Dec 2, 2018 03:11PM - edited Mar 23, 2019 10:15PM by jo6359
Meet others concerned about developing a recurrence or metastases.
Posted on: Oct 8, 2018 05:55PM
Ladies, I have been reading posts from so many brave, smart, funny, and caring women out here all summer, but haven't posted myself. Maybe I am afraid to make it real. But here goes...
Completed surgery, chemo, and radiation for ILC in 2010 at age 55. Quit Armidex after 4 months because of unbearable side effects. Onc told me if I wouldn't take Arimidex, there was nothing she could do for me, so good luck and see ya! Fine. I moved on, and never really looked back.
Have been happily in denial about the risk of recurrence, until getting in the shower in April when a stream of water hit the nipple of my BC breast in such a way that it was like an electrical shock. Then looked down to notice that the nipple was listing to one side. Mentioned it at my intake appointment in June for a new gp (we had moved) and the NP glanced at it and said, well you are due for a mammo (I have no confidence in mammos for me since my lobular was invisible) and I think your insurance will pay for a screening MRI. So I figured that was a reasonable move.
Weeks go by, then I get the mammo, nothing. Get the MRI, nothing but a vague "thickening" in the area of my scar. By then there is a large dent between the nipple and the scar. My GP thinks it's reasonable to look into this, so they send me to a breast surgeon at a nearby university center where I had the imaging. BS says it all looks fine to her, and writes in my record that she believes it is nothing and I am very anxious. I decide to get a second opinion, and lo and behold the second BS at a different center walks in and says she is BFF's with the first BS (small world here in central Virginia!), and says she agrees with the her best friend (except she did nothing except read her BFF's report!).
Jeez, so my GP sends me somewhere else for an ultrasound. Kind, lovely tech but radiologist herself does not listen. When tech finds the scar tissue on the US it looks ominous so radiologist bursts back in the room to take over and biopsies that area, completely ignoring the other areas and never ultrasounds my nipple. Biopsy comes back benign--scar tissue! Completely expected and answers nothing about nipple which is now painful and retracted, and the skin retraction next to the nipple which is increasing seemingly daily. Continue adding symptoms--subtle but never the less... Clear, spontaneous discharge. Breast pain. Tender axillary lymph nodes on both sides.
(Internal Ranting: If these symptoms are all psychosomatic, my brain is doing an excellent job coming up with appropriate symptoms. And, HELLO, I had breast cancer. I had lobular. I have a 20% chance of a recurrence. It's not like I am making this up for fun! I was SO happy in denial, and would LOVE to go back there! It is REASONABLE to pursue this, right?)
GP sends me to a dermatologist in another town to maybe do a punch biopsy of the nipple. She doesn't particularly listen (don't they teach listening skills in med school?) but she is sympathetic and concerned about what she sees. She is afraid she will miss something so has her office call the BS she likes best and tries to get me in to see him that day. Can't but see him the next week. He is incredibly kind and listens. He is doing a biopsy on two areas tomorrow. Hoping for an actual diagnosis in a few days. Maybe duct ectasia? Papilloma? (Some real but benign condition that explains everything would be excellent!)
Thanks for listening! Best wishes to all of you out there.
Posts 61 - 90 (102 total)
Dec 2, 2018 03:11PM - edited Mar 23, 2019 10:15PM by jo6359
Dec 2, 2018 07:50PM KBeee wrote:
Hoping the surgery goes well. Glad you advocated for yourself
Dec 6, 2018 02:37PM Kassy54 wrote:
I went to the reg gyn and saw the nurse practitioner because of my tender lymph nodes (didn’t want to complicate or delay the surgery) and she found a new lump in the BC breast that is not part of the lumpectomy scar tissue. Jeessh!
She is ordering a bilateral us of breasts and lymph nodes. She sent it to UVA’s breast center, which is good...
hopefully nothing but... I don’t know how you ladies who have gone through multiple recurrences have the energy to get up in the morning—I am exhausted
Dec 6, 2018 05:40PM Astrid wrote:
such a stressful time for you Kassy. You are doing great. One hour at a time eh?
Keeping you close in thought and prayer. Xx
Dec 6, 2018 06:45PM - edited Mar 23, 2019 10:15PM by jo6359
Dec 6, 2018 08:29PM Kassy54 wrote:
You are right. I am probably just lumpy.
Although this simple human touch-based discovery feels more real than all the negative results provided by all the scans and tests and doctors who dismissed my concerns with the most superficial of examinations. And I think I could accept this if it is a recurrence because then I would know and could deal with it, instead of having this continual feeling that something is very wrong and that I need to do something—but can’t. (Well, easy to say now! )
Should know more in a week. Thanks for listening. Take care!
Dec 7, 2018 02:48PM KBeee wrote:
I'm glad they are being thorough, but hate that you have had all of this waiting and worrying. You are in good hands now as far as care providers. Hoping the lump turns out to be benign. As someone who has had a recurrence, I also have had several lumps of scar tissue that had to be assessed. I am lumpy too.
Dec 18, 2018 01:35PM Kassy54 wrote:
Ladies, thank you so much for your support.
The oopherectomy went well and the tumor was diagnosed as a mucinous cystadenoma, no indication of malignancy although apparently this kind of tumor can become malignant? Tumor and ovaries and tubes are gone now so don’t have worry about any later malignancy there...
Breast ultrasound not very satisfying—was told lumps are maybe from wearing underwire bras???!!! (Doctor was quite dismissive, and then I received a letter telling me my life-time risk of breast cancer—did they forget that I had already had BC?) But at least nothing looked bad on the US!
Now that I am in the UVA system, I have been able to get an appointment for my breast and axillary swelling, (and painful axillary lymph nodes) so can get that all checked out soon. Then I can move from my current state of existential gloom back to only slightly anxious lifetime worry.
Will ask about “Survivorship Plan”. Nobody was even thinking about that 8 years ago. You were just supposed to get over it and move on, but clearly there is more to this whole experience.
I just read a study that said that the breast cancer medical professionals tend to blow off women whosesymptoms that do not fit the frame for cancer, because they are so focused on treating breast cancer and really don’t see other stuff as very important. Even though these are likely legitimate symptoms of SOMETHING! The study went on to say that these women do not feel they are being heard and tend to “lose trust” in their medical community. Maybe that was how I got to where I am now—six months from first symptoms...
It has meant a lot to me that you all felt I had a right to investigate whether or not it ended up being a recurrence.
Please take care, everyone!
Dec 18, 2018 02:54PM - edited Mar 23, 2019 10:15PM by jo6359
Dec 18, 2018 04:19PM KBeee wrote:
I'm so glad you've got a good team now!!!!!
Dec 18, 2018 07:53PM Astrid wrote:
me too Kassy
And I am glad to hear there are studies on these things as well as survivorship programs.
Jan 7, 2019 07:17PM Kassy54 wrote:
Hi again, I hope you ladies had good holidays. Was seen at UVA for my breast and axillary lymphodema. The doctor and PT did not think this was caused by the sentinel node dissection done ten years ago. Dr was awesome—she asked “So what question do you have that keeps you up at night?” Is that great or what?
And so I asked whether this could be a regional recurrence in the lymph nodes—which is my darkest fear. She said she didn’t know but would ask the breast surgeons. She got back to me today to tell me they want to see me and someone would call to schedule.
Jan 7, 2019 10:05PM Astrid wrote:
that is brilliant Kassy.
I'm wishing all good things for you...no regional spread!
It is a silent weight we carry around isn't it.
Let us know how any new tests go.
Jan 7, 2019 10:08PM - edited Mar 23, 2019 10:15PM by jo6359
Jan 8, 2019 12:22PM KBeee wrote:
I am so glad you are getting the proper care now.
Jan 10, 2019 02:55PM - edited Jan 10, 2019 02:56PM by Kassy54
I didn't ask for the damn consultation—Dr Royer—who was lovely and was concerned—suggested it. I have now been scolded enough by the medical community for being neurotic to last for years. When I asked about the retraction I had noticed, this doctor had the nerve to say it would be very rare for a tumor to cause a retraction even though that's how I found the original BC! Then she said she would not prescribe an annual mri only a mammogram for me even though I told her my cancer was never seen on a mammogram. I am nevergoing to a doctor again. I could turn purple and grow horns and I wouldn't go.
I was ok with Dr Royer saying “I don't know." I would have been ok with this doctor saying she didn't know—but instead she implies this whole saga has been unnecessary.
I am trying to breathe and remember to be grateful nothing has been found but my anger at being condescended to and treated as if this was all in my imagination is getting in the way.
I am sorry, I know so many women here have life-threatening problems, and I shouldn't complain about insults! But I do wonder, with women being treated this way, how many women just don't want to bother anyone about their concerns until they are at a later stage?
Thank you all for being there for me. I will continue to think of you and wish you all the best possible health and happiness along the way.💕
Jan 10, 2019 03:03PM - edited Jan 10, 2019 03:04PM by Astrid
Hi Kassy. Sounds like it was a horrible experience for you. Nothing worse than being condescended to. Did they look into why the swelling in breast and nodes? surely you will have a scan to look at axilla area? Or referred to lymphoedema clinic for proper diagnosis?
Jan 10, 2019 07:14PM - edited Mar 23, 2019 10:15PM by jo6359
Jan 11, 2019 09:21AM KBeee wrote:
How frustrating. Many doctors do not understand that ILC is not usually seen on a mammogram. Many do not understand that we know our bodies better than anyone.
Jan 23, 2019 10:25AM Springflowers wrote:
Kassy- I too have been made to feel like a complainer and it is so not fun. As hard as it is we need to be the ones in control of our health. My BC was not found on mammogram either. I have been pushing for MRI, finally after I paid to get copies of reports and showed it to a doctor did I finally get an appointment, the end of May is my MRI. Also I have a lump the has been "monitored" for a few years. I looked at my mammo reports and it is not even mentioned, so how are they monitoring it? I have a CT coming up in April to monitor nodule and scaring in lung. Report said that I was "asymptomatic" lmao so the cough I have been complaining about is not a symptom?? wtf. I find doctors so frustrating, and lacking in empathy. I am a nurse and work for the ministry of health and I find it hard. I know doctors are burnt out and work hard but no reason to be mean spirited. I just try to not take it personally ( super hard). Bravery is the willingness to be vulnerable and I believe you have been very brave. So glad you are ok.
Now I need an endometrial biopsy ( I read my report) waiting for my doctor to make the referral for 2 weeks now. I have called yet again, feeling like a pest once again.
Jan 27, 2019 12:14AM Kassy54 wrote:
Nan, I hope your biopsy has come out ok. I am sorry I didn’t see your post until now. This whole culture of telling us to be vigilant but then turning around making us feel like we are neurotic when we express concerns is outrageous.
Kaybee and Astrid and Jo, I hope you are all ok. I went back to my GP (who is very sweet and kind) because I have lost 11pounds in five weeks without trying to, have been SO tired, and the lymph nodes in my neck are swollen. He found an axillary lymph node he is concerned about (I have been concerned about them for five months, but to his credit he has continued to refer me to specialists and we have gotten nowhere.) he did blood work and is trying to get me a pet scan. Now just a day later I have obviously swollen lymph nodes in both elbows, behind my ear (!!!), and in my groin!!! I am afraid to see what happens in the morning.
Did you know that since we have had breast cancer we have twice the risk of getting lymphoma? My brother is in remission after two stem cell transplants for leukemia, which also increases my odds of lymphoma. I am trying not to freak out but I think that is where this is going. There is even something called breast lymphoma which would explain all my weird breast changes.
Maybe jumping to conclusions but...
Took one of my emergency Atavan’s so maybe can sleep now...
Jan 27, 2019 02:15AM - edited Jan 27, 2019 04:57AM by Astrid
oh Kassy! What a situation.
The PET scan sounds ideal for you. Glad at least your GP is behind you and listening.
Sending love and good wishes for swift testing and hopefully resolution too.
Jan 27, 2019 09:04AM Springflowers wrote:
Thanks and so sorry for what you are going through. I did not know that about lymphoma. I have had so many different breast lumps from beign to cancer that this increases my risk. My mother had breast cancer and my father had bowel, multiple myeloma and pulmonary fibrosis so i have lots of risks yet docs still dont really take me seriously. My gyne appointment was scheduled for March 6th, my family doctor said that is not acceptable and is going to find someone who can see me sooner, she said "what are they crazy, that is not acceptable" finally a doctor i like. Although i have a few issues with her too but she is the best so far. I asked about monitor of lump, she said she will review my mammo report.
All the best to you Kassy, Kaybee and Astrid and Jo, so glad for the support and understanding we have here. When i feel like a drama queen i know i can come on this site and find support and feel better about myself.
Jan 28, 2019 08:33AM KBeee wrote:
Kassy, do keep us posted. I'm glad your GP is going to bat for you.
Jan 31, 2019 08:19AM Kassy54 wrote:
Insurance will not approve. They want me to have an axillary ultrasound first, which has a false negative rate of up to 50%.
My insurance has a very high ($7500) annual individual deductible though, and so even if they do approve the PET/CT scan, I would likely pay the full cost which in a hospital setting would be close to my deductible. I can self pay for a PET/CT scan with meds and radiology at a radiology clinic in the Virginia Beach/Norfolk area for $2,000. (It’s kind of the McDonald’s of PET/CT scans—it’s all they do!)
I am fortunate to have enough resources to do the self-pa if necessary, so I am grateful for that.
At this point I don’t think I could accept the results of an ultrasound. A PET/CT scan would be definitive. Either it finds something, and we deal with it, or it doesn’t and I accept that the original issues were late effects, and my latest symptoms are just some viral thing exacerbated by my survivor anxiety, see my therapist, and move on.
What would you all do?
Jan 31, 2019 03:41PM KBeee wrote:
Sometimes it is just a hoop and they will do the PET/CT even if the ultrasound shows nothing.
Feb 6, 2019 02:22PM Kassy54 wrote:
I did get the PET scan, and the results showed no evidence of malignancy. I am really relieved, feel a little silly for pursuing so aggressively, but that dark cloud of recurrence hovering on the horizon is real-as so many of you ladies are living daily. Thank you truly for all your Help, and wishing you clear skies.