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Hello Everyone, I'm New Here....

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Hi there, my name is Sherry & I'm 41 years old.  I'm a single mom of 4, they're all teens.

First I want to say that wherever you are in your journey, my heart & prayers go out to you. My family has been through a lot this past year, we lost my 38 year old brother to stage 4 lung cancer 6 months after diagnosis, and now I'm going through this. I'm hoping to find some support & maybe even someone who has been through what I have so far in this ordeal. I'm at the "wait and see" stage after $41,000 worth of tests & surgery & we all know how much we love to wait.  (Thank God for insurance, my part is "only" $1,200 so far) I apologize in advance for the long story.  Here goes...

On 2-14-13 I went to the ER for chest pain/pressure & pain in my right shoulder blade. They ran a CT with and without the IV dye and my heart looked fine, but they discovered 2 spots on my right lung and multiple enlarged lymph nodes (over 2cm) in my right axilla and the right side of my mediastinum. (I think 8 total) They admitted me & ran about 30 different blood tests for viruses & other things it "could be". Blood work was ok except my red blood cell count/iron is low which I've never had before. Ultimately they sent me home with appointments for a mammogram and a PET Scan scheduled for the following week.

I will quote the PET scan results here so I don't mess up explaining it:  "No metabolically active nodule or mass is seen in the right or left lung. There are two enlarged hypermetabolic lymph nodes present within the right axilla, the largest of which measures 2.4 cm in diameter & demonstrates maximum SUV values ranging to 9.6.  These are likely malignant or metastatic in nature. There are enlarged hypermetabolic lymph nodes present in the mediastinum involving the middle mediastinum in the right paratrachial & pretrachial space, precarinal space, subcarinal space and bilateral hilar regions. Representative adenopathy in the subcarinal space measures 2.6 in diameter & demonstrates maximum SUV values ranging to 5.6. These are also likely malignant or metastatic in nature."  The rest talks about a spot on my ovary & that the other organs that are ok.

So based on this PET scan my PCP sent me to a surgeon to have the lymph node in the right axilla biopsied since it was the easiest to get to. The surgeon decided to do an ultrasound guided needle biopsy and asked me if my PCP had me see an oncologist yet.  He hadn't so I decided to call an oncologist myself to see if they'd want to see me yet because things weren't moving fast enough for me.  At their request I faxed the PET Scan to the office & they called me back wanting to see me the next day.  He said a needle biopsy wouldn't get a big enough sample so he had my surgeon change it to an excisional biopsy. March 4th was the biopsy, and the node they took was 4cm! Pathology report came back basically saying "no definite lymphoma seen. Changes like these can sometimes be found adjacent to other abnormal lymph nodes." It said diagnosis was "Florid reactive hyperplasia with follicular lysis & progressive transformation of germinal centers." It also said "Polyclonal b-cell hyperplasia". The pathologist told my oncologist that diagnosis is usually seen in HIV positive patients. I'm HIV negative, with no behavior in the past several years to put me at risk for it, so we know it isn't that. (They ran a test when I was in the hospital 2-14 to verify this too just to rule it out) I did read that PTGC are associated with Hodgkin disease or sometimes it's lymphoma but they think it's PTGC. You can see why this is all so confusing to me.

I also had a call back from the radiologists office that did the mammo & they informed me they needed ultrasound of both breasts. (They were thinking lymphoma or breast cancer from the initial hospital visit) Plus an ultrasound of my right ovary because the PET scan picked up something on it but it was mid-cycle so I assumed it was ovulation. I wasn't worried about the ovary. All ultrasounds came back normal but I did see the other giant lymph node in my right axilla that's left. She measured it across & it was also 4cm.

So my oncologist has me on the wait & see path now unless I start getting more severe symptoms. He said that if the node had tested positive he'd take the same action anyway because if it's lymphoma it's super early & I'm not having many symptoms other than the enlarged nodes. He doesn't want to go into my chest to take the other nodes since that's a riskly procedure in itself from what I understand. So we're redoing all of the tests again in June & if they're still growing we'll decide where to go from there. At some point I heard the nasty word "bone marrow biopsy" but my brain was so scrambled by then I'm not sure when he would be serious about doing one. Probably after the next tests if they're still enlarged.

I apologize that it took me forever to get all of this out, is there anyone here who has been through this similar situation? I know that they could pull all 8 nodes and only 1 be positive for cancer, so I know I'm not off the hook just yet. Honestly I'm ready to handle whatever comes my way, it's just the wondering that's going to drive me insane these next 3 months.

Thank you if you stuck it out & read this whole thing. Hope to hear from you guys soon.  Sherry

PS I sleep in a 72 degree house, I've been waking up at night overheated thinking someone turned the temp up only to find it's 68 or 69 degrees. I'm not sweating profusely so I don't consider this "night sweats" but I'm waking up hotter than normal. Is this an important thing to tell my doctor about?

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Well...thats a lot of information to digest, but it sounds like the "watch and wait" approach seems appropriate at this time. Watch and wait sounds so crazy when all we want is something to be done to rid ourselves of the cancer, but sometimes it actually is a good way to go. The hardest part of course is staying calm during this period. So much easier said than done, but somehow you will need to figure out the best way to handle it. Medication for anxiety can help, counseling, support groups, clergy,are a few methods that come to mind. Coming here will help immensely because we have all experienced the waiting process in one form or another and totally understand  what your feeling. Others will join in soon to lend support, so keep checking in. I wish you the best and will keep you in my prayers. Hang in there...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62)

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

Sherry,

  I can't add anything to what Sue has already said. The watching and waiting is hard to do. Like Sue said we have all had to wait for something in this journey in one way or the other. The Drs. report is kind of technical with all the big words. Seems they could translate it so you could really understand what they are saying. Sometimes thats what scares the heck out of us. It has happened to me on several occasions. Try to stay away from the Websites if you can. They are a bunch of statistics and can really scare you. The people on here seem to be up to par with information and will be of better sources of info. in most cases. John

jimwins's picture
jimwins
Posts: 2021
Joined: Aug 2011

Hi Sherry and welcome to the group.  I can't speak directly to the watch and wait scenario as I had an agressive form of lymphoma (Diffuse Large B Cell Lymphoma).  However, most of us here have been in the "waiting mode" for test results, etc. and know what that is like - it's very frustrating. 

Medicatioin for anxiety will be your friend so I'd ask your doctor about that right away as it will help you function better.  I would discuss all symptoms with your doctor because they could be important. 

Just know you are not alone and are welcome here anytime :).

Hugs and positive thoughts,

Jim

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Thank you all, again I apologize for the novel-length explanation I figured it would be the easiest way to explain where I am at this point. :)  It helps to know there are others out there who can relate to what I'm going through. From the moment they said "possible lymphoma" my family has been pulling me in many different directions. Do chemo, don't do chemo, go to an herbalist, etc. We don't even know for sure what it is yet. I give my mom some leeway because she watched firsthand what my brother went through last year, but I'd also like to tell her nicely that this isn't the same thing.  And I wish the others would back off just a little & let my doctors tell me what to do, but I also know that they're just concerned.  I started having problems sleeping this week so I called my PCP for a prescription to help with anxiety and I got good sleep last night.

Have any of you been able to work during treatments? I work in a 9-1-1 center, so it's not a physically demanding job but it is mentally & emotionally demanding so I have to be able to function.Thank God I bought a cancer insurance policy from Aflac years ago, that's going to be helpful down the road.

I hate to admit I was so clueless about lymphoma before all of this started. And I appreciate that I can come here and get information that's based on personal experience vs whatever's on the web because there are far too many conflicting articles out there. Pray you all have a wonderful day, and thank you for listening!!

illead's picture
illead
Posts: 524
Joined: Aug 2012

Do you have a pharmacist you can trust?  They have a wealth of information and savvy.  They are also in a position to make recommendations about many things we do not realize.  You might try asking one if they have a suggestion.  Maybe pose the question,  "If you needed a good oncologist who would you choose"?

Just my thoughts, Becky

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Sherry,

Having just been diagnosed with follicular lymphoma, I can relate to all the tests and waiting. I had my excisional biopsy on 3-13-13 and was diagnosed on 3-27-2013. It haso been a surreal experience for me . All the lymphomas are so different, so it does you no good to stress out thinking you have one and you might have another. I know how the waiting and not knowing will eat you alive. I am not on watch and wait though, so I can't imagine what that is like for you. I am a single mother myself and that is the worst part of all of this. Being alone and pleading to whomever will listen that you need to see your children grow up, is where I have been. I have explored alternative medicines such as herbs, but my cancer won't respond because it is slow growing, so that isn't an option. I truly believe it is your body and you should chose how to fight any illness at any point in your life. As far as symptoms, whether you feel they are big or small;anything out of the ordinary should be reported. Don't let anyone push you off or make you feel like you are a hypochondriac. I battled with my doctors office for 6 months, before making my own appointments.I was clueless about life in general before coming to this website...lol....It is just nice to be surrounded by people that have been or will be going through the same stuff you are. There is nothing wrong with feeling helpless, I think we have all been there. If you ever need an ear, I will always be here...I don't sleep much these daysSmile

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Thank you J You’re right, this website is a Godsend! Good luck with your treatment! The plan for me for now is to wait until June & then I’m having bloodwork & another CT scan done to see if it’s progressing or not. He said this was unless “other symptoms develop” & a few have developed since he said that but he still wants to wait for June. So all there is left to do is take it one day at a time....at least I only have 2 months left of waiting.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

I would get a new oncologist TODAY.  Ignoring a PET result ?  Needle biopsies are notorious for missing cancer. I would get a second opinion ASAP.  I have never understood "wait and see" anyway.   You have widespead involvement of something. Of what ?   "Let's wait and see if doing nothing is better than doing something" is basically what the doctors' reaction amounts to.  I would rather do something, given the option.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

I dashed off the comments above on my way out the door to work this morning. Your tests show numerous, remarkable similarities to my diagnosis over four years ago. Like you, my first CT was for heart issues -- no one had any suspicion that I had any form of cancer. The cardiologist was the first to call and say that the imaging stress test showed huge node involvement pressing on the wall of my heart, but no heart disease of any kind.   Also like you, my first CT showed what the docs intitially thought were tumors inside my lungs.  PET and a visual review of my CT by my oncologists later proved that these areas were just scar tissue from earlier trauma (a collapsed lung and rib fractures).  And like you, I had many, many nodes grossly enlarged across my chest cavity, and in the armpit especially.

As many contributors here will state, lymphoma very often has no symptoms, until very late in the game. I myself was late stage 3, and I never had ANY symptoms of lymphoma, except fatigue.   Therefore, I can hardly understand the logic behind "waiting for symptoms."  I NEVER had night sweats, and NEVER felt a node anywhere.  In fact, I had an MD check me for armpit nodes the week before my CT (because of what the heart stress test had shown), and he felt NOTHING EVEN THEN !  Yet, the CT showed large nodes throughout my chect cavity and down into my abdomen. When the surgeon removed an axial node soon thereafter, he told me it was "the size of a golf ball."

I say again that I would go now for a second opinion, or at least demand that your current doc take more aggressive diagnostic action. My two cents worth...

max

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Thank you for the advice Max, it's really helpful! The doctor did say that I'd be stage 2 because it's already in 2 different groups of nodes. I think the problem here is that they didn't find any cancer in the node they removed & the rest would involve going into my chest to get to them. (Except for the other one under my right arm, not sure why they didn't take that one too)  I've read that they could remove 10 nodes and only find cancer in 1 but I'm not sure how true that is? And the PET said they were all "likely malignant or metastatic in nature" which confuses me since one of them was removed and it wasn't. I think he wants to redo all of the scans in June to see if they're still growing, but they haven't gotten smaller & I know at least the one they removed had grown. He mentioned a bone marrow biopsy but I'm not sure when that would be done, would that be better than cutting into my chest? Sorry for all of the questions, I'm sure some of them sound pretty silly.

I am always tired, some days I barely make it home from work & then collapse on the couch. But I never considered that to be abnormal because I just switched to day shift on 12-22-12 after being on nights for 10 years & assumed it was me adjusting to a new schedule. I wake up overheated at night but not drenched in sweat, my kids keep telling me I must have a fever or something because I'm always turning the air down even lower just to get back to sleep. I don't know what to call the doctor for and what can wait so for now I'm writing everything in a journal to keep track of it.

Thank you again for the feedback, that's exactly what I was hoping to find here. Everyone here's pretty awesome & greatly appreciated Smile

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

The one symptom of lymphoma that I DID have was severe fatigue. I could not get up without 10 hours or more of sleep, and was ready to pass out after 4 hours at work. A bone marrow biopsy is almost always taken from the top of the hip, not from the chest.  It is no fun, but is an outpatient proceedure in the doctor's office.  I would get in the doctor's face and ask him why the PET scan results, which indicate "hypermetabolic activity" are NOT cancer ?  I have no medical training, but I think you need to demand another biopsy, and some more aggressive action from your doctor.  At the very least, he needs to give you some answers regarding the PET scan.

max

Machir
Posts: 32
Joined: Mar 2013

Hi Sherry. Sorry you are having to deal with this.  My advice is short and simple. Send all your records out to another onc for a second opinion.  You have a lot going on. I'm not sure how best to select the other onc. When I did it it I asked my current one who he'd suggest I send it to and he gave me a list of names. Maybe your ins carrier could give you suggestions.  Absent one of those two ideas I'd do some Internet research and look for one of the larger onc groups in your area. Good luck. I know you have to be your own advocate no matter how frustrating it seems (and believe me after 9 years of this I can tell you some stories).  Deep breathes. Prayers. Some plea bargaining with the big guy (oops gender foul) big entity up above. Some crying helped.  Lots and lots of hugs. my good luck. Mac 

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Sorry it's been a week & I never replied to your post. I know this is going to sound ridiculous considering what everyone here has been or is going through.  My question is how did your doctor take it when you told him you were going to get a second opinion? Was he offended or did he encourage it?

I know it's my health/my life and I shouldn't care, but I already felt like a traitor going to an oncologist before my PCP of 13 years could refer me to one. I feel like I need to take charge of this situation, but my primary doctor doesn't see anything wrong with waiting until June. A new symptom I had this week is night sweats -I know without a doubt that's what it was. It was 69 degrees in my house, my arm that was sticking out of the covers was freezing to the touch but I woke up drenched in sweat. Even my hair was soaked, it was nasty. I talked to the oncologist that day but he didn't seem to be concerned. He asked me if I could be going through menopause - first of all I'm 41.  Second of all, I have 7 (had 8) enlarged lymph nodes with a PET that showed hypermetabolic activity!!  Next he said it could be a virus so wait & see if it keeps happening and if it does we'll do some bloodwork. Seriously. I know he's the doctor, he has the medical training, & he comes highly recommended. But at what point should my additional symptoms be a red flag?  I know the node they removed had no cancer in it, and most of the remaining nodes are in my chest & therefore "risky" to remove. I also know that they could take out all of the enlarged nodes and only one have cancer in it. But if this IS lymphoma, which according to him I'd be at stage 2, wouldn't it be better to figure it out before it gets to stage 3? This stuff is so insanely confusing. AND my doctor is part of Florida Cancer Specialists with offices all over the state, so it's not a small practice.

My gut keeps telling me send my stuff to Moffitt in Tampa, I've heard that they're pretty good. But my head keeps telling me be patient and give it til June before I start running off to another doctor. If my PCP disagreed with waiting it would be different, I trust him completely. But he also thinks it's ok to wait. So what do I do? How bad could it get in 2 months?

Also, what information would I need to send them if I decide on a 2nd opinion.  I have copies of my PET results and my biopsy results, I could easily get a copy of the PET images if needed. Thanks for listening!

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi rescue911chick,

Sorry for the late Welcome,

I've been following your story, I know exactly how you feel about getting a second opinion. I had a similar situation to yours, my first Oncologist made me do the watch and wait for five months, even though I was at a stage IV with tumors in spleen, liver and bone marrow involvement. Even with all the complications I had he still wanted to wait, and while I did stay with him for 5mo my family wanted to know why he wasn't doing anything! I also felt like a traitor when I went and got a second opinion, but now I think it was the best decision that I made. I didn't even tell my first Oncologist that I was going to see a second opinion, yes I'm that big of a coward hahaha! Well, after I got the app with my second Onc he told me that he had sent info to my first onc about our appointment and what he thought of my situation and what he was recommending, my first onc didn't even answer none of his emails or phone calls, I know that they're not suppose to be like that, that they're suppose to encourage it, but my first onc really got butt hurt! Well it doesn't matter anymore because I received treatment right away and was told I was in remission in Nov so maybe you will find a better onc and you won't regret it! Let us know what you decide to do, sending you lots of positive energy!

Sincerely,

Liz

Machir
Posts: 32
Joined: Mar 2013

My first answer is....you and I don't care what our doctors think about being asking for second opinion.  It was hard for me to get there.....it will be hard for you to get there but we are our own best advocates.  I like remind myself that my doctor isn't doing me favors....I'm actually paying him to treat me. 

OK.... the easier answer....any doctor who gets offended about you asking for a second opinion is a doctor I'd seriously think about dropping.  A decent doctor will understand.  A good doctor will encourage you to get one.  I'm not a mystic or karma guy (well maybe a little bit of a karma guy) but I believe 100% that the better attitude we survivors have the better our treatments can work.  Being worried is unhealthy.

Here's how I asked my doc.  "Doc I don't know what to do.  I' know you are very good at this but I want to get a second opinion.  How would you suggest I do that?"  He said he would write down the names of three doctors any one of which he would feel confident going to if he was diagnosed with what I had.  I picked one and had my records sent there.  Just that easy.  The "Paul Harvey rest of the story" is the second doctor called me a few days later and said he would emphatically NOT do what my first doctor recommended I do.  Becasue the first two opinions differed I got a third opinion which matched the second opinion and that is what I told my doctor I wanted to do. 

If you think it's hard telling your doc you want a second opinion wait until you get to tell him "I'm not going with what you recommended I want you to do what these two other docs suggested."  I told him and he did it.  I had 8 years of remission. 

When I was first told I had cancer and it was either lymphoma or something worse our daughters were in middle school and high school.....I remember praying asking to be able to see them all graduate high school.  They are now all out of college and the older 2 are married.  What a blessing.  That my friend is what you want and the best chance you have to get there is making good choices.  In my humble opinion a good choice is getting a second opinion.  It's almost certain your doctor will understand.  If they don't....he or she will get over it.  Trust me, you aren't the first one to ask for a second opinion. 

I hope this helps.  I'm praying for you.  I know how scarry it is.  (not the asking.....the fear of being sick)  Be proactive is my advice.  Hang in there.  Mac

 

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Thank you for the advice, I'll call Moffitt today and ask them what information they would need me to send them. I think I'm more afraid of the doctors thinking I'm a hypochondriac or something which sounds really stupid but that fear comes from my childhood. (I had chronic bronchitis from second-hand smoke, but I always called a hypochondriac even though I was legitimately sick. I still have issues seeing a doctor until I'm REALLLY obviously sick which is sad) BUT I didn't imagine the 8 enlarged nodes the doctors found when I wasn't even sick & that's concerning, I have RA that's been inactive for years but I've read that having an autoimmune disease like that makes me "at risk", I have two immediate family members with history of cancer (dad-colon, brother-lung plus both paternal grandparents & my dad's sister who have died from various cancers), and while I only had night sweats once the fatigue is gradually becoming worse. I know part of it is probably from stress/worry but my doctor prescribed Ativan for anxiety - I take it before bed so I can sleep - and I'm still exhausted after 8, 9 or 10 hours of sleep. I literally have to drag myself out of bed some days, and I go out to run errands only to return home after one stop because I need a nap. Something's wrong, lymphoma or not, so it's time someone figures it out. Thank you :)

NANCYL1
Posts: 238
Joined: Jun 2012

Sherry:

I just read one post where you speak of Atavin.   I take the generic:  Lorazepam, O.5 mg.   As you say, stress can make you tired.  So can depression.   When my doctor gave me a prescription for Lorazepam, she told me that it can depress you.   Also, I have found that it can make you tired.   

Bear in mind the amounts  of Atavin, and possibly other pills you might be taking.

Nancy

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Hi Nancy!

I’ve had the Ativan off & on since last summer along with an antidepressant. When my younger brother died in July I didn’t handle it well and saw my PCP for medication to help me through it. I’ve always been against taking medicine to help myself through my normal daily life but seeing him die the way he did was traumatic for me. (I held his hand the last day of his life, until he took his last breath, and his body did some scary things throughout the day! It took his body 6 hours to shut down after they took him off of the ventilator & while I was able to be strong for my family that day in SC I went back to Florida and shut down mentally & emotionally.) So I’ve been on Wellbutrin, and the Ativan off & on was to help on days my anxiety levels were still a little high. I recently asked for a refill of the Ativan to help me get to sleep when my mind won‘t shut off because I work 12 hour shifts & need to get good sleep before them. It does make me tired so I only take it before bed and ONLY if I have more than 8 hours to sleep, but it doesn‘t have any lasting effects on me. It’s definitely not the cause of my new & increasing fatigue, this draining fatigue is a lot like what I used to feel when my RA was active but my RA is not active right now. (Hasn‘t been for years) And it's not depression, because I'm already on an antidepressant.

But you are right, any medicine we take can mess us up & it’s always good to keep that in mind when new symptoms pop up!

NANCYL1
Posts: 238
Joined: Jun 2012

Hello again Sherry:

Just thought I would mention pills because I have a few.  Some since heart surgery a few years ago. 

You mentioned a bone marrow biopsy.  Had a number of tests:  CT Scan, PT scan, Endoscopy and a bone marrow biopsy.  Then the diagnosis of Lymphoma, B Cell.  Have now Rituxan infusions.

Had pain pills for bone marrow biopsy.   It was bearable, but better to have light anesthesia, in my opinion.   But whatever you do, don't worry about it.

Too bad we are not discussing politics or the weather.

Nancy

 

 

 

 

 

 

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

So I called Moffitt & told them I wanted to schedule an appointment for a second opinion. When I told them I'm a patient of Florida Cancer Specialists, they told me that they're affiliated with them and that any treatment plan they'd come up with is a plan they would also recommend. So there was really no point in going all the way to Tampa for nothing. I'm just going to have to be content with waiting until June, and pray that if the lymph nodes are still enlarged they investigate further to arrive at a firm diagnosis then. Thank you for all of the advice!

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Sherry,

Find a new PCP and Onc Immediately. I was so sleepy, couln't make it past 7:30pm. I attributed it to getting older, I am 36..lol...But single mother, working full time and school full time, but I JUST KNEW SOMETHING WAS WRONG. My PCP kept telling me it was nothing and that cancer grows and since my nodes on my neck weren't growing it wasn't cancer. SHERRY, I went through this for six months, I am not on wait and see, I am getting my med port put in on monday. Had my PCP responded to any of my complaints, I might be on wait and see. Please do yourself a favor and get very aggressive and don't stop until you find an onc that makes you feel like you are their only pt.

hugs

She514's picture
She514
Posts: 47
Joined: Mar 2011

Hi Sherry,

I've been on watch and wait for over 2 years now.  My Onc has stressed I can go for a second opinion at any time.  I however, have decided to wait to see if symptoms develop.  I do have what I call night sweats (not drenching sheets), just wake up with sweat balls all over me.  I keep my house temp low at night, around 59 degrees (I have no children at home). Oncologist isn't concerned.  You can read my bio as to "my story".  I spent a lot of time at first consumed by the lymphoma but recently have come to terms with it is what it is.  I've made some healthier lifestyle changes, fell fine and am going to continue to live my life.  I wish you well on your journey!  You'll find the support you need here.

Rosie

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Thanks for the reply Rosie! Maybe you can explain to me why the doctors choose to watch & wait for symptoms vs trying to get rid of it head on? Isn't it easier to get rid of it early, or does the treatment cause issues that the doctor wants to avoid until it's absoultely necessary? My family lost my younger brother to stage 4 lung cancer 8 months ago, I know lymphoma's completely different & very treatable, but  despite that I don't think my parents would understand the watch & wait. Thank you so much for your help, everyone in this group is so supportive & uplifting!

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

I too come from Florida and experienced terrible night sweats and weakness before having a pet scan and bone mallow tests and diagnosed with 4th stage lymphoma. The day after the pet scan my oncologist aggressively started chemo - two days in a row - every three weeks apart - and today after 8 rounds of chemo I am in remission thank God. It's been just a year now and I'm doing great- my hair is growing faster than a weed- my appetite is back - and except for two blood clots in my legs I'm about 95% healthy- smiles. When I was first diagnosed I stated to my doctor "let's roll" I hate waiting - I see a problem and go full force resolving that problem- I'm very positive in my thoughts and actions and my new oncologists RN who gives me port flushes every two months calls me "Mr. Positive" lol. My original oncologist has since retired after 30 years in practice and I owe my life to his actions and expertise. Welcome to our awesome chat group- we are all for helping each other and encouraging one another- you are in good hands - Hugs- Steve

She514's picture
She514
Posts: 47
Joined: Mar 2011

What the oncologist say is that my type is very indolent (slow growing) and I have probably had it for a number of years (we know at least 4-5 yrs).  PET scan and CT scan show pea size nodules, in 2 yrs nothing has changed.  Since there is a 30% chance I may never need treatment, why put my self through it when it's possible I may never need it.  What I understand is that if they treat now there is a good possibility that it will return and then they will need to treat with a different drug.  At first I was like I want it gone and you are doing nothing.  As I read up on my type, I came to terms with his plan. Information is empowering. I also discussed with a health advocate RN, who had a oncologist review my blood work and scans...he agreed with my Onc plan.  I'm counting on IF I do need treatment down the road clinical trials will have passed some new less invasive pill with  fabulous results.  My Oncologist is a leading research hematologist oncologist in my area.  After reading up on his work, and developing a patient/doctor relationship I am learning to trust him.  I am a bit of a challenge for himCool

I lost my Dad to stage 4 lung cancer in November 2011.  He lasted a mere 3 1/2 months after diagnosis.  He also elected no chemo as it would have only prolonged his life a few months and at what quality of life?  I know it's different than your brother as Dad was 82.

Many people will question the watch and wait approach but it's very common for indolent cancers.  I have family members telling me I need to go to various clinics until I find someone who will start treating me with chemo.  I just tell them all cancers are not alike.  In fact, I firmly believe we all have cancer cells in our body and it's life events and lifestyles that trigger it's growth.  Good luck with your journey and hopefully yours is not cancer after all!

NANCYL1
Posts: 238
Joined: Jun 2012

Sherry:

In January, 2012, I saw my Internist for a regular checkup and the usual blood test.  She found that my white cells were high.  She sent me immediately to an Oncologist at a nearby Cancer Center.  After a number of tests:  CT-Scan, PT-Scan, Endoscopy, Blood Tests, and finally a Bone Marrow Biopsy, the Oncologist diagnosed me as having mild B Cell Lymphoma.  I am receiving Rituxan infusions.   Thus far, my Red Cells, White Cells, and Platelets are once again normal.

I know the fear of having had cancer in the family.

Let us know how your are doing.

Nancy

 

fullyloved
Posts: 38
Joined: Oct 2012

I have personally experienced and have heard so many stories here of doctors dilly dallying around. Doctors didn't treat me for so long I was on nearly on my deathbed, sick as a dog. I knew for months something was wrong, but my PCP wasn't worried. We may have high quality health care in this country, but I'm still disgusted that it took 6 months of gettting sicker and sicker before the doctors finally woke up!!!!! So get second opinions. Pay attention to what your body is telling you. Cancer taught me that I must be in charge of my own health. You had wondered if anyone has worked through chemo. I worked fulltime for at least half of it, and part time for most of the rest. Chemo is not hard on everyone, and it wasn't hard on me. I felt better on chemo than I had felt for months prior!! And if indeed you do have lymphoma and take the chemo route, I sure hope that it's the same way for you. 

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

I read your “bio” and had to tell you that your story is amazing; your faith inspiring! I have to say that through this whole thing so far I have reminded myself over & over that "if God brings me to it, He will bring me through it". I find so much peace in those words. While my heart dropped that first day when the ER doctor said "we found some spots on your right lung & some enlarged lymph nodes, which are concerning..." I haven't really been scared, and I’ve only cried about it once out of frustration when they still couldn’t give me answers after the biopsy. I pray all the time & tell God I’m ready to handle whatever it is He needs me to go through, I’d just like to know what it is I’m facing. And for Him to give my kids & my parents the strength they’ll need to get through this because I already know I’m strong enough with God on my side J

Thank you for sharing the info about work too. I’m not sure that I’d be able to handle working through it, & I won’t know that unless I get to that point, but it’s definitely good to know it could be a possibility. Prayers to you!!

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