Chemo over, no scans or MRI - just wait for something to happen?

husker

I am struggling with what should be good news; I am done with 6 rounds of chemo and because I am HER2+ will continue with Herceptin until August. I did not have lymph node involvement but because I am BRCA2 positive a bi-lateral mastectomy was called for and will be followed by a hysterectomy as preventative. I met with the doctor to discuss "survivorship" what happens now. Basically being told that no scans are needed but I need to 'listen to my body' and if something doesn't feel right to report it. This wait and see approach seems kind of odd. If they felt they got all the cancer during surgery am I just supposed to wait until it comes back at a level where I feel it - or my body doesn't feel right? Wouldn't it be better to proactively get scans to make sure something isn't hiding somewhere at an early stage where I don't feel it yet but it is more treatable? I am told I have a very good prognosis for a complete cure - maybe I just don't want to accept it. I don't want to wake up one day and learn it has returned but that it now is progressed.

loriekg

Hi Husker! I also am HER2+ and will have my last Herceptin next Friday. I had a BMX (which I wanted anyway, but finding out I had the CHEK2 gene only solidified my decision.) You were told the same thing I was. And Kayb explained it just like my MO did. I get that if it comes back, it's Stage IV….but wouldn't it STILL be better to find something sooner than later? It is hard to understand why it wouldn't matter? My MO said she would order any scan I wanted if I had any unexplained symptoms.

Spookiesmom

I'm 3 years out. My MO and PCP do full blood labs on me, including tumor markers. I still have my port too.

I've had one really bad scare, my PCP didn't waste any time getting me out for MRI. Turned out to be everything but ca.

It is frustrating, but that seems to be the way it is. It can make you crazy, don't let it.

TripleP

I am right there with ya on these recommendations. I want to know my tumor marker numbers but my onc doesn't tell me. I would like an annual scan! My tumors did not respond that well to chemo. If something comes back, I would like to find it early. Unfortunately, I am now in the position of analyzing and fretting over every twitch

ElaineTherese

I get more attention than you ladies because I opted for a lumpectomy. So far, I've had two clean mammos. But, I also had a PET scan and an MRI after chemo and rads because of "something" that had appeared on two previous PETs. I may get annual MRIs, but that's just because MO is a scanner and I was Stage IIIA. I'm OK with less attention; I have a busy life, and would rather not spend it, sitting in waiting rooms.

sandilee

husker- Listen to your gut. You feel uncomfortable just waiting until you have some kind of symptoms. So DON'T! After a year or two, request a CT scan, or bone scan, to check for anything that might be brewing.

I was diagnosed Stage 1 in 2007, had a right mastectomy, was put on aromatase inhibitors and just examined every six months but no scans ordered. That is protocol, and that is unacceptable. My cancer moved to my bones, most likely within two years, but it was not caught until 2011 when I had a fractured vertebra. Then they found mets in my spine, my bone marrow, my ribs and my skull. Had they found it earlier, I would have avoided a lot of pain, would not have had to deal with a fractured vertebra that caused numbness from the chest down and the possibility of permanent nerve damage .I went for a month not knowing if I would ever really walk again, couldn't drive for fear of breaking my spine, and was generally really miserable. I had no symptoms ( I was working with a personal trainer and felt really well) until I had severe rib pain about two weeks before I woke up numb and unable to walk without assistance. Fortunately, I had radiation and medications, and I have my mobility back, but I will always be beating back the beast.

I think that the "no scan until symptoms" protocol is to save money. Don't let what happened to me happen to you. Ask for a scan, at least a bone scan by two years out. If you have to make up some kind of back pain in order to get one, do it. I truly believe that catching progression sooner has a better outcome, even if only quality of life, for cancer patients. I think your instincts are right on.

ruthbru

Although it is tempting to think that anyone with cancer should have be checked thoroughly, tests are really not needed for every situation and many, like scans, expose patients to unneeded radiation. Blood work, particularly tumor markers are not accurate for many people and if markers are up, just lead one back to scans. With present technology, if micro-cells floating around, they are not going to show up anyway. They would have to reach a certain mass before they would be able to be detected. At Stage II, you do have a great prognosis and should now start to plan what fun and interesting things you want to do with the rest of your life! That being said, of course, if you have some strange symptoms that don't go away after several weeks, certainly you do need to go in and get them checked out.

dtad

sandilee....Completely agree with you. I think its absurd that we are not screened for recurrence. I also don't believe the outcome would be the same. The most likely place for the cancer to spread is the lymph nodes. Why aren't they checked on a regular basis? That too much radiation theory is crazy. Maybe right now there is no way to be screened but there should be! Just another example of how far we still need to go in this horrible disease. Im so sorry you have to deal with a recurrence. Good luck to you and please keep us posted....

sandilee

A common place for ER+ cancer to spread first is to the bones. ( I still have no cancer in my lymph nodes.) An MRI does not expose the patient to radiation and is an excellent tool for picking up bone mets. Expensive, yes, but also very effective. I most likely had bone mets within a year or two of my original diagnosis, as they were widespread by the time they were found, 3 1/2 years later. No symptoms--- in fact I felt better than ever because I had been working out and taking a bunch of supplements--- until the big one that required intervention. To wait until you have pain that doesn't leave for two weeks, like the protocol states, is often too late. Past medical thought is that when you find mets, sooner or later, doesn't really alter the outcome. I don't believe it. I went through a lot of pain and suffering that could have been prevented had I known that my spine was so compromised. I am very lucky that the collapsed vertebra didn't permanently damage my spinal cord and paralyze me from the chest down. It was very close to happening.

I don't think following up every couple of years with a scan will affect one's ability to enjoy or get on with life after diagnosis. I think it may provide the peace of mind that allows a patient to live more confidently.

dtad- looks like your diagnosis was fairly recent, so you will be able to get scanned two years out- but you may have to fight for it. Good luck to you, too!

sandilee

The good news is that in the future there will likely be ways to know if one has progressed through blood tests.

There is at least one company that is working on creating that now. I donated part of my original tumor and five months of blood work (through my one's office) toward that effort, as he was involved in the promising trial. Doctors would love to be able to nip it in the bud if it recurs, and the thinking seems to be changing regarding the benefit of finding mets earlier rather than later.

maryna8

Husker, I feel your pain. I am 2 1/3 years out from diagnosis and seem to have become a bothersome hypochondriac. I have had many tests, some at my request and some at the doc's request. I do not like being this way, but don't want to be complacent either. To me this is one of the worst side effects of cancer, this constant worry over aches and pains. I have Triple Negative BC, so the hormone blocking pill is not an option for me.

I wish for you and all of us health and peace of mind!

Mary

TallnTerrific

I am in the exact place as all of you on this thread. I finished all radiation treatments and was given anastrozole and told to go live my life and quit worrying about by my MO. Well that was not good enough. My cancer was not detected by mamograms. I found an indentation that did not seem as though it had been there before and I argued with doctors to get the diagnostic mammo. Once they did surgery both breasts were taken. Nonetheless I have residual tissue under my arms and pectoral muscles that abutted the cancerous left breast. Since there were three large tumors and numerous uncounted DCIS tumors in that breast as well as movement of the cancer into 1/1 lymph nodes, I have not been comfortable that all is gone. My breast surgeon finally gave me the info I needed--if it shows up on the muscle it is right on top under the skin and will be hard like a rock instead of like a soft lump. Then she said if the cancer metastasized through the lymph system then it would be stage 4 and would have to be controlled with chemo thereafter. I am trying to get my head around the best approach wig this. The AIs cause so much joint and back discomfort that it is hard to tell if it should be reported. I think AIs are also responsible for unusual fatigue too. Finally I also noticed chronic tingling in my left arm and soreness in my wrist. I am not sure if that is also related to the AIs or something different.

The point is what rises to the level of reporting it to the Docs? Maybe none of this is unique. But it certainly is very frustrating. Wouldn't you think onco doctors would be trained to explain all of this to people? It is the most disappointing part of the treatment.

ruthbru

Tingling could be from surgery, radiation, nerves growing back (if you start getting little 'zaps' that is definitely from nerves growing back & can go on for years). Fatigue can be from the AI and/or a because you are worn down by the whole experience. When you are in 'active treatment' you are in fight mode the whole time, and when you are, BOOM, done 'go out and live your life'......it is like a rug is pulled out from under you and it takes time to adjust psychologically as you have a chance to ponder, "What the hell just happened here?".....all while dealing with the lack of hormones if you are taking an anti-hormonal. It took my body about 6 months to adjust to Arimidex and then I was really okay. I found the best way to deal with the achiness was to keep moving. Exercise helped me more than anything else.

Hopeful82014

Kayb - No need to do it now but if you see any further articles along those lines would you mind posting them, when you have time? Merci!

Hopeful82014

Thanks so much, Kayb.

verock

Hi Ladies-

This thread is what I have been wondering about for the future as I am now 1/2 way done with my chemo.

husker- I am thinking the same thing. When I asked my onco about what was next for me, he said to listen to my body and report unusual pain and symptoms.

sandilee- I am so sorry to learn about what happened to you. This is exactly the scenario that I am afraid of..... Thank you so much for your valuable advice. I guess with my BRCA1+ mutation I should be more proactive in my monitoring....

Dx 01/07/2016, IDC, Left, 2.5 cm, stage IIA, Grade 3/3, 0/2 lymph nodes, ER-/PR-, HER2- (FISH), BRCA1+

Surgery 2/10//2016 Bilateral Mastectomy (BMX) with Reconstruction: Prophylactic mastectomy: right. Prophylactic salpingectomy and oophorectomy , Lymph node removal: Sentinel

Chemotherapy 3/10/2016 six rounds of Carboplatin (Paraplatin) and Taxotere (docetaxel)

exbrnxgrl

For scans that do involve radiation, PET, for instance, radiation exposure is a concern, even at stage IV! Scans are not benign. In the first few years after my stage IV dx, I was scanned every 3 months. After a couple of years of NED, we moved my scans to every 6 months. since I am almost 5 years out, we're now toying with only annual scans. I would hate to do well, in terms of bc, only to suffer some other ills because of radiation exposure. I may be stage IV, but my mo is still concerned about this. On the other hand, she would happily scan more frequently if I had pain or other symptoms. She does not do tumor markers, since a rise would just mean a scan, which I get 2x a year anyway.

As for pain/symptoms, most of us stage IV ladies use the two week rule. If the pain lasts for two week, call the mo.

TallnTerrific

I had pretty severe spinal degeneration prior to the BC, and the aches have been worse since I starting taking the AI. Yesterday I was working all day to help my son pack, move and clean his apartment, but at end of it all I slipped on a wet floor and landed hard on my rear end. I jarred my whole spine all the up to my neck. I am very sore today but I can walk around with soreness. I had a DECA scan at the time I started the AI. But haven't had a bone scan. Should I take this opportunity to get a bone scan or at least a back X-ray

TallnTerrific

Well I finally fought for a CT scan and while my breast cancer remained inactive, they discovered a mass in my stomach which was recently diagnosed as a Gastrointestinal Stromal Tumor which a sarcoma. This is a different cancer completely unrelated to the breast cancer. I guess my fatigue was more than coincidental with the recovery from the breast cancer and AIs. I am still freaked out by having two different kinds of cancer, but I had not started having GI symptoms yet, which is why most people ge diagnosed. Again I tell you all to trust your instincts and get things checked out that seem wrong to you. No one knows your body like you do.