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

cathyp said:

HL Survivor
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

Wow... Cathy our stories are
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

Deb17910 said:

Wow... Cathy our stories are
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

IDC
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 said:

Hi Cathy.
Sorry it took me a
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?

Hi Deb,
So sorry to hear of
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

Feeling great

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

symptoms

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 said:

Symptoms

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. 

Symptoms

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.

 

I'm not so sure.

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?

symptoms

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 said:

Hi NH

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

Hi Becky!

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.

symptoms

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