Is ignorance bliss?

I wanted to follow up my posts concerning whether early stage patients need to be monitored for distant recurrence -- i.e. mets -- if there are no clinical symptoms of mets. Current guidelines for early stage breast cancer as I understand them say this is not appropriate and the only imaging appropriate is for local recurrence such as mammogram, sonogram, and MRI. If and when early stage patients develop clinical symptoms of mets or blood tests including tumor marker tests indicate a problem, then CT, Pet, and so forth are appropriate to see if Stage IV is the proper staging. To summarize my own case, my first MO ordered a CT and a bone scan after my surgery and mammoprint had been done but before chemo and any other treatment. She did not discuss the reason for this and in fact as I recall it just had her nurse schedule them and let me know. I did not know about the guidelines or what questions to ask. If I had known I would have refused or at least had her persuade me it was in my best interest. The first CT was in August of 2017. It found small spots in the lung and liver that the MO admitted would not cause concern if I were not a bc patient. Had a follow up CT in February of 2018 that found everything to be stable -- I.e. no cause for concern. Yet I had been put on a schedule by that MO calling for another CT this August to get a "final" indication of NED. In the meantime I had learned that this whole line of CTs was not consistent with the guidelines and I had a new MO. Today this new MO agreed that further CTs were not necessary. My conclusion is that I was the recipient of treatment that was unnecessary and potentially damaging to me (you can look up the risk of CTs if you are interested) for little to zero benefit -- the very thing the guidelines are trying to prevent. Hope this experience helps other early stage patients ask the right questions before undergoing CTs. Polly

Ignorance of metastasis & re occrence can be bliss....temporarily. I wish you the best. I have been on this BC journey since 1999, 2 relapses. Sometimes when no symptoms it was ok & peaceful to wait & enjoy NED. When obvious symptoms re occurred I sprang into action & began treatment. Right now I decided, ( with input & ok from my medical oncologist) to have MRI of spine lesion (without contrast) once a year instead of every 6 months. Helps to have some normalcy & fun times without scans. Hugs to all my BC sisters. Cloudy

Hi,

I'm new here and have been reading and taking it all in. I have had breast implants for about 40 yrs now. About at the end of 2015 I had run into my dining chair and it hit me in my left bottom breast so hard and painful, I was on the floor in tears. And this has happened to me about 5/6 times before this but never so hard. Yes, I was running as I normally do when I forget to take my phone with me while cleaning the house. It did hurt terrible for about 3 weeks then went away. I since felt an oblong lump directly in that spot. Still so scared to go and find out what it is since I'm 60 and the statistics say it will be bc. I had a lump on the top of my right breast in my 40's and it was nothing and lasted about 2 yrs or so. I have never had a mammogram in my life. The reason: my mom was a firm believer in prevention and made sure she had all of the tests and mams every year. My grandmother had bc at 93 and died from the flu. My aunt got bc and died 4 yrs later. But to be honest, she found the lump many yrs before and never told her daughters. She went through a nasty divorce and I think she was severely depressed. Back to my mom. All those mammograms and yet no one found her bc for many yrs! She should me what looked like a cyst below her breast. I assumed the doctors she went to monthly and her mammograms would surely let her know if it was bc? Wrong! She showed me the bump again a couple yrs later and it look twice the size and was bleeding and horrible looking. Yet her mams were okay? Long story short, she had stage !V. Had a mastectomy and couldn't do chemo because of her heart condition. Tried radiation but could only stand it a few times. She went on to live to 89 1/2 yrs and died of CHF. She got her diagnosis at age 75 and never looked back. She was a positive person and never gave it a second thought. I have a my lump now for about a yr and it has shrunk and is the size of a marble. It is smushy and moves. I take care of my 95 yr old dad and am afraid I will not be able to. So I have put it off. I am making an appointment today. I don't feel it is anything but the blunt trauma. I could be wrong. I had a life long friend recently pass from lung cancer. Only lived 1 yr. My mother-in-law passed from pancreatic cancer at 82. No meds. She wanted quality and that was only 5 weeks. My youngest daughter's partner's mother just passed from Ovarian cancer. She lasted 2 weeks. I think that has made me not want to go to the doctor. I haven't told anyone in my family and don't want to. Hope all here live onto fulfill their dreams and then some. I think we're making great strides in a lot of cancers and even if it can't be cured, it can be stopped. Kind of like my hubby living with having a widow maker heart attack and dealing with that everyday.

Me too pupmom - 7 years next month.

Diane

Thanks congrats to you too pupmom. I do remember how afraid I was then but I was determined to keep my game face on plus I think I was in a fog most of the time and just didnt give myself permission to think about my diagnosis in terms of life/death.

What a difference 7 years makes and how totally blessed we are.

Diane

If I had any type of scan after mastectomy, I imagine that my 50 lung mets would have been caught when there were many many fewer. I was asymptomatic, no cough...nothing. Tumor markers normal.

Amica, I have to say that I agree. The current method of no scans is based on 2 studies out of Europe that showed it made no difference. Those were small studies. In the 1990s!!!!!!!!!!!!!!!! We base our current care based on 1990s studies. Treatments have improved since then, and no one knows if it would change things. I do not understand why my friend who had stage 2 testicular cancer gets scans from time to time, yet we get nothing. I understand not wanting radiation exposure, but women with mastectomies could get MRIs or ultrasounds to look for local recurrence, and that would put them at no additional risk, and potentially catch things early before they have a chance to spread. I just don't understant. There has to be a better way.....I just don't know what it is.

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Great idea oxygen, only $25 to $50k

https://www.providianmedical.com/ultrasound-machin...

There are pics of lymph nodes and cancer here somewhere. Ultrasounds are so cheap by comparison to other scans. I don’t know what the big deal is in denying us.

Kneee - I don't understand why you are having trouble getting MRI's and ultrasounds. Both of these tests are included in the current guidelines. My breast surgeon and my MO would order them if I asked. (As an aside I do not see how ultrasounds could be used to screen for distant mets but that's another issue.) Its is CTs and PET scans that are not recommended for staging patients that have already been determined as Stage I or Stage II based on path results. Here is the concern I think. Let's say a patient is 50 years old and Stage II. If a CT is ordered after surgery and is clean, then there is no guarantee that undetectable cancer cells are not already in the blood stream. So the patient wants another CT but some mets move fast like lung mets so the patient could not take comfort unless the next CT is 3-6 months. So lets say 6 month intervals which would have to be used for some 20-22 years as we now know that breast cancer commonly comes back as late as that and with some BC is more likely to come back at 20 years than at 5 years. So lets say 20 years of twice yearly CTs -- this would be 40 some CTs and the patient is just 70 if still alive. But the patient would likely be dead from kidney failure from the dyes used if not ill or dead from other cancers caused by the high radiation from these CTs. If cancer is found after years of CTs then any treatment of mets would require CTs to evaluate the treatment so it could be altered if not working. Kidneys may be so damaged that no treatment is possible. That's the problem even if the patient can afford the tests out of pocket. So I remain unconvinced that there is value in screening CTs for mets unless there are clinical signs of mets. The guidelines make sense to me. Polly

Thanks 🙂🌷

I have noticed it getting smaller. And have prayed every night for god to give me the courage to do what I should. Well, the other morning, it seemed like someone had pushed my head right out of my pillow so fast my head was spinning and I thought I was having a stroke! I flew out of bed and went straight to the er. Did all the tests, etc. Even an upper body X-ray. I know you can't tell much from that, but all blood work came back good as well as the X-ray. I did tell them what happened and about my lump. Seems someone was making sure I got what I wanted! I have an appointment for Friday, the 10th.

I am hoping and hoping it is a fat necrosis. I did some more research and it seems that they do show up later when hit very hard. I was twice the size it is now. And it does move all over the place. I know a malignant tumor can do the same and I will do the right thing, I appreciate everyone's comments. It sure does help knowing there is support. ❤️ I will get back when I get my diagnosis.

I think we really have to stand up and insist on these tests. My mom never backed down. And the doctors let her know SHE was wrong and THEY were right! She never listened to any of them. Got her way and if it did return, she would have had a fighting chance.