Looking to connect with others for support and guidance
Comments
-
@lavenderskies , I totally understand how frustrating the "hurry up and wait" program can be - esp when you want more definitive answers so you can make definitive plans. My biopsy showed a new cancer in my left breast (had a lumpectomy in my right 10 years ago). My surgeon offered another lumpectomy with radiation but the DCIS was sitting right over my heart. I was not going to do radiation at all knowing that, and I didn't want to go through another dx 10 years from now so I asked for a bilateral mastectomy. That happened the 19th. I'm home recovering now. Do they offer MRI imaging to compare what they're seeing or not seeing on the other images? Did I read your earlier comments correctly - in June your mammo presented spiculated deposits but your biopsies have been inconclusive? I hope the "team" convenes soon to discuss your case - peace of mind is paramount - even if it's a bc dx, at least you feel like you're on a path going somewhere. Sending you good thoughts while you wait!
0 -
@hikingandhorses thanks for your message. I hope you are recovering and healing well from your surgery. If you don’t mind me asking, did they keep you in hospital overnight and what did you decide on regarding having reconstruction or going without it? These will likely be my decisions in the coming months so looking for experiences. I know, of course what is right for one person isn’t right for the next, but just interested in how people come to their decisions. So many decisions to be made. Your process was so quick, I am in Canada and it’s slow but even the last time I went through this I was diagnosed and had surgery within 2 months.
This process for me started at the end of June with my yearly mammogram showing some asymmetry. Further imaging showed a mass with spiculated margins so they wanted a biopsy done. At that time it was categorized as a BIRADS 4B. The density may have been why it wasn’t a higher rating as the area in question was of equal density to other areas of my breast but who knows?
The first biopsy showed benign breast tissue and the radiologist at that time who did the procedure, a different one from the one that read my previous images, said she didn’t even see a mass on the imaging and was not convinced it was cancer. When it came back as benign, they were not sure whether it was cordant or not but said it might not be so hence the second biopsy. This was done by a completely different radiologist and again she felt that this was not necessarily a cancer, and said that if she had done my initial review of my images, she would not necessarily have called me back. So here I am with something that could be something or could not be something and having two benign breast biopsies and no further forward after three months! It is concerning to say the least.
I now have some discomfort under my armpit and in that breast and some funny sensations in the arm too, all of which I have reported to my family physician who has added that onto my referral to a breast surgeon because I decided on a bilateral mastectomy at the end of August regardless of the outcome of this nightmare and wanted to get the process underway.
They will unfortunately not let me have a consult with the breast surgeon until the panel have looked at my imaging pathology, etc., and made a decision as to how they feel best to proceed and then they will triage my case. I am tired of it all and just need to move forward with my life at this point. It is crazy to me to have to wait this long.
I do not want any more biopsies as it is just delaying the process in my mind. I have no clue if they offer MRIs but I just want to proceed to surgery. Enough is enough. The patient navigator said she had never heard of them doing a third biopsy so hopefully this means I can go straight for surgery. I doubt they would want to do a watch and wait given my previous cancer history and now current symptoms.
@mandy23 thank you so much for thinking of me.
Long post I know, thanks for taking time to reach out everyone and to read my ramblings!
1 -
@lavenderskies I went home after the procedure with a drain on each side. I had some pain after the nerve blocks wore off but it was manageable. I did not opt for reconstruction - I didn't want anything foreign in my body and I don't have enough fat to use instead. So, I'm flat! I will hopefully get my drains out this Friday. All has been healing well and my drain output has slowed considerably.
It's interesting that your imaging found spicules yet nothing is presenting in the biopsies. I was offered a lumpectomy with radiation but I opted for a bilateral mastectomy for several reasons. 1-the tumor was right over my heart in my left breast. No way was I going to have radiation on that. 2-this is my 2nd primary tumor. I wasn't going to wait around for yet a 3rd diagnosis 10 years from now. 3-Peace of mind. I have no regrets - esp after getting the pathology back. I started out as DCIS only and they found IDC post surgery. It's very tiny (2mm) but strongly HER2+. I'm not anticipating having any chemo or adjuvant therapy.
Wishing you peace of mind after their consultation!
0 -
Hello @hikingandhorses thank you so much for all of the information you have shared about your treatment choices, I really appreciate it. So many decisions that you had to make and be at peace with. I hope that you are continuing to heal both physically and mentally.
Well I finally heard that the panel have reviewed my biopsies and imaging and feel that the results are cordant with my imaging and so they are just recommending a repeat mammogram in 6 months. I am somewhat shocked if I am honest. I really believed that they were going to recommend surgical removal. This process all seems so confusing to me as there seems to be so many contradictions and twists and turns and I am now just wondering if they have missed anything. I am also trying to tell myself that with my previous history they would not leave anything to chance and if two biopsies showed benign findings and a panel has reviewed everything which would consist of a surgeon, radiologist and pathologist then I am in the clear but I am still unsure.
I have gone from an abnormal mammo where one radiologist said there was asymmetry only in one view to a diagnostic mammo where another radiologist said there is architectural distortion and a mass with spicules and the mass was an equal density mass to a biopsy where another radiologist said she does not see a mass and was not convinced that this would be a BC diagnosis. This biopsy gave me benign results but I was recommended to have another biopsy that was done by yet a different radiologist who said she wouldn't have even recalled me from the first mammo and said that she wasn't expecting this second biopsy to come back as BC. This biopsy too gave me a benign biopsy result. It has been an absolute rollercoaster of a ride! Ugh!
I still want to have a bilateral mastectomy but that is going to take time now as I will be triaged low due to not having a BC diagnosis. I do still have some discomfort and weird feelings in that breast and arm although for the most part I think it is improving. I am not sure where to go from here, do I push more but what do I push for? Just so confused but grateful that as of now I have benign results.
Any suggestions or advice for me would again be much appreciated.
Thanks again for listening to my ranting and rambling!
0 -
@lavenderskies - boy you have been through it! But, I'm also confident you have had enough eyes on it to feel fairly confident in their assessment (unless you have a vote of no confidence in the physicians you're working with). The only other option I would offer - esp for peace of mind - is a consult with a heavy-hitter place such as the Mayo or Sloan Kettering. Even then, if you decide to get their opinion, you should be able to send over the imaging already done, including the biopsy slides, and see what they say.
After my first lumpectomy, I would feel changes and random pain in both breasts - all the way up to the time of my mastectomy (10 years later). I didn't know if something was growing, or if it was the fear in my head tricking me (real pain but emotionally triggered, not physically triggered). Initially, the drs would ultrasound it to put me at ease. But they eventually said "it's not a problem". And I am not the type of person that runs to a dr for every little thing. A part literally has to be hanging by a thread before I'll have it looked at.
So, before you go to sleep one night, ask yourself which option should you pursue - outside second opinion or wait and see. Let your head work on that while you sleep and let it give you an answer in the morning. Wishing you the best! Hugs!
0 -
@hikingandhorses thank you for your reply, what you said really resonated with me. Thank you for such an insightful reply. I did go and see my family doctor and explained all of my symptoms in my arm and breast and he did an assessment and spent a lot of time with me going through things and at this point there does not appear to be any more investigations warranted.
My referral is in for a bilateral mastectomy, although this could take some time. I have both of my biopsy results and the report from the panel and with the panel it consists of several disciplines and I do feel that if there was the slightest question they would recommend the area to be removed given my previous history. I have asked my doctor to request the tomosynthesis mammograms moving forward as previously my annual mammogram has just been a regular screening. I am not sure what else I could push for at this point. I almost feel that I must be going crazy if I am experiencing symptoms but there is no explanation! I cannot get a referral to another facility as I am in Canada and really there is no where else to go. I am trying to hold on to the fact that after two biopsies and several different eyes and disciplines on my imaging and a multidisciplinary discussion I should be grateful that this time my outcome is a positive one, I truly believed I was going to be lead to another BC diagnosis. There is so much trauma surrounding a BC diagnosis and it doesn't take much for it all to surface again, it really is mentally draining. It is time for some self care, gratitude and to wait and see if things settle without constantly prodding and poking at myself. That might be part of my problem! Lol!
How are you feeling? Hoping you are continuing to heal.
Thank you to everyone that has been here to offer support and advice. Without you I would have been lost. Hugs to you all. 💚
0
