Breast CA and Lymphoma

thereisnodespair

During the routine CT scan after my BC DX, it was discovered that I also have (low grade) lymphoma. Anyone else here have a similar "double" DX?

Jesika63

Hi- I am waiting for biop. results of an enlarged lymph node in my chest. Pet scan showed a few enlarged ones on other parts of my body. Its like a nightmare waiting for results for the second time. My MO was kind of puzzled because my original dx. is Dcis 0, low grade and he feels it is not mets but he said he cannot be sure unless we get biop. He said most prob lymphoma. ? Has anyone else been through this or know about this situation. (two DX.) ty everyone.

ca55

Jesika63 and thereisnodespair - Yes, I was diagnosed in October, 2014 with HER2+ breast cancer and follicular lymphoma. The lymphoma was discovered during the sentinel node biopsy when the surgeon saw a node behind the sentinel node that looked suspicious. I have been on a "watch and wait" plan since then, seeing my MO every 3 months for blood tests and physical exam. Since everything has been stable, I now only see her for the lymphoma every 6 months.

thereisnodespair

B"H

thanks so much ca55 it so helps to know someone with a similiar dx ! wonderful that it is stable, hope it continues that way always! thanks for writing, it is very encouraging to us who have just recently been diagnosed for both....

Kayrem

Hi - my dad over his 77 year lifespan was diagnosed with lymphoma (at 55 years) and lung cancer at 76 years. After he passed, 10 months later, I was diagnosed with breast cancer. I insisted on a genetic test and they begrudgingly gave it to me and surprise surprise, I have a BRCA 1 gene mutation, that I can only assume came from him (mom tested negative). As you have had multiple cancers, I do not know if you have been tested but you may want to look into it if you haven't as it could have surgical implications for you. Take care.

thereisnodespair

Kayrem thanks for your story. I did do the genetic testing and came out negative. Hope you are doing okay. Its this notion of "multiple cancers" which is still difficult to grasp, even "low grade"

ca55 - do they send you for periodic CT scans to check the lymphoma?

Jesika63

I also did BRACA and tested neg. I still have not received my biop. results.

Ca- did they biop any other node in your body other then the sentinel node?

Kay- was BRACA 1 the only genetic testing you did?

ca55

Jesika63 - Yes, they removed the node behind the sentinel node, and it came back suspicious for follicular lymphoma. I then had a PET scan which doctors said confirmed the diagnosis. The node they removed was on my left side, but a few nodes under my right arm and in my right leg/groin also showed up on the scan. I had visits with the MO every six weeks for the first year because I was receiving Herceptin treatments. Then every three months for nine months, now every 6 months. Each time I had blood tests, where they track LDH levels, etc., and a physical exam. They do no do scans of any kind unless I have symptoms.

JFV

Hi ladies, I don't have lymphoma. But, I have been diagnosed with Common Variable Immune Deficency. This means part of my immune system doesn't function. Literature says lymphoma is found in people with CVID. My symptoms before diagnosis of CVID are frequent sinus infections and bronchitis. I was diagnosed via blood tests prescribed by allergist/immunologist. Just wanted to share

thereisnodespair

B"H

JVC - tnx for sharing! do you take medication or other treatment for the CVID?

Jesika63

My results are in. (part of them.) The 2nd opinion doctor is saying the same thing as the first. They are not sure if it is Lymphoma. They what me to go to hematology. The had the EBUS done

and they did not get all the information they needed. I don't know what else they can do for me. I had pet-scan was mildly lit. ad a ct and now the EBUS (biop) Any suggestions??

thereisnodespair

B"H

Jesika65 when they found "suspicious" whatever in the CT i did before my lumpectomy, they immedietly involved a hematologist. they sent me to do a needle bioposy and the results showed that it was definately lymphoma. i do not quite understand why they are not sure in your case.

Jesika63

hi- The EBUS they did was an aspiration of the mass in the middle of my Chest. They where not able to get enough tissue to stage and know what kind of lymphoma it is. So now i need to go back and they need to take a piece of tissue out so they can stage etc. This will be done by a specialist. This node is next to my lung and heart in the left side. Therefore they need a thorasic surgeon to do this under general. The more i wait the scarier i it gets. My oncologist told me he cannot treat something unless he know all the details. Sometimes i wonder if they will find stage 1V breast.

Just trying to stay positive and praying to God that I can get through this. I go next Tues for pre-op test and WEd. for consultation. Hope this does not spread all over with all this waiting. thanks my friends for your support.

JFV

thereisnodespair, I had my first infusion of gamma globulin for CVID this Tuesday. The infusion went well. Yesterday I had a wicked headache. My head still aches today but much less. My muscles are soar today and I'm tired. But, I can function pretty well.

Jesika63 I hope your surgery goes well and you get good news.

Jesika63

TY JFV:. I went for my pre-op and consultation. My Hematologist is pretty sure i have low-grade lymphoma and wants to watch and wait method. Surgeon wants to do the Vats procedure as to be 100% sure that it is follicular because they were not able to get enough tissue when they did the first Biop. I hate when two doctors can't agree and most of all i dislike the fact that i will be completely asleep for this procedure.

My procedure is schedule for next Friday. Hope i don't change my mind by then.

My nodes are too deep in the back so not as easy to get that why this procedure is being done.

CA55: thats the same approach my doctor wants to do with me. Blood work-physical etc. every 4 month. Differences is my doc say he will do cts but no other treatments unless i get symptoms.

ca55

Jesika63 - Wishing you the best for your procedure next Friday. I hope all goes well, and they are able to make an accurate diagnosis for you. I had a weird thing happen when I went for my annual mammogram yesterday. It was of my right side, and the radiologist came in to say she wanted an ultrasound of my lymph nodes. Then she said she is not sure if it is breast cancer, but that I have two nodes that are "chubby" and showing activity. She seemed quite alarmed. I told her that I also have lymphoma, and that I had a PET scan showing nodes there two years ago. She told me to circle back to my MO, and have these nodes biopsied and have another PET scan to compare with my first one because she can't be sure if these nodes are breast cancer or lymphoma. I'm not sure if these nodes are behaving any differently than when I was first diagnosed, but now I have to wait until Nov. 8 to see my lymphoma specialist.

thereisnodespair

B"H

ca55 - wishing you the best! from my own experience nodes cann be "carrying" both types of CA. i had"suspicious" nodes on the left side (where my BC was) - the original needle biopsy was done at the same time as the needle biopsy was done on the breast tumor itself before my BC DX... it came back negative (non malignant).... then in the routine CT they did before surgery, again they saw "suspicious nodes" only this time also by the breast and in other places, and so did more needle biopsies both by the breast and the back.... they already suspected the lymphoma, but thought the hemotoligist was ":crazy" for suspecting the node right by the left breast with the BC tumor could be lymphoma and not BC. The Path on those biopsies "proved" i have low grade lymphoma, and showed to everyones surprise that the lymph node in the armpit was alsp lymphoma (and not BC)..... no one could explain why it was there on the left side where I had the BC, and not on the right side or both. But then .... then the PATH after the surgery showed that there were two nodes in the armpit which had BOTH - BC and lymohoma - so the bottom line is, it can have both, and so it does not really change your status of "watchful waiting"
....

praying you get good news, just know that it could be just lymphoma even if it is in the area that was connected to the BC DX... and too, if it is both, it sure doesn't mean that anything has really changed. It is good they have the PET SCAN mainly so that they have a baseline which they could use if nevessary in the future....

HUGS !!!!

Jesika63

Ca55 - ty I just have to keep my mind busy until then. As for your nodes Its probably the same nodes that were there from the beginning. The question would be- have they changed in size and shape?? Did the Radiologist compared the mamo and ultrasound to previous films? These are two question i always have when i am sent to have scans. I am sure the MO or Lymphoma Dr. will both do this and you will have an answer soon. Wishing you the best and seems like you are being followed up closely-which is a good thing - Pl let us know what they tell you.

thereisnodespair, I just learned something new. I was not aware that we can have BC and Lymphoma in the same node. Weird though my nodes are all deep in my body not near my breast. This disease is really tricky.

JFV- I hope you are doing well.

Hugs

ca55

Jessica63 - I am guessing that they are the same nodes, and that they may have changed since they did not mention them last year during my visit for the mammogram. I don't know that this radiologist compared them to last year's films, though. I'm kicking myself for not asking her to do so. I'm taking results of both mammograms with me on the 8th.

thereisnodespair - Thank you for your response. I had no idea that a lymph node could carry both lymphoma and breast cancer. Just another fun fact about this disease! So far I have an appointment with labs on the 8th, but I don't know what other tests she will order. It was just so unsettling hearing the radiologist describe what was going on in those lymph nodes, but I'm hoping for the best.

thereisnodespair

ca55 - how did the tests go? hoping to hear good news!!!

ca55

Thereisnodespair - Thank you for asking. I met with my lymphoma specialist on the 8th, and she ordered a PET scan with a referral to a breast surgeon for a biopsy of the nodes. I was scheduled for the PET on the 16th, but my insurance refused to pay for it. Now I am scheduled for a CT scan on the 16th. She is of the belief that the nodes are lymphoma, but cannot be certain or take it for granted, so we have to rule out breast cancer. Then after the CT, she will make a determination about the progression, if any, of the lymphoma and decide to treat or not. I did have lab work done on the 8th, and everything was normal. And so it goes. I'm hopeful. Thanks, again.

thereisnodespair

B"H

glad that the blood tests were fine! its also good they are being careful and checking. i think the lymphoma can "grow" but if it is at a slow speed and not causing any difficult symptoms then they continue with the watchful waiting. i know the worse is the waiting until the results are in... and i think maybe having had to wait for results in the past and going thru DX and treatments etc. does not make it any easier.... so we are here with you!

i hate to bring it up because i myself don't want to think about what may "happen" with the lymphoma in my body someday - but i guess still i should state here that i was told by a doctor i truly trust (my brother lol) that if treatment becomes necessary, the treatments offered for lymphoma these days is highly successful. i really hope you (or any of us) have to be treated, but i think it does bring a bit of relief to know that even if and when we reach the point where treatment is necessary, in general it is successful ....

all the very very best!

Jesika63

Hi just an update. Had my Biop done. The surgery went well. I will get my results a week from now. Hoping for the best.

Ca55- Good to hear that you are going to have a CT scan. Of course we hope no progression and glad you blood work was all normal. I had a CT and tons of blood work done before my biop. The Ct showed the nodes are stable and all he blood work done was normal. When is your Biop scheduled for. That is really the only thing that will determine what in those nodes. Hopeful is always good. Don't you wish all this would just go away.

thereisnodespair Yes, that is what we all hope for. Very slow growing and non aggressive, giving it time for them to come up with a cure.

Jesika63

Ca55- praying for good news for you on the CT being done today.

ca55

Jesika63 - Thank you! I did get the results of the CT, and my lymphoma MO said there is a slight change in the size of the two nodes from two years ago (a few millimeters) but not enough to warrant treatment (she believes they are in fact lymphoma). However, she is forwarding the results to my breast MO to let her make the decision on a biopsy. I'm waiting to hear from her. One good thing is that nothing else on the scan appeared abnormal. Wishing you good results from your biopsy.

Thereisnodespair - Thank you for your replies. I know first hand how successful treatments can be. My 89 year old father was diagnosed with diffuse large B cell lymphoma last December, and received a modified (because of his age) R-CHOP regimen. He is in complete remission, and possibly cured. I do realize that follicular lymphoma is not curable, but that there are effective treatments available. I'd just like to avoid them for as long as possible!

Fiaranch1

CA55 - I was diagnosed with BC and lymphoma at the same time . 3 years ago. A year ago my lymphoma progressed to Stage IV. So I have been on chemo for the past year and that will continue for 2 more years. While there is no cure for my type of lymphoma (B cell, follicular) . I intend to remain above ground for many more years. Hoping for good results for you !

thereisnodespair

B"H

Fiaranch1 hi... i was also diagnosed with both a few months ago ..... can you tell me a little bit about how you discovered that the lymphoma had "progressed"? were you also on "watchful waiting"? tnx so much.

Jesika63

Fiaranch1- Hi and welcome to the board. Can you tell me what stage and what grade you where at Dx. I was very confused at the beginning of lymphoma with stage and grade. It is so different than Breast Ca staging.

I got my results from my surgical Biop. It says- follicular lymphoma grade 3A but no staging included. ???? They also said they will let me know the rest once they present it to the tumor Board this coming week. So another week of waiting.

Ca- glad you got good results. Pls let us know what your Onc. says.

ca55

Fiaranch1 - Welcome and thank you for your reply. Would you mind sharing what you are taking? Are you getting Rituxan?

Jesika63 - I will keep you posted after I hear from breast onc. I had the same results from my biopsy - follicular lymphoma, grade 3A. I was under the impression that I was Stage III because of the areas of the body affected by lymphoma (both above and below the diaphragm). My PET showed involvement in left and right axilla, and right groin.

Jesika63

Ca- ty so much for answering-- Your Diagnosis seem to be like mine. I too have both (above and below the diaphragm- so maybe i am stage 111 also. I guess stage 1V would involve the organs- not sure-. Before the Biop my second opinion hematologist told me to do watch and wait but now i think they will recommend treatment. I have been having some sweaty nights bit i think it due to the room getting hot. This is all so confusing but i am so glad that i am not here alone. I wish none of us were here.

i have had so many test done just to come up with the Type and grade. On tues i will ask for the staging part. these are the test that i have had. Tons of Blood work, two Ct Scans, xrays, Pet scan, Ebus for Biop which they did not get enough tissue from and finally the Vats, which brought me to where i am now.

My regular Oncologist sent me to an all Cancer Hospital for the Biops. He wants to make sure he has all the information on the nodes and an opinion from them before he decides to treat or not.

Jesika63

update-- Went to my appointment to remove my stitches from the Biop., site. The surgeon did not have much more to add to my diagnoses. He told me my Oncologist will call me. He treats lung ca not lymphoma but we needed him to do the biop because he does Robotic Surgery and my lymph nodes where to deep in the body. His nurse did tell me that staging in lymphoma is different than BC. So not to worry so much about Staging. The specific type of lymphoma is what they are concerned with and grade, so that they can give you the correct treatment if and when necessary.

Hoping that everyone here has a peaceful day. I am personally great full for every day and consider it a gift and even in that frame of mind fear and anxiety sometimes creeps up on me.

Happy Thanksgiving for those who celebrate it.