. I would rather have the tumour removed and give my immune system a fighting chance.
Same here SophSP, I am hoping that the tumor will shrink and make me a candidate for a lumpectomy if that's possible. My Onc also stated that the meds I am taking should also help the tumor shrink. Let's both hope for the better outcome. Thanks for sharing.
Let's hope we can both get a lumpectomy! When I had my ultrasound on Monday right before my biopsy (for genomic testing) I was looking at the screen so I could see what the tumour now looks like and it was really hard to see. When I had my first ultrasound nearly two years ago the tumour was clearly visible. It showed up as a black oval shaped mass on the screen but this time there was no shape to it at all and it looked more like a small, faint shadow. I was expecting the appearance of the tumour to be about the same as last time, but smaller. However, this was completely different to what I was expecting. I was told that the treatment will be responsible for the positive changes, so that is good news. I hope for the same good results for you too.
I am in the same boat as you, although they found I had seven tumors in my breasts, but only one that could be felt. The cancer is a little different in the right breast too, so I wish they would let me get rid of it. So far everything has responded well to treatment, but I worry that seven breast tumors is a lot to leave in my body, and I feel pain in them sometimes.
I hear you MJ and can relate to how you feel. Let's trust that our meds will work to our advantage. You are right, at times I feel pain from the breast tumor, it's weird its mostly at night after I have showered and removed my bra. Thanks for sharing.
I had a mastectomy with Stage 2 in 2004. As another poster said, it is traumatic surgery. It’s not just a boob job as some people stupidly joke. It removes all of your breast area, nipple and some other tissue. . The recovery is painful and you will require PT which doesn’t always restore full range of motion in your arm on the affected side. Having a drain inside you for at least a week is painful too. There is little point in removing your breast now that you unfortunately have MBC. Please don’t put yourself through that exhausting, difficult procedure and instead follow your doctors guidance. It’s very important with MBC to maintain quality of life. Having unproductive, harsh surgery which doesn’t affect metastasis defeats that goal. I’m sorry you’re in this situation. I just want you to avoid unnecessary painful surgery and post surgical issues. Good luck.
Thanks MarthaV, you are so right why do people think that have a mastectomy and reconstruction surgery is such a wonderful thing. I think more favor is leaned toward getting a new set of breast. There's a price to that, I mean literally and that's aside from the pain and recovery time. Thanks for sharing.
I'm so glad you asked this question because this afternoon I am going to see the surgeon again to have a mastectomy scheduled. I also was diagnosed denovo in April of 2017 and it was too late for the surgery. But I also have a fungating wound and they are concerned that it will continue to grow and get infected. So they are advising surgery to get it removed now. I agree with what most people have said on here, it is not a good idea to get major surgery unless you absolutely need it. I also have heard from other people that the surgery is really not that bad. But I think part of it depends on whether or not you have reconstruction which in my case I am not. But even with all the parameters, given a choice I would not have mine removed. I think I will be relieved to a certain extent once it is done because sometimes it feels like it is pushing on the tissue and it is irritated, not really much pain but lately it's been feeling more heavy and like I would like it out. I wish you the best with your decision
With that unpleasant wound, you are in a very different boat than “just” having a lump. I am sorry you have this problem. I understand and respect your decision to have a mastectomy to see if that will relieve this particular issue. I’m not sure the reconstruction alters the pain and post surgical issues based on my own personal experience FYI. But you are going into this eyes wide open and for good and unfortunately unique reasons. You will be surprised when you see how long the drain tube is when they remove it. And you will feel relief when it’s out for sure. It hurts for it to be removed. It will help you understand why it’s so darn uncomfortable post surgery. I joked getting that darn tube removed must be like the extreme relief old ladies felt when they removed their corsets.
It’s important to follow up with PT afterward to improve your range of motion. I go to a local indoor pool and do the backstroke which always loosens up the scar tissue. Good luck my sister warrior. Please keep us posted.
Thank you Martha, I saw a physical therapist yesterday free surgery and she says I have a little lymphedema already but not much and in fact I don't even notice it. So she wants me to start doing some exercises and she has already ordered me a sleeve. But I am not getting reconstruction, this will just be straight mastectomy. Yes, I am a little nervous about it. That is a good suggestion about going to the pool. I used to love to swim, haven't really done it in years and certainly not since I got cancer. I have some asthma-like symptoms since the cancer but they are intermittent. I guess I could start slow and see how that goes. Thank you for your words of advice and confidence, it looks like this is going to happen early March.
I trust your PT is a lymphatic specialist? That needs to be looked after to keep it in check and make sure it doesn’t progress. Good that she noted you have it. Btw swimming is great for Lymphedema as the massaging by the water helps the lymph fluid flow. There’s also a great resource online for your own education of how to avoid doing things that could make it worse
Thanks Wolverine, totally agree with you on the surgery note, only if its absolutely necessary. I wish you favorable healing and everyone's healing process is different so continue to think positively. Keep us advised on how your doing pre and post surgery.
My primary tumor (left breast) never formed a lump- but was confirmed through mammogram and biopsy. I was also diagnosed MBC denovo. After starting treatment (tamoxifen, then letrozole), somewhere during the 2-3 years post diagnosis, I developed an actual lump in the breast. Then the lump went away, and to this day, I do not have any lump/cancer in my breast- only in the other sites where the cancer has metastasized.
Though this may not be comforting, consider the perspective that because it is metastatic, it can 'move around.' And the 'goal' in treating metastatic disease is through systemic therapy.
I know these decisions are hard. Hopefully, you will be able to make the right choice for you.
I agree with many here. It’s already MBC so the treatment is systemic. There’s a good chance the tumor will shrink with treatment anyway!
Some find comfort psychologically to think about cutting the cancer out but it’s not so simple with mbc. And keep in mind there is always risk with surgery, so my advice is don’t do it unless it needs to be done. I’ve known people who have suffered terribly with post-surg infection, on-going pain, lymphedema, tightness, etc. We need good quality of life and surgery can have too many negative effects on that.
I was scheduled to have my other breast off (high risk) as I had taken letrozole already for so long. I freaked out and cancelled the surgery last minute as it was my doctor’s call, not my desire. Within a few months I was diagnosed MBC and clearly had already had it (with hindsight) when I was supposed to be having my mastectomy. I am still SO glad I had not had that surgery for nothing!
Perhaps look into a type of meditation that will help you have positive visualization of that breast lump shrinking , and help alleviate your anxiety. Hugs.
Thanks 13plus, your words are so encouraging. With each read I feel even more positive and I am glad that my surgery was placed on hold. I don't blame you, we have to do what's in the best interest for each of us including, gut feel, doc's recommendation, etc. In the end, the decision is ours.
So sorry to read your awful news. I do agree with your oncologist. Removing the breast will, in effect, remove the opportunity to check your response to your meds.
My MBC was diagnosed when I felt a lump in my armpit; the cancer had already spread to my spine. I immediately wanted to have the lump removed from my armpit but ended up agreeing not to when my surgeon advised against it. As a result, I was able to feel the lump as it reduced in size and eventually disappeared.
It will be an unnecessary surgery unless you simply feel a psychological need to remove the tumor from your body. That is a legitimate source of anxiety and it will be up to you to weigh the pros and cons.
You are in my heart and prayers. There is no wrong decision.
Thanks Linda, I can physically feel my lump and I do regular checks to see if shrinkage is occurring. Understandably I have to give the meds time to work. I feel good now about the surgery being placed on hold. I'm ok with the tumor being there because I did not want the surgery option. I just didn't know if there were similar cases like mine. From the outpouring of the replies I am so grateful and thankful that I found you ladies.
May or good Lord continue to watch over each of us.
Hi geewisdom: Not sure info of my experience will help you, however here it is. I have stage 4 bc moved to my hip 9yrs. ago. Hasn't moved since. The breast tumour decided to cause problems. I got some pain and the tumour started growing and pressing on my skin. I ended up with an open wound that continued to grow. So I had a mastectomy on Jan 3rd. I am now just recovering. The entire left breast was removed but she did not touch the lymph nodes which are small and not advancing. That would have been more invasive and taken longer to recover. I was so happy to here that the surgery could be done. Living with an ugly smelly wound was not an option for me.
I must say I have an excellent surgeon. I have had minimal to no pain even with a large scar and many staples. I am just at day 4. The drain caused me no discomfort or problems. It will likely come out in the next day or two. I am advised to take extra pain meds for that day but not a big problem. The staples aren't bothering me much either.
Surgeries are easier these days with better anaesthetic and better surgery procedures. I am so happy I could have the surgery.
I was taken off Ibrance before the surgery as it lowered my immune system but remained on the Faslodex. My point here is not to worry about surgery if that is what is recommended. I am looking forward to getting the staples out and then it will be hoping the remaining cancer stays quiet for a few more years. I am 79 yrs. old.
One final thought, don't google everything. Just Mayo, John Hopkins and this site. Like you said you can drive yourself crazy reading everything. We already have enough to worry about! Wishing you all the best,
Hi June, I am so proud of you, by this time your surgery is behind you and you are on the path of healing. Thanks so much for sharing, I am wishing you a rewarding recovery and let's kick the cancer in the booty and tell it to STAY AWAY. Your right, I just can't read anymore publications from websites and I'll stick with this site for sure and the others you named. You are blessed and my hero in disguise as I want to live as long as the good Lord blesses me, you are a trooper at 79. Keep TRUCKIN!
Hi: Yes, had the surgery Jan. 3rd. Everything went amazing well. I had a surgeon trained in bc surgery and rebuilding all in one surgery. I didn't opt for the rebuilding because it didn't matter to me. Everyone is different but I have had virtually no discomfort and no problem with mobility or numbness in my arm even with 42 staples in. She did take the whole breast plus 4-6 lymph nodes under the arm. I just took my regular pain meds. I can't believe how well it went. I think they are using such better surgery methods now then used to be but certainly my surgeon was very skilled. Only post op instructions were to drink lots of water, (1 to 1.5 l per day) limit sugar and salt in my diet, which I did. Virtually problem free. She said she got all of the disease that was there. Of course I still have my hip tumour which is inoperable which affects my mobility somewhat but it is pretty stable. Not much progression as yet, since 2011.
Just to mention, in my case it was necessary to remove that breast because of the open wound created by the tumour. I didn't want to live with that.
All the best to you in your journey and thanks so much for thinking of me.
I have bilateral mastectomy bc I was early stage of cancer. I did have cancer only in one breast. I regret the decision since you will have pain for the rest of your life and numbness. 6 months later the cancer came back at the same place and then 1 year later spread to my spine (onc fault bc she didn't listen to me when I told her about the lump). Anyway, the surgery didnt help as they told me and the cancer came back really quick. If I can do again I will have only lumpectomy and try to cure myself with meds/radiation, change my diet and supplements instead of drastic surgery. I have alot scar tissue that cause alot pain
Sorry to hear you’ve had those issues from your surgery. Have you tried lots of stretching to see if it helps with the pain? (I’m guessing it’s from the scar tissue)
Hi NMartinez, I am so sorry to hear about your experience and you've made an impact on me with your story. Thank you so very much for sharing and I will take heed in my decision making. In the meantime I'm sending WELL wishes your way and hope that the worse is now behind you.
You are so welcome. It's hard decision but sometimes we get so scare that we dont think the consequences of drastic surgery like bilateral mastectomy. My aunt did only lumpectomy and she has been cancer free for decades but she changed her diet, alot natural supplements after she finished w chemo.
I wish the best and I hope God guide you in your decision. Send you the best wishes too.
Almost the same as my story. I still have my breast with the tumor after they had discovered I was stage iv with mets to the lungs. Once it spreads to the other organs, I was told there is no need to get it removed bc it is still inside my body and can spread from there anyway. I was also on Ibrance and falsodex, although I am now off Ibrance and on Verzenio.
Also numerous women who have had their breasts removed years ago now have been diagnosed with stage iv. So even though they went through chemo, radiation and breast removal, years later cancer was found in their bones, liver, etc. and are now stage iv. So no breasts does not mean no breast cancer.
First stop googling. I would personally would not go through any needless surgery. Removing the breast is not going to remove the cancer that is in your bones so what would be the point.
So here I am almost two years later still with my breast and I can feel the tumor. It has not grown or shrunk. Controlling the cancer inside the body is more important at this time.
I forgot to mention that I regularly take one Oxycodone in the morning and a Lyrica at night. This is for pain management of my hip. The tumour there has caused a few problems with my moblility. I walk with the use of a cane and sometimes a walker. I have not increased these meds after the surgery. They keep me comfortable.
I have the same situation and had been planning for a mastectomy when they found the bone mets. What a roller coaster ride that was! As you can see on this board you are not alone and there is so much comfort in that. I keep the googling to a minimum with only links found here and from selected sources as mentioned above. Most importantly don't believe the statistics as there are many on here who have long left those behind.
I'm glad you asked this question as many of the responses here confirm what I was told almost 16 years ago (March, 2004, my month from hell), that once bc has metastasized, a mastectomy is not recommended. When I read your question, I wondered if that is still the best thinking about treatment for this lousy advanced bc! I did have a lumpectomy and that was not terrible to recover from. I have bone mets only and I had some bone tissue removed for biopsy to assure that the mets were the same type as the primary cancer in my breast. I have done incredibly well on hormonal (really anti- hormonal) treatment also with meds that strengthen the bones and help the metty places heal. I'm now 73 and the biggest health issues I have on a day to day basis are a badly damaged sciatic nerve and eczema, neither cancer related. Isn't that silly and amazing! I used to have just two doctors, a primary care doctor and a gynecologist. Now I have enough doctors to form a baseball team! You have some things going for you cancer wise! The meds you are going to be on suggest that the cancer is Estrogen receptor positive, and with the meds for bone mets that are available now, we rarely die from just bone mets! So you have those things going for you. You are obviously online looking for info. Learning all I could about mbc helped me calm myself down early on with this cancer. I read alot and went to an annual bc retreat sponsored by the cancer center where I am treated. That was the first time I met others with mbc and that was helpful and I learned alot from them. It helped me decide that I really needed to retire (at 58) and go on Social Security Disability. I figured that self care needed to be number one and that I had no wiggle room about taking care of my health. One thing that has been difficult for me, and I suspect many women, is learning to ask for help! Even for little things. I'm an oldest child and like to think of myself as independent, though thankfully have a husband who is always here for me. The one thing I do suggest to those recently diagnosed is to get a second opinion from an onc who treats only breast cancer. The top cancer centers in the US are those designated "Comprehensive Cancer Centers." They have to meet very high standards and they have very specialized oncs who see patients and do research. On the homepage of this group, there is a list on the right side of the page and you can find a link to Comprehensive Cancer Centers there under "resources." If you aren't already seeing an onc who treats only bc, seeing one will likely be reassuring to you. It's worth traveling a bit to get to one. My own local onc helped me get an appt and I was seen at the closest CCC in about 3 weeks after she referred me there. When the bc onc there examined my breasts, it felt different than any other breast exam I have ever had, like she'd done it so many times, she'd developed radar in her fingers. And one of the things she told me was that when a newly diagnosed woman with E + mbc responds well to initial treatment, she probably will respond well for a long time, years not months! And I sure have! I hope you will too!
What a WORD PJBinMI, love ready your story, touched home with me. Your so inspirational and thanks for the reference to the list on the landing page. I'm praying for ALL of us and we must continue our faith. Your right, my BC is ER+, I as you considered retiring I am 55 now and don't intend to work pass 60, I'd rather spend the time enjoying life and taking care of myself. MBC has given me a new outlook on life, what's truly important in life!
I had a left mastectomy in 2000 when I was first diagnosed. The cancer returned in 2017 in the little bit of tissue left after the mastectomy. It had spread to my right lung. The mastectomy didn't help me. Apparently, it came back in the tissue at the chest wall and then a lymph node went to right breast and down to right lung . It is tough to make decisions. I wish you the best. Blessings, Hannah
My experience is alittle different. I had a 5.2 tumor in my left breast was on a clinical trial for 6 months and then had my tumor removed. Before the removal they thought I had cancer in my bones. I questioned their findings because it was exactly where I had my pins put into my knee from having a knee transplant. It was exactly same spot and my knee surgeon confirmed not cancer though my oncologist was sure I had bone cancer. It is now two years later. I should of had a double mastectomy but was told to just do the left breast. I am a BRCA 2. During my treatment recommendations was to do the red devil cocktail which works on aggressive cancer really well. My cancer was slow growing and it didnt make sense so I sought 3 opinions from different facilities. First was red devil, 2nd stated that was to strong and I should be on a much more mild chemo. 3rd stated no chemo but a target therapy would be much more specific with less damage. I went with the last one it made more sense. Finally I had my reconstructive surgery and decided to have a mastectomy on the right breast and was glad I did pathology found that cells were starting to change. My story is to always question everything even when they tell you which they did, that you have weeks to live if you dont take the red devil. Plus remove both breast especially if your a BRCA girl. I always pray that God will guide and protect me throughout my journey and he has. Praying for a miracle for all of us.
I asked my onc about that and he said that they have done studies to see if mascectomies(sp) would help with MBC and the studies showed that they had no effect on survival rates. So with that said, it would be asking a person to go through radical surgery without any benefits. He's at a top ten research hospital. I'm all about the mold analogy, but I have to trust those who know a lot more about this disease than I do. Cancer sucks.
I had a mastectomy 8 years before my MBC was discovered. I have mets to my bones and one lymph node under the arm of my mastectomy side. My oncologist said that was lucky because the lymph node was much easier to biopsy than a bone biopsy because they are much harder to visualize and grab the right tissue. So leaving your breast lesion in is sort of like the canary in the mine! It’s much easier to biopsy and also easier to measure it’s response to treatment. I hope everybody’s responses have helped. Elaine
I believe there are clinical trials investigating whether removal of the initial tumor increases survival Time, or time to progression. I don’t think I would have a mastectomy. I wonder what your doctor would think about radiation to the breast. I understand it surgery can sometimes encourage spread of disease if clear margins are not obtained it first. I am Not a medically trained person that have been dealing with this for quite a while and read quite a lot. I have had a lump ectomy/partial mastectomy to my left breast before recurrence.
Hi Lordmandy. I'll actually run that question by my Onc on my next visit. My contention from the start is that I believed in breast conservation if at ALL possible. Guess the bone mets took care of that for me. I'm still smiling.
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), so I'll take their word for it! 
ILC: Double Mastectomy positive margins complete breast tissue removed
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why do some MBC get mastectomies?
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