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Can any of you share what your symptoms were prior to diagnosis?

deanna14
Posts: 734
Joined: Oct 2008

Just wondering about early symptoms with Lymphoma. It would help me a lot if any of you felt like sharing how that were feeling prior ro diagnosis.

jo66
Posts: 4
Joined: Jan 2013

hi everyone out here,

My mom aged 57 years, was diagnosed wid low grade NHL in Nov 2012. Initially she lost her appetite, drastic weight loss, night sweats, cough, low grade fever. all the medicines given by physician didnt help her. Finally it was only a detailed blood test and sonography was done, it looked suspicious. We were advised to go for CT scan of abdomen. Den we were told that she hs an enlarged spleen cos of all her organs has been pushed to the right side and low grade NHL. after biopsy, it was confirmed she has Marginal Zone Lymphoma, a sub type of NHL. In Jan 2013, she had to undergo splenectomy n at the time of surgery, the size of her spleen was 50 cms. We are awaiting the doctor's opinion on her first follow up visit in June 13.

moftexas
Posts: 13
Joined: Feb 2010

I had absolutely no symptoms. I went in for an annual healthy physical, and my doctor felt my spleen was enlarged, so off to get a CT scan. Turns out I had stage 4A follicular NHL. Talk about denial - no way I could have so much disease in me and not feel bad!

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi, I am new to this site. I also have enlarged spleen and liver. Very Very tired. Full feeling after small meal. Enlarged node/small mass in mediastinum area found by ct. My pcp wants me to do nothing. Maybe get a Pet scan in a few months. I am trying to find a hematologist to do the scan now. I have had some low grade fevers and some mild night sweats with the a/c running full blast. Also had severe pain in chest with breathing in June. This is why ct was done. Never found out what caused the pain. Lasted about a month using big dose narcotics. Dr from the hospital where I had the ct called a few weeks later and wanted to know how my lymphoma workup was going. That was the first time I had heard about lymphoma from any Dr. My PCP still wants me to wait and do nothing. My husband and I think we should not wait. I really just don't feel right. How did the Dr know about lymphoma with only a ct showing enlarged spleen. Did they do any other testing. I just know something is off with me and that waiting is the wrong answer. Thanks so much for any advice.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

FORME,
FIRST OF ALL WELCOME TO THE SITE. IT IS LIKE ONE BIG FAMILY HERE. NEXT, LET ME SAY IT GENTLY. YOUR PCP IS AN A**HOLE. YOU HAVE THE CLASSIC SYMTOMS OF LYMPHOMA. ANY DR. WITH HALF A BRAIN SHOULD SEE THAT. I DO NOT THINK THEY CAN TELL JUST FROM AN ENLARGED SPLEEN AND LIVER IF YOU HAVE LYMPHOMA OR NOT, BUT AN ENLARGED SPLEEN AND LIVER IN ITSELF IS NOT NORMAL. A CT SCAN WILL SEE ANY ENLARGED LYMPH NODES AND IT DID SEE A FEW.I AM SURE THEY SAW SOMETHING FOR HIM TO MAKE THAT STATEMENT. THE LYMPH NODES IS WHAT I SUSPECT. I DON'T KNOW WHY THESE HALF WITTED DRS. ALWAYS PASS THIS STUFF OFF AS SOMETHING ELSE THAT COULD BE CAUSING THESE SYMTOMS. LYMPHOMA IS NOT A RARE DISEASE. 66,000 PEOPLE WILL BE DIAGNOSED THIS YEAR WITH IT. IT IS TREATABLE,BUT ONLY IF IT IS TREATED. IF NOT IT CAN BE DEADLY,JUST LIKE ANY DISEASE IF LEFT UNTREATED. BY ALL MEANS HAVE IT CHECKED FARTHER. YOU ARE PAYING THE DR. TO FIND OUT WHAT IS WRONG WITH YOU. HE IS NOT PAYING YOU TO COME AND SEE HIM. IT TICKS ME OFF WHEN I HEAR ABOUT THESE DRS. THAT HAVE THAT WHOLLIER THAN THOU ATTITUDE. SORRY ABOUT GETTING UP ON THE SOAPBOX,BUT WE ARE TALKING ABOUT YOUR HEALTH AND WELL BEING. REMEMBER WHEN YOU LEAVE THE DRS OFFICE HE JUST GOES TO THE DOOR AND YELLS"NEXT". YOU ON THE OTHER HAND HAVE TO GO HOME WITH THE PAIN SUFFERING TO DEAL WITH. BELIEVE ME, IF IT WAS HIM OR HIS FAMILY THEY WOULD BE CHECKED FROM HEAD TO TOE.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi again, I found your response. Thanks for the support. I hope that Monday I will get a call back from the local cancer center to set an app with a hematologist. It just makes sense to follow this through with or without my pcp. He is really not to bad, just believes in taking a slow approach to things. I usally agree with him, but not this time.
I will keep you all posted. Thanks for the welcome.
Lisha

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi forme...
I joined this site on July 8th-10, after being diagnosed with Follicular NHL on June 16th-10, so I too am fairly new here. John is absolutely right telling you to get this checked out. In Jan of this year I found a tiny lump on the left side of my neck and then a few weeks later I found another lump on the left side of my groin. My PCP sent me immediately for an ultra sound on the groin lump because it was bigger than the one on my neck. The results showed enlarged lymph glands plus 3 lumps. My PCP decided we would wait until my physical in May to re-check the lumps because I was feeling great and had no outward symptoms to raise concern. Plus, I had just gotten over a bad bout with bronchitis and we thought maybe the lymph glands were swollen due to medications I had been put on to get over that. Come May 25th...(time for my physical), I knowticed the lump on my groin had grown. Once again my PCP sent me in for a new ultra sound and low and behold the 3 prior lumps had not only grown, but 3 more had developed. Two days later I had a CT-scan which showed 6 tumors in my groin...swollen lymph nodes and lumps in the back of my stomach and 3 lumps in my neck, not just the tiny one I had felt in January. That was when my doctor first mentioned the possibility of lymphoma. He immediately scheduled me for a biopsy of one of my groin tumors(the largest of all lumps) which confirmed I had Follicular NHL...stage 3....Type A(un-symptomatic)...Grade 2/low. PCP immediately...(with-in 5 days of the groin biopsy results) had me scheduled to see a cancer doctor at our local cancer center. My cancer doctor scheduled a bone biopsy which showed no involvement in the bone as of yet. From May 25th to now, there has been alot of waiting for test results which can be "VERY" stressful, but I am soooo thankful to have a PCP that jumped on this from the moment he felt things weren't right with me...(lumps). I am currently in a "Watchful Waiting" time period and not receiving any form of treatment, and won't until the cancer involves the bone, or some other part of my body, or I start having B symptoms. This is a weird period of time for me, because I always wonder..."Where is it going and when"?? Anyways...please pursue further diagnosis even if it means finding a new PCP. John is 100% correct when he says.."If it was the doctors family member, he would have them checked out from head to toe"!! YOU should be treated no differently! Let us know how it goes for you.
Sue

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi, thanks for the welcome and the respone. I am planning to try and get an app with a hematologist on Monday. I do think that I know my self and myself says to get checked. Things just don't add up for me. What is starting to add up is lymphoma. I hope it is not the case, but if it is, then I will deal with it.Thanks again.
Lisha

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

My problem was pain and numbness in my lower back and down my legs. My doctor sent me for a mri that showed spine problems. The L3 was crushed and putting pressure in the nerves and L2 was not right either. Then a biopsy was done on both bones and it came back as B cell lymphoma which is what damaged the bones. Since the results of the biopsy came back last Friday my first oncologist appointment is tomorrow so I am quite new to the process. I haven't been sleeping well either since the first bad test report.

Maggz
Posts: 2
Joined: May 2010

I was diagnosed in July of 2001. Five years prior, I had had a benign tumor removed from my right salivary gland (the gland was also removed) so one day when I noticed a lump under my jaw line, I was suspicious. I went to the doctor and she agreed that there was nothing there that should be a lump since the salivary gland was gone. She also felt a lump on my thyroid so I was referred to a surgeon. I had no pain and no discomfort. Just the lump. After a biopsy came back inconclusive, I was scheduled for surgery. That confirmed the malignant tumor and I was referred to an oncologist. Never did have any pain and to this day, I have a hard time thinking of myself as having survived anything drastic. I was never "sick" so how could it possibly be anything serious??! I feel like a nothing compared to those who suffered through breast cancer, colon cancer, etc. But I'm glad that I found the lump early and was pain-free throughout.

UcanDOit
Posts: 3
Joined: May 2010

The only symptom (didn't realize it until waaay later) was extremely itchy legs. I was running 4 miles x4 day each week, no problems. But, my severely itchy legs went on for three years. I would literally claw at them and never slept more than 3 hours a night. I went for annual physicals and each time my Dr. just gave me some cortisone cream and blew me off.

Finally found a massive tumor by accident when they xrayed my L shoulder cuz I dinged it playing raquetball. The xray tech 'goofed' and shot too wide a pix and that's how they found the tumor. Hodgkin's, stage IV....25 years ago.

Thank you God and family!!!

kathymarsico
Posts: 1
Joined: Jun 2010

UcanDOit-
I dont think the xray tech goofed, sounds like the hand of God at work! Good to hear you are healthy this many years after diagnosis.

I am 3 1/2 years into remission from NH Large B Cell mediastinal. Itched so badly my husband compared me to a mangy dog. I scratched until I bled. Had a non productive cough for 6 months. My face swelled so bad that my eyelids hung over my eyes - found out later that was Superior Vena Cava syndrom, where the tumor was pressing so hard against the SVC that it was reducing blood flow causing the swelling. I was stubborn, thought I was "just tired" until my beathing got so bad I could not walk across a small room without stopping to take a breath.

Finally went to the doctor (I had not been to a doctor in years, and always hated hypochondriacs) and he sent me for a chest xray. Found out that day that although they still wanted to do a biopsy that they were pretty sure it was cancer. Just needed the follow up to find out what kind. 7 cycles of R CHOP chemo, 31 days of radiation, and I thank God everyday for my life, and that it was me and not someone I loved that had to go through this.

My husband lost his job and our health insurance while I was going through treatments, but he took another job with a massive pay cut just for insurance coverage. Anyone who can say that Health care reform is not necessary has never been through a devestating illness. With all my treatments, I was septic twice and also had a few instances of passing out so there were five different hospital stays.

I am now a much more compassionate person. And I never miss my doctor appointments, with ANY of my doctors! Just had a scare from my recent scan 3 weeks ago, but a biopsy turned out benign, so I am very happy! Now his company is getting ready to close its doors, so time to find another health care coverage....

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I was diagnosed in April 2010 with follicular nhl. I had a ct scan to in Jan.to routinely check my bladder and kidneys for any abnormalities during a urology exam. All came back negative except several enlarged lymph nodes in my abdominal area. I never had any symtoms at all. I was sent to the oncology center and was diagnosed. stage 4 follicular. I was on the watch and wait thing until June 2010 and started R-cvp. I had one round so far. 5 more to go. Had some muscle and lower back soreness.
What is your exact diagnoses? John

TheMWord's picture
TheMWord
Posts: 23
Joined: Jun 2010

I had Hodgkin's, and the symptoms are pretty much the same I guess. Severe itching (particularly on my legs) night sweats, fatigue, weight loss, cough, and poor immune system. I got sick about twice a month for over 4 months before I was diagnosed. I also had a tumor the size of a golf ball in my neck, and a bunch of other small ones all over.

paulaandersen
Posts: 6
Joined: Jul 2010

I was diagnosed in 2005 after going to my doctor for a plugged up ear. First, he put me on antibiotics for 10 days and told me I had fluid behind the ears. When that didn't work, he gave me Benedryl for a week. Finally, he sent me to an ENT, who found a tumor in the back of my throat. After many tests, they found I had an aggressive tumor in my nasel pharnyx and two in my neck. The tumor in my nose was causing my ear to plug and not allowing it to drain. I was stage II Large B-Cell and underwent 6 rounds of chemotherapy followed by 22 radiation treatments. It has been 5 years now and I am still cancer-free. When I think back to other possible symptoms, and did itch alot and had night sweats and loss of appetite, but never related it to being anything, especially cancer.

Gene Garlin
Posts: 3
Joined: Aug 2010

Joint pain, night sweats, very weak, low grade temperatures, lost 30 pounds.

webozo's picture
webozo
Posts: 82
Joined: Feb 2010

jackie had night sweats had trouble breathing (she thought she was getting asthma) she also so had itching very bad itching she would scratch untill she bleed. the breathing was from the bigger turmor pushing on her lung she also would get light headed to the point of fainting. she had trouble sleeping. i don't know if this helps. jackie has hogkins.

gypsy22
Posts: 17
Joined: Jun 2010

My mom had a bit of discomfort in her abdomen. All tests came back negative and she was then asked to take part in a new dye for ultrasound testing and that is how they saw the mass in her liver. Now 5 rounds of R-CHOP are in the books.

truckingalong
Posts: 444
Joined: Aug 2010

Wonder how Jackie is doing now... I also have Hodgkins. I noticed that most of the posts deal with non-Hodgkins.

I too had ocassional night sweats, 30 lbs loss, itching, body aches and fatique. Swollen lymph nodes in neck, armpits and groin plus little on lung and pelvic area. I just started on ABVD chemo - and have all those side effects but mostly recovered now and then I go for the 2nd treatment next Tues. I pray for Jackie's recovery and mine. Thanks for sharing.

Liz

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Deanna,
Like so many of the others, I did not have "classic" symptoms. During a med exam for blocked sinuses, they discovered a marble size lump at my lt collar bone. Never experienced any pain, weight loss, or fatique. Thought I was the picture of good health. GO FIQURE. Treatment came fast and with that comes the fatique, eating problems all the others.
Keep us updated with Diagnosis. Many different types of this around, with different treatments and effects. You have a world of experienced survivors here all willing to help.
Dave

rclaxb's picture
rclaxb
Posts: 13
Joined: Sep 2010

I was diagnosed March 26, 2009. In early February I had my regular doctor check up and all was well. Five days later I noticed a lump in my neck on the left side (on a Saturday). I did have about two night sweats but had no idea what that meant except I get hot sleeping from time to time. I had no weight loss or other symptoms. My doctor sent me to my allergist who is a n ENT doctor and he scheduled me for surgery to do a biopsy. I was devistated when he told me I had follicular lymphoma. The research started. Since I was leaving for a trip to Europe in a week, I was referred to an onologist who saw me in a day or two and within three days had all staging tests completed with result, except for the bone marrow result. The day after returning from Europe we were in the doctor's office and found out stage 3 with no bone marrow involvement and he recommended "watch and wait". I was not comfortable with that option and he called Sitemen Cancer Center in St. Louis and an ocologist was doing clinical trials. I saw her in June 2009. Found out my insurance will not permit any clinical trials but stayed with Dr. Bartlett at Sitemen who recommended "watch and wait", that was my second opinion. Near the end of August a new lump on my right neck appeared and I had a biopsy. Results show a few more larger cells but that was it. My doctor recommended R-CHOP, which sarted Nov. 18, 2009 and finished March 3, 2010. In May, I started Rituxan every three months for two years. Presently I have a rash that started 21 days after my May treatment and went away within a week. Now I have it back, starting 21 days after the second treatment. Dr. does not know what to make of it. I researched follicular lymphoma all the time. I keep a binder of all my tests and have copies of all reports. My oncology team is great. I did spend a week in the hospital a week after my last chemo due to neutropenic fever.

debra26
Posts: 4
Joined: Sep 2010

My symptoms were just a hacking cough that would not go away. It was sooo annoying and every over the counter meds I tried didn't work. I don't remember having any night sweats until after I started chemo. I was so tired, I would get tired very easily and didn't even know why. My hair did start to thin out some and I just though I had a cold with some stress until I was diagnosed. I had the cancer in my lymph nodes in my chest and they collapsed my left lunch by the time I had my biopsy.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Are you hungry?

I am sorry, but it makes me chuckle. Are you feeling better now? I am glad to know that I'm not the only one who types odd things now and then.

Take care!
Beth

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Beth,
Same here. I am not a typist by any means, but getting to be the fastest 2 finger typist in town. When I get done typing I go back and read what I typed and sometimes say to myself, What the heck is this. I can't even read some of the words. I have to go thru and correct all the misspells. Some I can't even figure out what they are supposed to be. Then sometimes I transpose the letters real bad. If I sent anything with out spell checking nobody would be able to read it. I know how to spell, but the chemo brain takes over, at least thats what I tell myself. I am sure a lot of us out there have started to notice this with their own typing when on chemo. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Who needs chemo brain to type funky LOL. I say things wrong all the time and I talk on the phone all day at work. Sometimes people are laughing at me, sometimes with me. My tongue gets ties big time. It's a real pain in the behind when your job is talking on the phone LOL

I don't type fast by any means. I think I have to concentrate so hard sometimes it slows me down, although I do try to re-read what I write before sending email from work cause I make some pretty stupid mistakes. When they are funny it just makes it better.

Thanks
Beth

gyrene72
Posts: 7
Joined: Oct 2010

I haven't read through all the comments, but I'll share mine anyway. It started one morning when I put my feet on the floor, and it felt like I was stepping on sharp gravel. And, on a tile floor, no less.
I tried a couple of different doctors, until my daughter (a nurse) told me to go to a neurologist. Huh ?? Anyway, I did, and after some exhaustive testing, he concluded that I had Peripheral Neuropathy. A dying back of the nerve covering in the extremities, and a corresponding dying of the nerve endings. Hummm OK, what now. He prescribed several prescriptions, and told me that he had seen something he didn't like, and was referring me to a hematologist. Huh?? again. A blood doctor? Yep. An oncologist to be exact. First meeting with the oncologist, he did a bone marrow biopsy, and within an hour, came in and said, "Yep, you have cancer"...What a blow!! My immediate reaction was, "Is it curable?. his response was "no". I fired back, "Treatable?" yes, he said. I said, "Then get on with it, now!" Not really that simple, but we started that day.
Turns out that the cancer was the cause of the neuropathy. I don't to this day know just how long I had had the cancer before it triggered the nerve problem. It could have been months, or years. No one knows.
Hope this has some positive meaning for you. My prayers go with this.Tom

//

Deb17910
Posts: 12
Joined: Oct 2010

Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!

Chris17's picture
Chris17
Posts: 119
Joined: Oct 2010

You have been through so much, i wish you well and will keep good thoughts for you on the results, this website is for what you just did, you told your story, which i believe is theraputic, you need to be able to discuss what ever is on your mind, theres a lot of nice people here who are understanding and can relate to what you have been through so please dont feel bad about it.Keep in touch and let us know the results, good luck to you!
Chris (FNHL stage3)4-08 in remission

Deb17910
Posts: 12
Joined: Oct 2010

Thank you so much for the support....It means alot. My biopsy has been postponed until Nov 4th due to me having contracted conjuntivitis! It never ends!! LOL. Will keep in touch. God Bless

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Debbie,
we are behind you all the way. We run into those postponements all the time and it gets to you sometimes. hang in there things will get better. John (FNHL-1-4A-5/10) REMISSION

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Deb,
You have really been through alot. I'll keep good positive thoughts for you with the biopsy on your breast tomorrow. You have a wonderful support group here to communicate with so please let us know what the biopsy shows. Try to stay strong and I'll keep you in my prayers. Love...Sue (FNHL-2-3A-6/10)

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Deb.

Really sorry to hear your long story. I do hope that your baby is OK. You did not say otherwise. He/she is your future. I can say that as an old guy, much older than you, who has 3 of my own - now with 3 grandkids.

What I wanted to tell you is, good luck with your biopsy tomorrow. I'm praying for your test and I know that we are all wishing you the best results. You didn't choose this path, but you've got to run the race and do your best to be there long term for your family.

Good luck,
Tom (DLBCL-4-7/10)

Deb17910
Posts: 12
Joined: Oct 2010

Hi Tom, thanks for your reply and thoughts. Yes my baby was fine after the delivery, thank God!! She's 9 now, and the light of my life. I couldn't have anymore children because of all the complications that I experienced. Biopsy was cancelled today because I contracted conjunctivitis, so I am now waiting until next thurs. Oh well! Hope you are well, thanks again!
Deb (HL-1994)

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Deb,

I too had HL in 1989 and 1994. I had Rads the first time and ABVD the second. I have hypothroidism, mitro valve regurgitation and augmentation of the normal blunting, whatever that means for the heart! I was dx'd w/Invasive Ductual Carcinoma in 2008 and had a double mastectomy, no other treatment, can't have radiation again. This all started when I was 29, I am now 50 and had 2 girls after each treatment (they are 14 and 17).

I wish you the best of luck w/your biopsy. I do know how you feel. Hopefully, they are being overly cautious and all will be ok. (I had wanted to do a prophylactic mastectomy before I got the BC dx, I just didn't push hard enough.)

It seems the further we get from our initial dx, the more complications from therapy crop up. It's a balancing act to be grateful for all these years and now knowing our health is so complicated from the long term effects of treatment.

Sending positive thoughts your way,
Cathy

HD 1989 - Rads
HD 1994 - ABVD
IDC, BC 2008 - DMX

Deb17910
Posts: 12
Joined: Oct 2010

Wow... Cathy our stories are so similar! I also had ABVD treatment with the RADS. It seems to me that IDC is a very common BC to get following the treatment that we had. I realize that I can't have anymore radiation, but can't they just do a lumpectomy or is that just not enough and too much of a risk that it will return? The radiologist said the mass is very small, about 1/4 of an inch, does that matter? How big was yours? Also the lump is in the opposite side where I had the radiation. The radiation was near the left breast. Does that matter? She also said after the biopsy results come in, I'll have to have a breast MRI. Will that show more? Sorry for all these questions. I'm just trying to get some more info. Hope you are doing well and I wish you the best!
Deb

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

My BC tumor was .3 cm, very small in my left breast. They did a core needle biopsy and got clean margins. All my docs felt the only treatment of choice would be a double mastectomy, no reconstruction, and I agreed. After the DMX, the pathology was, additional finding of DCIS in the left breast and LCIS in the right, supposedly "good" breast. Docs said I would be back in 5 years or so with another BC in the right if I didn't take it then (LCIS). Because we can not have additional radiation, this is the recommended treatment option. I had the oncotype testing done on my tumor and it came back that chemo would reduce the risk of recurrence by 2%, I opted out. Tamoxifen reduces the risk by about 40% taking my risk from 10% to 6%. I debated long and hard about this. After 5 months I started Tamoxifen. Two months in, I had gyno problems so an US was done. I had a complex ovarian cyst and elevated CA125 levels. I stopped the tamoxifen after 2 mos, but it wasn't the cause of the issues. My ovary was benign but my CA-125 level is still high and I have more cysts and uterine polyps, that's another problem that I'm awaiting surgery on!! Additionally, I had a TIA last summer, so going back on Tamoxifen is a no, no. It is very strange to know, I really haven't had treatment for BC.

My breast MRI didn't help much. MRI's do not show calcifications that could be BC. A mammo detected my calcifications.

Have you read the posts on the Long Term Effect discussion board on CSN? Also, there is a wonderful mailing list here: http://www.acor.org/mailing.html?l=l
You can join the list for LT - Survivors on ACOR.org. It is a wealth of information and lead me to a Long Term Effect Specialist at Memorial Sloan Kettering Cancer Center in NYC.

Isn't the waiting horrible? How is your heart situation, how often do you get monitored for that? Again, crossing fingers that your biopsy is benign. Ask any question that you may have and I'll be happy to try to answer it!
Cathy
HD 1989 - RADS
HD 1994 - ABVD
IDC, BC 2008 - DMX

Deb17910
Posts: 12
Joined: Oct 2010

Hi Cathy.
Sorry it took me a while to respond, things have been crazy around here. So the biopsy came back positive for IDC, The breast MRI shows multiple areas in both breasts that are noted suspicious. The radiologist recommends bi-lateral masectomy. Do you know that not one Dr has said to me go get an opinion from an oncologist before surgery. Apparently that's the way things are done. I am flabergasted that we are to make this kind of descision on our own. Luckily, stupid is not my middle name and I am consulting with the oncologist that treated me for the HD. I am not using him for the BC because he's too far away. My new oncologist wants to see me 2-3 weeks post surgery. I would think she would be in the loop on what type of surgery to have. Nope, not the way it works. Curious to know why you did not have reconstruction. You were so young. I am planning on reconstruction, as I am not ready to give up the girls yet. The surgeon told me 4-6 weeks to play with, 2 weeks of that is gone already. I'll see my old oncologist on wednesday and then schedule the surgery. I know it will probably end up being a BLM, but I need to hear it from an oncologist before I do it....and they also told me chemo is probably a definite.

My heart condition is fine. I take toprol to control it....I see my cardiologist every 6-12 months...how long was your recovery from your surgery? Is there a link with tamoxifin and TIA? Interesting.....Have you been able to work all these years with the problems u have had?

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Deb,

So sorry to hear of your results.
My radiation onco from the HD had always said, you know if BC crops up, a BLM is the way to go. I only consulted w/a surgeon who was in contact w/my rad onc and my hemotologist prior to surgery.
As for reconstruction, my rad onco strongly recommended not to consider it. It is another major surgery plus you never know how our raiation damaged skin will heal. I could agree w/these statements as well as wondering how a recurrence at the chest wall would ever be detected. I've been pretty ok w/no reconstruction until going to Punta Cana this year and seeing all the "girls" staring at me! One positive, it's nice not having the extra weight hurting my shoulders. I have read of many success stories w/reconstruction for patients like us, so go for it!
Are they doing an oncotype test on your tumor? That will help in deciding if chemo is recommended.
to answer your remaining ?'s: Surgery recovery was 2 weeks, but remember, no reconstruction. Tamoxifin could cause uterine cancer and or blood clots. I have been working all these years. It takes all my energy to work full time plus, run around to my 2 daughters activites, take care of the house, yard and paperwork! You know the drill!! Just hoping my heart problems remain stable so my energy level doesn't fall even more.
Good luck w/your consult. (I went to a BC specialist after surgery and she agreed w/the BLM too.) You will be relieved when you have your surg date and can begin to get back to the "new normal" once again.
All the best,
Cathy

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Fae
Posts: 22
Joined: Jan 2013

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miss maggie
Posts: 929
Joined: Mar 2010

I was feeling the best I ever felt. One Saturday night I had such terrible pain. I was rushed to the hospital and had a CT Scan. DX My small bowel perforated. I was rushed into surgery to have my small bowel resected. Biopsies taken showed perforation caused by NHL. I was in the hospital 3 weeks. I was only treated with Rituxan and have been in remission 3 years.  Maggie

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veedub
Posts: 42
Joined: Jul 2012

out of breath on exertion (this went on for quite a while, maybe 6 months, before i felt anything else)

bloating in the stomach area--hard, not soft on palpation

elevated LDH levels on a blood test--this is a marker for cancer

so then i had a CAT scan, a sonogram, and a biopsy, which confirmed stage 3 b-cell lymphoma with a side of follicular.

underwent 6 cycles of R-CHOP, and then the PET scan showed the main mass to have disappeared, with only one small spot that may or may not be lymphoma, so we are keeping an eye on it.

chemo was rough but survivable. i am feeling lots better and my hair is beginning to grow back--i miss my eyelashes!  this site and my network of helpers were invaluable. if you need a lot of help with rides to treatment, food, etc, you can start a Lots Helping Hands website and enlist people. https://www.lotsahelpinghands.com/ will tell you what to do. right after i got through with treatment, i found out that my cousin in iowa had a recurrence of his cancer, so his brother set a site up for him. and the ACS has a ton of resources, like free cab rides to & from treatment, free wigs, and so on.

 

good luck!

 

v

offspring420's picture
offspring420
Posts: 10
Joined: Jan 2013

First of all, sending everyone going thru this prayers!  Because I had DEGENERATIVE DISC DISEASE, herniated discs in neck, thorasic and lumbar, I thought pain I was experiencing was due to that.  Three months prior to being diagnosed, elevated blood pressure (pretty high), thyroid tests abnormal, indigestion (burning stomach) was prescribed Prevacid, (in my case ribs were hurting cuz later discovered large mass on left kidney from the NHL Diffuse B, then by third month, noticed enlarged lymph nodes under left armpit.  Was being treated with Cipro for 4 weeks! Finally, enlarged lymph nodes in right groin (and the soaking night sweats for a month) prior to being diagnosed.  Did R-CHOP (Feb. 2008, 8 rounds of chemo, Rituxan, and then once radiation was finished (5 days a week for 30 days), continued w/Rituxan every six months (total of 24 treatments) -

Now in my right groin area, I noticed in Nov. 2012, one pea sized lymph node which was never there before.  It got larger in 5 days, then 3 days after that, I discovered another one.  Had Pet/CT Scan 12-6-12, then biopsy, 12-26-12, and I can't believe it but the Scan shows lymph activity (besides in my groin), small lighted area in chest, spleen, something going on with colon (medical terms I can't explain) and the report indicates activity but the different codings are all screwed up.  They can't tell what's going on (3 pathologists have looked at the slides).  Consulted with two expert oncologists on 1-10 and 1-11-13, and now tissue is going to be re-examined by each of those doctor's pathologists.  Wishing you all the best. 

Saya
Posts: 1
Joined: Jan 2013

First my disclaimer - I have not been diagnosed with cancer - actually I've seen several doctors over my 'ailments' and I am starting to believe they think I am a hypocondriac (sp?).

I have been complaining of a discomfort in my right breast for some time (abt 2 Yrs) - the doctors have ordered several mammograms and an ultrasound, finally decided nothing there - the mammo tech suggested a hormonal problem, the doctors just say "we can't find anything" - one suggest it was caused by my underwire bras - so I wore those Genie bras for a while - no change, discomfort continued. I wonder if it is a lymth nodes problem.

I was diagnosed with Chronic Colitis a few years back - so when my stomach started to distened I caulked it upto the Colitis. I did mention it to my doctor, he felt my stomach said he didnt feel anything. After reading this thread of comments - I now wonder if it could be a symtom of Lymphoma.

I have Degenerative Disc Disease - especially bad in my neck - so when my neck started aching and it is in cresingly hard to move (worse at night in bed) - I caulked it up to that. Now my throat is getting tight too. After reding this thread I wonder.

I've had a discomfort in my right-to middle should blade area for some time - at least a year now - I've seen several doctors - they can't figure out why (did CTs and MRIs). They did find a "patch" on my right lung (not to be confused with a mass - apparently with a patch it can be an infection or shadow), I've had one follow up CT - no change in 3 mos (same size), second follow up scheduled next week. The Pulmanologist did a scope of my lung (not a biopsy) found a mucus plug, did a culture - found a bacterial infection - gave me an antibiotic (strong oral one) - after taking it two weeks the pain in my shoulder went away, I felt pretty good until recently (it's been about 2 mos.).

Now the pain in my shoulder blade is back, and now - adding to my aches and pains - the lymth nodes above my collar blades are swollen (right larger than left), my left arm has been hards to move for a month or so (like pinched nerve) and my right feels weak.

Just this week, I developed a rash on my face - never had a rash before (we were in a higher altitude than usual for us), the rash was only there for one day.

I have a doctors appointment in two days - but as I said I think my doctors think I am making this all up - or really feel it, but am a hypocondriac! I just don't know waht to do! What questions should I ask? Am I missing something? My doctor hates that I surf the net - but since nothing they've done hs helped and I want answeres I surf...

BTW... no night sweats or weight loss.

 

Lilly2013
Posts: 12
Joined: Jan 2013

I had absolutely no symptoms. I still would not know that I had lymphoma, except that I now have lost weight and am slightly thinner. The only way I knew the cancer had metastasized was that I scratched my shoulder, and felt a small hard lump. Nothing to get excited about. But my derm told me that it was probably a tumor from an original skin cancer.

I have had it for 8 months. I'm not sick. I have loads of energy. No night sweats. I think it is spreading but not sure. No job. No healthcare. No money. Just wasting and a horrible appetite to eat everything in sight.

NH
Posts: 3
Joined: May 2013

hi, i'm just new in this site, but I really need your thoughts guys, I have this problem for almost one year now. actually I've got an enlargement of nodes on my right side and the doctor said it might be an infection so I've taken a medicine and i feel that my nodes was returning to its original size but then, I've stopped using that medicine, and unfortunately it grew in size until it became smaller again, and then there was an enlargement of nodes at my left side again. sometimes it was painful, sometimes not. I've already done a test for TB, infection.. it was negative. Oh by the way, i feel that I'm easily exhausted and feel dizzy when I'm riding a jeepney which i am not used to be. I'm starting to loss weight, and then sometimes fever. What do you think?

illead's picture
illead
Posts: 544
Joined: Aug 2012

I think it is time that you get a 2nd opinion and preferably an oncologist.  It may be nothing but your symptoms are not discountable.  Don't stop at no from your doctor.  Insist on further help.  Be sure to tell him your symptoms.  Hope this does not scare you.  Like I say it may be nothing but it is better safe than sorry.  Becky

NH
Posts: 3
Joined: May 2013

Thanks for the advice. Yeah I will really go to have a 2nd opinion. You are right, it is better to be safe than sorry. I'd get that. Actually sometimes, my condition scares me because, I'm still young, I have lots of plan as well as God for me. By the way, thanks for the comfort.Smile

NH
Posts: 3
Joined: May 2013

Thanks for the advice. Yeah I will really go to have a 2nd opinion. You are right, it is better to be safe than sorry. I'd get that. Actually sometimes, my condition scares me because, I'm still young, I have lots of plan as well as God for me. By the way, thanks for the comfort.Smile

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

Didn't have swollen lymph nodes but occasional night sweats.

I went to the doctor because of pain shooting down both legs. He sent me for a mri. The same day he called and said it looks like cancer by my spine. After that I had a bone biopsy, needle biopsy and pet-scan APRIL 2010.
04/22/2010 Fluoro guided L2 core biopsy and FNA---Positive for Bcell Lymphoma
05/05/2010 CT guided Aspirate and Core Biopsy of left pleural based mass---Positive for Bcell Lymphoma

illead's picture
illead
Posts: 544
Joined: Aug 2012

I think that is a good decision.  I know it must be scary especially when you are young but if it is something serious like lymphoma please know that most lymphoms are very treatable and many times curable.  Being young is a plus in fighting it.  But, hopefully it is nothing as I said before but your symptoms are a question.  Many lymphoma symptons are loss of appetite, weight loss, night sweats, fever etc., so that is why I think you need to get to the bottom of it.  Keep us informed, we all care what each one is going through and we are here to support you.  You may want to start a new subject on the forum, then you don't have to wade through 2 pages each time.  Hang in there.  Thinking of you,  Becky

underhisgrace1's picture
underhisgrace1
Posts: 1
Joined: May 2013

I have nite sweats, (they said it was menopause) pain in my shoulders(they said fiber mialga) rash on my left arm (psoriasis)The patches ich real bad.

then lumps came up on my skin and the dermatoligist did a bi-opsy and it is angry white cells attaching each other.  then they did a bi-opsy on the back

of my arm and it came back poss. for cutaneous lymphoma. I am having problems with my colin as well, Im going to have them do the bi-opsy again

and make sure that its not part of the C.L. I am about to start mustragen ointment and am having phototherepy now. has any 1 had the mustargen treatment?

if so would you share with me. Thank you 

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