Need for follow up testing

udpt82 · April 2012

Hi everyone,

I was dx with ILC in Sept. 2008. I had chemo, BMX and then radiation. Since then the only follow up testing is blood work (monthly because I still have a medi-port), including markers. I am now on Arimidex and so did bone density before switching from Tamoxifen. I also have lymphoma so have abdominal MRIs done every 6 months.

My oncologist says he only does blood work unless a problem develops. I am just getting concerned whether I should have more testing.

On a side note, my breast surgeon had been seeing me every six months. I am very sad to say he passed away suddenly in January. Realistically, is there any reason to start up with a new surgeon for monitoring. I feel like the monitoring by the oncologist is enough. Any thoughts?

Thanks for the help.

Anonymous · April 2012

Hi, I stopped seeing my BS after only 6 months from my lumpectomy (saw her twice). Stopped seeing my Rad Onc after monthly visits for 6 months after finishing radiation. I continue to see my Med Onc. Started out every 3 months and now it's every 6 months. I felt each of those docs were only doing the breast exam but the MO also follows me with my meds and does the breast exam and blood work at each visit and sends me for mammo every 6 months and I am going for my follow-up Dexa scan in a few weeks. For me that's enough but you have to be comfortable with what you feel is necessary.

DFC1994 · April 2012

I was diagnosed with ILC in left breast and DCIS in right breast in 2009.I still see my BS every six months and my ONC every six months.I had BMX with tissue expander reconstruction and implants. I see my primary care Dr on an as needed basis. I am curious to know how you found your lymphoma?????? A week and half ago I fould an enlarged lymphnode in my right groin and went to my primary care Dr and he was concerned.I just recently lost 17 pounds without trying.He sent me for a CT scan on my abdomin and pelvic and it came back ok,the lymphnode in question measured 10mmx5mm,said it was within normal range.The CT scan did find a 2cmx1cm cyst in my right kidney.My Dr said not to worry.I see my BS late next week and I am going to get his opinion on this lymphnode I can feel.It is hard and not tender or sore at all and don't move.Any answers you can give me on the lymphoma will be greatly appreciated.I am still worried even though the CT scan was ok,they say ILC is so sneaky thats why I am concerned.I am hoping my BS puts my mind at ease next week.Thanks Dee

udpt82 · April 2012

Hi Dee,

I was diagnosed with lymphoma in April 2007 after a CT scan to check my kidneys and bladder. The kidneys and bladder were fine but they found enlarged lymph nodes in my abdomen. I was sent for a PET scan and then a biopsy was done. The final pathology said it was a slow growing lymphoma that is just watched. I had CT scans every 3-6 months, but had to switch to MRIs after I reacted to CT dye during my PET scan after the breast cancer diagnosis. So far, it has stayed stable so I have not been treated.

I don't know if you consulted your oncologist about the enlarged node, but that is who I would contact. Could you possibly have some infection that might cause the enlarged lymph node? Do you think they would consider a PET scan or biopsy? I know my oncologist doesn't like to do PET scans unless absolutely necessary. I also know that messing with lymph nodes runs the risk of lymphedema. I hope your BS will give you some advice to put your mind at ease.

I know what you mean about ILC being sneaky. I was diligent and mine wasn't found until my breast changed shape and the mass was 9 cm.

I will be thinking of you. Please let me know what happens.

Patti

DFC1994 · April 2012

Patti,

Thanks so much for your reply. I have asked both my ONC and BS about getting a PET scan and they both tell me no,that since my cancers were caught early I did not need one.I get bloodwork every 6 months and chest xrays every 6-12 months and they feel around and check the lymphnodes in my neck but have never checked the ones in my groin. I found this one myself.I have the disk and report from my CT scan and am taking them with me to my BS appointment next week and see if he thinks it needs a biopsy. I am kinda flying solo here hoping the cancer don't recurr.They had me set up to start tamoxifen for 5 years but right after my mastectomies I developed a deep vein blood clot and my ONC tested me for genetics clotting disorders and I was un-lucky enough to test positive for 2 and since the tamoxifen has a side effect of causing blood clots they would not risk me taking it and instead 4 weeks after my mastectomies took out my remaining ovary to stop estrogren,hoping I benefit from menopause without the tamoxifen.My tumors were highly ER and PR +.I will ask about a PET scan again.I don't see my ONC again until August but if my BS thinks I need to I will see him sooner. I will keep you updated and thanks for keeping me in your thoughts.

Doe's you lymphoma have any conection to your breast cancer?

My left breast checked out perfectly normal on mammo and the 2 tumors were found during a breast MRI after the biopsy confirmed cancer in the right breast.Scary how sneaky this ILC is.

Dee

PS ,Forgot to answer your question,I have no signs of infection at all.Dr checked me for that plus he also checked my lower extremeties for cuts,sratches or abrasions,none anywhere.My white cell count has been a tad low.In Feb it was 4.2,last week it was 401.He said he didn't worry too much about that because it was not really considered that low.

Kleenex · April 2012

Left breast, 2 cm ILC, June 2008. Lumpectomy, radiation, Tamoxifen. Haven't seen the breast surgeon since the follow-up appointment after surgery and subsequent hand-off to the radiation oncologist, and I haven't seen the radiation oncologist since completing radiation and the hand-off to the medical oncologist - they're all a "team." I am supposed to see the medical oncologist every six months and have diagnostic mammograms every six months as well for five years. I don't manage to do it that often, primarily because it's a fight with insurance every time I have one because we're not actively looking at something. This last time, my blood work was only one vial for tumor markers. Everything has been normal and unremarkable so far.

The word from all of these doctors was that the kind of cancer I had is more likely to return in 10 - 15 years, rather than in this first five years. They don't actively look for anything other than a new cancer or a recurrence in the breasts themselves (the mammograms, although we all know ILC is squirrelly with regard to mammogram imaging, so they're not looking very hard, really). I don't know at what point we'd have some action if my tumor markers came back weird. Possibly they have to reach a specifically alarming level, because I believe there's some natural fluctuation.

It's weird to wrap one's brain around it, but they don't LOOK for the spread of cancer. Possibly this is because they try to keep that from happening with everything else they do, and if it DOES spread, there it is and you're stuck trying to slow it down and minimize its impact on your survival. If you have persistent symptoms for 2 - 3 weeks that are suspicious, that's when they might look for what's happening there. They know that the odds are good if they can deal quickly with an early cancer, so that's what they focus on, I suppose...

Sorry to hear about the passing of your breast surgeon - as I haven't seen mine, my impression is that you're probably good to keep seeing the medical oncologist.

DeeLew84 · April 2012

Hi ladies, this topic is very hepful for me. I see my oncologist and breast surgeon in one week. This will be my one year check up. As far as I know, they will only be doing a blood test. I know that further testing is not needed since my cancer was caught early but it makes me nervous that I will only see them every six months or possibly once a year.

udpt82 I am so sorry to hear about the passing of your breast surgeon. I think that it is probably ok to just see your oncologist now.

Thanks for letting me join the conversation!

kbkea · May 2012

I am so glad you brought up this topic. I just came back from a follow up with Oncologyst who told me that based on the results of recent study, the only follow up will be with the Oncologyst every few months, they will do blood test and manually examine the breats and talk to me about how I feel. Supposedly this study showed that all the preventive tests gave only 2 weeks advantage over dignosis based on symptoms. So they will only do tests of a patient has symptoms. I was just in disbelief to hear that. As far as know, a lot of times cancer does not show symptoms until it's in advanced stage. Just manual exam and blood work does not sound like enough testing.

I had BMX, radiation and now on Tamoxifen. Would be very interested to hear from ladies with similar situations as to what their doctors recommended as a follow up.

newfmama · May 2012

Hi, I had a BMX & 4 nodes on either side. 1 node showed a few C cells but not enough to be considered positive. Oncotype was 19. No chemo no rads. Tamoxifen for 5 yrs. surgeon signed off at 6 months. Onc is seeing me every 3 months until 1 year. Does exam & bloodwork. It then goes to every 6 months, then once a year.

It is kind of scary since nothing really shows up on bloodwork. Gotta believe the big C is gone & not coming back. That's my story & I'm sticking to it. ;-)

Sweet dreams ladies.

Deborah

DeeLew84 · May 2012

Honestly, it really worries me that I will only have a physical breast exam and bloodwork (my one-year check up is Monday). Will we ever get over this anxiety??

kestrelgurl · June 2012

Lymphoma? I thought I was the only one! I am not happy you have a dual pathology, but it is somewhat comforting to know there are others out there.

I was diagnosed with both ILC and CLL at the same time. They only found the CLL because they were digging around in my lymph nodes looking for BC. Once they confirmed the pathology, a bone marrow test found it there so it officially became leukemia rather than lymphoma although it's all very confusing as they say CLL/SLL are basically the same disease?

I am symptom-free on the CLL and my prognostic indicators look good. Blood work is "boringly unremarkable". I see the BS every 6 months, the RO and MO every 3 months and get blood work to check everything at that time.

Not sure which I am more scared of at this point. Two sneaky cancers that might rear up and bite me at any time......fun stuff. Undecided

udpt82 · June 2012

I guess many of us are in the same boat with bloodwork as the main follow-up. I agree, it is somewhat unsettling. I have to hope that both the breast cancer and lymphoma are just chronic conditions I must monitor and live with everyday.

Thank you for all of your posts.

Patti

kestrelgurl · June 2012

Patti,

Agreed.....although I never would have imagined that I would be hoping for a couple of chronic conditions. Smile

patti13 · June 2012

finished with rads on 11/11/11....have been for follow up with mammo - onc - and ro - no one has ever given me a blood test looking for ctc's....should i be worried?

kestrelgurl · June 2012

I get both a physical exam and bloodwork. I think they are looking for CLL progression with the bloodtest, not so much BC, but I'm not completely sure.

Need for follow up testing

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